# sickie mamas tribe (parenting with a chronic illness)



## coop_mom (Apr 10, 2006)

hi all-

I wanted to start a new thread for the sickie mamas out there! I'm dealing with raising a 2-1/2 year old son after being diagnosed with lupus about a year and a half ago...man is it tough!

So I just wanted to say hello, and offer support and hugs to those of you who need them...I know I could use a few hugs myself!







:

It's so hard when my body is so much in pain to chase a toddler around! oy!







:

--kristin
mom to Simon, 8/30/06


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## angie7 (Apr 23, 2007)

Great thread!









I suffer from 2 very rare neurological diseases and several bone malformations in my neck and back. I have had major brain surgery and a metal plate in my neck with 4 screws! The neuro problems cause about 80 neuro symptoms daily along with chronic pain. In a nut shell, my skull is too small for my brain and it falls down in my spinal column thus causing a lesion in the center of my spinal cord that is progressive. I am slowly going paralized from the neck down and one day, I will require a wheelchair. I must use a cane on and off depending on the day. Some of my symptoms are daily headaches, blurred vision, severe muscle weakness in my hands/arms/legs, chronic pain from head to toe, numbness/tingling, memory loss, joint pain, etc.

There is no cure for these, and the brain surgery that I had after my dx is the only "treatment". I will have to have another one sometime in the future. I had 1.5" of my skull removed, my dura opened (hard outer layer of brain), and my C1 vertebra in my neck shaved down. The point is to open up the back of the skull to allow csf flow to restore to my brain since I had virtually none and suffered a stroke like episode shortly before surgery. No meds help either other then very strong narcotics. I refuse to take these b/c I have to care for my children all day alone so I want to be in my right mind so I am med free. It's really hard suffering with these different symptoms and not having any meds that help. There isn't much research being done b/c it is so rare (only about 300,000 people have this).

I was dx almost 5 years ago, when I was just 24 years old and now I am raising almost 3 y/o twin girls! It is hard to say the least. But we take it a day at a time and I try to do my best as a mother and wife. I have a supportive husband who is very helpful (most days







).








mama


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## Llyra (Jan 16, 2005)

Chiming in again. Glad to see we have another thread! Thank you to coop_mom for starting one! I am mama to a 4 year old and twins who are 2. I was diagnosed with moderate-to-severe ulcerative colitis two months after the twins were born, and was sick for 16 months before we finally found a drug-and-diet regimen that put me in remission. That was hard, because I had to wean the twins before we were ready, but I'm doing well right now, actually. The main issue I have right now is that I'm on 6-mercatopurine, which suppresses my white blood cell count, which means I have very little defense against infections, and with a child in preschool, we have a zillion colds in this house. So far, the highlight of my year was last summer, when I had second-stage Lyme AND freakin' MUMPS-- at the SAME TIME.









But really, I'm counting my blessings. I'll take recurring pinkeye and a zillion colds over a bleeding gut, anyday.









Anyway, just wanted to say hi and introduce myself again. These threads are always such a great support, so I'm really glad to see another one going.


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## coop_mom (Apr 10, 2006)

glad to see some folks chime in here, though sorry we have what we have in common!

I just weaned my son at two and a half...I didn't want to wean, but finally had to prioritize my health, it was just too much, I didn't have energy to spare.

angie, wow, sounds like you need tons of hugs!!























and llyra, 2 year old twins, whoo hoo! hope your 4 year old helps chase them around!









take care, chat soon









--kristin


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## Sharon RN (Sep 6, 2006)

What an interesting thread!

I'm Sharon, and I was diagnosed w/hypothyroidism last year. I have also been tentatively diagnosed w/Sjogren's Syndrome, and probably have chronic fatigue syndrome, too. I seem to have alot of neurological symptoms (aka "brain frog") which may be related to the Sjogren's. We were in the middle of a bunch of testing, and I got pregnant (!), so we have to wait until the baby's born to keep going.

I also have a profound hearing loss in the left ear (perf retracted ear drum) and moderate hearing loss in the right (sudden, autoimmune hearing loss) requiring the use of a hearing aid.

I have a 9YO and now I'm expecting again. This pregnancy seems to have really thrown me for a loop, since I seem to have hyperemesis, too. Ahhhh!

Good luck to all the mama's out there!







:


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## Aleo (Jan 1, 2009)

Hi mammas!!!

I was recently diagnosed with hypotension(low blood pressure), i suffer from migraines( that have been getting worse these days).
I dont really know what wrong with my body, I'm sick most of the time.

I feel like a 70 year old lady, actually a 70 year old is healthier than myself.

I've been in and out of the hospital since January and Im getting tired of it.
I bet there's something else besides the hypotension. Im just not healthy.

I feel something is seriously wrong with my body, but everyone thinks that im just being paranoid







:

Im coughing my brains out as im typing this...


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## Violet2 (Apr 26, 2007)

s and strength to all the mommas here.

I'm an asthmatic and am pretty well controlled, but when I'm sick, I'm _sick._

But the asthma is the easy part. I am super sensitive to steroids and had suppressed adrenals throughout my 20s (yes, really the entire decade) resulting in infertility, weight gain, and muscle problems and goodness knows what else. They don't really know b/c this wasn't supposed to happen.

I have some level of pain in my muscles daily, can't even lift weights for my upper body--DD is killing me and I now have bad pain daily in my elbows-- and take a lot of anti-inflammatories.

I'm always tired and have a hard time keeping DD busy. But we are managing. SAHMing helps take some of the stress off.

V


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## Heavenly (Nov 21, 2001)

Hi everyone. I also unfortunately belong here. I have a bunch of medical problems. I have severe fibromyalgia and probably lupus (they are still doing tests). I also have irritable bowel syndrome, interstitial cystitis, GERD, polycystic ovarian syndrome and bipolar disorder. Wow, didn't realize how long that list looks! Anyways I am very incapacitated by all of my illnesses and parenting is a struggle. I used to homeschool but had to put my kids in school this year so I only have the one at home. We always wanted more children but that is just impossible with my health so my little one is our last. Nice to meet you all!


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## angie7 (Apr 23, 2007)

everyone

Quote:


Originally Posted by *Aleo* 
Hi mammas!!!

I was recently diagnosed with hypotension(low blood pressure), i suffer from migraines( that have been getting worse these days).
I dont really know what wrong with my body, I'm sick most of the time.

I posted above but I also have hypotension. I mainly get blackouts with mine after I stand or sit up. Sometimes it just hits, it's done it a few times while I was driving! I increase my salt intake and that helps manage it. I don't have the black outs nearly as often. My normal bp is 80/50.

Quote:

I have severe fibromyalgia and probably lupus (they are still doing tests). I also have irritable bowel syndrome, interstitial cystitis, GERD, polycystic ovarian syndrome and bipolar disorder.Wow, didn't realize how long that list looks!
LOL! I know what you mean. I had to fill out new ins. paperwork this year and I had to use another piece of paper just for all my conditions! The bad thing is I am undx with another med condition right now b/c it is rare that no one around here can dx it. I have to fly to my Neurosurgeon specialist in CO (I live in Indiana) for him to dx it.


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## goodmomma76 (Sep 2, 2008)

Quote:


Originally Posted by *Sharon, RN* 
What an interesting thread!

I'm Sharon, and I was diagnosed w/hypothyroidism last year. I have also been tentatively diagnosed w/Sjogren's Syndrome, and probably have chronic fatigue syndrome, too. I seem to have alot of neurological symptoms (aka "brain frog") which may be related to the Sjogren's. We were in the middle of a bunch of testing, and I got pregnant (!), so we have to wait until the baby's born to keep going.

I also have a profound hearing loss in the left ear (perf retracted ear drum) and moderate hearing loss in the right (sudden, autoimmune hearing loss) requiring the use of a hearing aid.

I have a 9YO and now I'm expecting again. This pregnancy seems to have really thrown me for a loop, since I seem to have hyperemesis, too. Ahhhh!

Good luck to all the mama's out there!







:


Hi Sharon! I have Sjogren's Sydrome, Chronic Fatigue Syndrome, and a long list of others...I also have an 11 year old DS and am pregnant again! Sounds like we have a lot in common. I too have brain frogs, my dh says it's because I'm blonde...lol And I am soooo tired...


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## heidirk (Oct 19, 2007)

If all I have is some seriously out of control Psoriasis, does that count?









My main problem is my itchy/scaly/flaky/bleeding skin right now. Which I do not have time or egergy to treat.


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## Sharon RN (Sep 6, 2006)

Quote:


Originally Posted by *goodmomma76* 
Hi Sharon! I have Sjogren's Sydrome, Chronic Fatigue Syndrome, and a long list of others...I also have an 11 year old DS and am pregnant again! Sounds like we have a lot in common. I too have brain frogs, my dh says it's because I'm blonde...lol And I am soooo tired...

Wow, goodmomma, amazing! We're still not really sure about the Sjogren's, but I have the antibodies for it... ah, well. And I def have issues w/dry mouth/throat. The chronic fatigue is the worse! I had heard that pregnancy helps many autoimmune d/o in the short term, but I'm only like 13 weeks and I only feel worse.









I don't think my dh really "gets" how bad I feel. It's really hard sometimes, because he seems to expect way too much from me that I can't deliver. I don't really know how to deal with that.


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## holothuroidea (Mar 30, 2008)

Hello!

I have major depressive disorder, and I am currently recovering from a very severe episode. Parenting a little baby with depression is very hard sometimes. I've had to sacrifice breast feeding during the night because the lack of sleep was making me crazy. Now that I get more sleep, my symptoms are less severe.

Some days I just cannot do anything. I become paralyzed with fear, anxiety and hopelessness. Recently I've started to forgive myself for these days, and I just let them happen and let go of the guilt. I sit on the floor with the baby all day and I'll read or knit to take my mind off of things.

The house is in a perpetual state of chaos, because I never seem to get anything done. It's hard when DH comes home and I say I didn't get around to making dinner and he responds "Why not!?"







He's been getting on me to cook more often because eating out is getting expensive.

The hardest thing about depression is that people don't understand that it is a debilitating illness and should be treated as such. I tend to blame myself, that I'm physically healthy and I should be able to do more. My DH reinforces it and the guilt becomes overwhelming.

Recovery is a very slow process, and I live in fear of the next episode. It gets better every day, though. My DH is very supportive (even though sometimes I need to remind him that I am sick).


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## goodmomma76 (Sep 2, 2008)

Quote:


Originally Posted by *Sharon, RN* 
Wow, goodmomma, amazing! We're still not really sure about the Sjogren's, but I have the antibodies for it... ah, well. And I def have issues w/dry mouth/throat. The chronic fatigue is the worse! I had heard that pregnancy helps many autoimmune d/o in the short term, but I'm only like 13 weeks and I only feel worse.









I don't think my dh really "gets" how bad I feel. It's really hard sometimes, because he seems to expect way too much from me that I can't deliver. I don't really know how to deal with that.

They took a saliva gland from my lip to confirm the diagnosis of Sjogren's, that was 4 years ago. I don't think it's the Sjogren's that bothers me as much as the CFS, I think that is the real 'problem.' I know what you mean about your DH, mine doesn't get it much of the time either, but he got better as time went on. Now he says I need to slow down frequently. I know when I do more, what seems a normal amount for everyone else, I get exhausted. My rhuematologist advises regular exercise, which does seem to help, but it's so hard to accomplish. I pointed out to my DH once when he was sick with the flu and so tired that I feel like that most of the time, it seemed to resonate with him then. My BF has rhuematoid arthritis, and hers went in to remission during pregnancy, but mine seemed to make me more tired in the beginning and pukey, way different than my first 2 pregnancies. But with 5.5 weeks left, I feel more normal, still tired, but I think comparing it to my DDC it's how they're all feeling. So it didn't put me in remission either, but I do feel more 'normally' pregnant now. So it may come for you to! You can PM me anytime you want! It's nice to talk to someone who understands.


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## basmom (Jun 4, 2006)

Hi.

I have hypothroidism and rheumatoid arthritis...waiting for the 3rd autoimmune to crop up - they usually come in threes, right? - I was diagnosed with the thyroid condition at 18yrs old (my mom has the same condition and recognized my symptoms - more extreme than a moody, tired teenager). I was not officially diagnosed with RA until last year. I don't have the rheumatoid blood factor, but certainly have the symptoms including elevated sed rate, pain/inflammation in EVERY joint in my body, fatigue, etc.

I have a very good rheumatologist (now...had to move on from the first one who wanted to "wait and see" - when I basically was crying all day from the pain) and am on some great drugs - they suppress my immune system though, so I've had some lovely cold this season, but like another mama said, I take that over crying all day in pain.

I did have to wean ds earlier than I (or he) wanted. He was almost two at the time. I just couldn't handle the pain anymore. I still get sad when I think about it. And, I probably won't have any more babies. I would have to stop all meds for three months before I could start trying and that scares me. I fell good now, but I can still "feel" that pain. Anyone else in this situation? How are you dealing with it? (oh- and four of my friends are pregnant now. I am so happy for them, really, but I can't help but feel a bit jealous...


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## coop_mom (Apr 10, 2006)

Quote:


Originally Posted by *holothuroidea* 
Hello!
Recently I've started to forgive myself for these days, and I just let them happen and let go of the guilt. I sit on the floor with the baby all day and I'll read or knit to take my mind off of things.

I think it's great that you have changed your mindframe about your bad days...I changed my expectations of a successful day in general - I figure if I make it through the day, and spend it fairly peacefully with my child, then that equals a successful day







If the cleaning and cooking doesn't get done, well, that's just too bad, I can only handle so much these days...

basmom, I weaned before I wanted to, also (though he was 2.5, so I was pretty much OK with it). We'd already decided that we were only having one child, so I'm glad I don't have to worry about trying to get pregnant again...the meds do make it so complicated.

and I'm really glad you found a better rheumy, I've gone to 5 over the past year and a half (plus two other natural doctors), and finally found a rheumy that I like (she does acupuncture, too). But it's a relief to find someone you can trust!

hope everyone is feeling OK today! we're enjoying some warmer weather here which is a treat







I'm actually feeling well enough to get some cleaning done today, so off I go!


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## basmom (Jun 4, 2006)

Thanks for the welcom, co op mom! I have been feeling great, physically over the last few months. My husband, son and I have enjoyed nice long (slow!) snow shoe hikes this winter...I have even carried ds in the backpack for short distances on these treks. If you asked me to do this last year...I would have cried...So - it's a small victory for me.

I am still really sad about only having one baby, though...


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## bigeyes (Apr 5, 2007)

hypo, fibro, migraines here. A few years back I kind of went into remission but it's all back with a vengeance. I'm hoping for another break soon. Feeling kind of useless at the moment.


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## SeekingSerenity (Aug 6, 2006)

Subbing.

I have fibro and chronic vitamin D deficiency, and we're not all the way through the "rule this out, rule that out" phase of the dx process, so I have to still find out why I have chronic bursitis in my hips (cortisone shot in each side and they STILL hurt like $*&#!!). Got the daily headaches, too, extreme fatigue, debilitating pain (mostly from the fibro). Just started seeing a rheumatologist, and found out only last month that it's not RA. I'd been thinking for years that's what it was, as my sister has it and the symptoms were the same. But the blood tests and x-rays came back okay (except for the vitamin deficiency and elevated cholesterol).

I will be starting Cymbalta in a couple of weeks (been told I have to wean Lil' Man for that). That might help the pain, but I have had it for so long it sometimes seems it will never go away no matter what. That's depressing. (There's that, too - no bipolar, just major depression and anxiety.) Trying to wean is depressing too... he's only 8 months old and while I am SO ready to feel better and be a more effective mama, I don't want to wean. Lil' Man doesn't either... won't take a bottle or a cup. I have to give him stuff with a straw, one swallow at a time... talk about time consuming! It's not working very well.

Yeah, I feel like a whiner... thanks for listening and thanks for having this thread!!


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## basmom (Jun 4, 2006)

I think whining is ok, especially when you are in pain ALLLLLLLL of the time. It is a hard decision to make when it involves your little one (your pain vs. nursing little one longer). I was lucky in that my RA symptoms disappeared at wk 18 in my pregnancy (I remember waking up, walking to the bathroom, and thinking, "wow, it didn't hurt to walk") and didn't start to come back until ds was about 10months..and then it seemed to be a joint at a time. I stuck it out until he was about 14 months and then DH started to get really worried. He made the argument that DS got over a year of nursing (which was my original goal- until I changed it to 2 years







) and it was time to be able to move as DS was becoming very active!


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## Amylcd (Jun 16, 2005)

Joining in. I have hemolytic anemia, which definitely makes life difficult with a toddler! Some days are worse than others... I'm out of breath all of the time, there are days when the fatigue is so bad I can barely get out of bed. I have been known to randomly passout (from lack of oxygen). These are the everyday symptoms, ultimately, I'm looking at heart failure as a very real possibility in my future. I have lived with this my whole life, but it was not until I was pregnant with my last child that I got a diagnosis.

On a good day, my hemoglobin level will be 7. I can not remember a time when it was above that. It's not as simple as taking iron for me... I actually received IV iron infusions every week for 3 months, and it made no difference in my levels. It's frustrating when people suggest I eat more "iron". I wish that was all it took! Right now I'm looking at my only treatment being blood transfusions (mulitple, as they are just a temporary "fix")

I have three girls - a soon to be 7 year old, 5 years old, and the baby will be 2 next month!


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## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *basmom* 
I think whining is ok, especially when you are in pain ALLLLLLLL of the time. It is a hard decision to make when it involves your little one (your pain vs. nursing little one longer). I was lucky in that my RA symptoms disappeared at wk 18 in my pregnancy (I remember waking up, walking to the bathroom, and thinking, "wow, it didn't hurt to walk") and didn't start to come back until ds was about 10months..and then it seemed to be a joint at a time. I stuck it out until he was about 14 months and then DH started to get really worried. He made the argument that DS got over a year of nursing (which was my original goal- until I changed it to 2 years







) and it was time to be able to move as DS was becoming very active!

I don't think it's _whining_ to complain that you have a disorder some doctors claim doesn't exist, a lot of people tell you is _all in your head,_ and has completely destroyed your way of life.







:

I am deeply and profoundly pi$$ed off that my life has changed drastically and nobody can make it better or give me real answers. There was a recent study that proved fibromyalgia patients had nerve _abnormalities_ rather than nerve _damage_, so there is something going on doctors don't quite understand yet.

http://www.fms-help.com/nervous.htm The study makes me feel vindicated, but until they _do_ something, or cure us, what good does it do us really?

I used to be active, productive and happy. Now I'm a lump, and I feel like I've really accomplished something if my house is halfway presentable and I haven't forgotten anything too important. I no longer hold a regular job where I used to work a full time job and at least one part time job. I almost never finish a project without it dragging on for months, where I used to get things done in a few days and be on to the next project. I have no concentration, no memory, the idea of going to school or taking a class is almost terrifying now....in the past I was a straight A student without studying and I _taught_ classes in some of my workplaces.

I remember working with women who would talk about going home to eat dinner and sit on the couch in front of the TV, and I would think _what's wrong with them, don't they *do* anything?_ Now I'm one of them because I have no energy for anything else. Sure, I read books, but I'm still on the couch like a big lump where I used to actually _do_ things. It sucks.

And I go to doctor after doctor only to be told I have to accept this as a natural part of getting older? Bullsh!t. You don't go from being a dynamo to a lump overnight without _something_ being wrong. You don't hurt all over for _no reason._ You don't go from being fairly intelligent to almost brain dead overnight unless you're the character in _Flowers For Algernon._









And because this mostly affects women, it gets ignored, written off as psychosomatic, and ridiculed. I 100% believe if it were affecting more men than women it would have been cured a long time ago.

At least if you have something else people are sympathetic and know your disorder or disease exists and don't call you a liar, yk?







Nothing like feeling like [email protected] and being called crazy or dishonest at the same time.


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## Violet2 (Apr 26, 2007)

I hear you Big Eyes. I have a lot of fibro like symptoms that are due to steroid induced myalgia that has not gotten better. Docs don't get me either. I'm not supposed to happen. They get hung up on that instead of focusing on what they can do to help.

The worst part is our healthcare changes constantly due to Dh's employer constantly trying to cut costs. So this month I am, once again, going to have to explain my history, which imo makes me sound like a hypochondriac even though I'm not and which is quite unusual and hope the ONE doctor accepting new patients can think outside the box. And that they will refer me to some specialists since my fantastic pulmonologist is now out of network and I haven't been to an endocrinologist since before DD was born.

ANYWAY, does anyone else ever beat themselves up about all the stuff they don't do and not give themselves credit for what they do? I find I often 'forget' I'm working with a handicap and I keep expecting myself to keep up with what everyone else does. And I get mad at myself until I remember, I'm not in 100% working order. I don't know why I do this. I guess maybe b/c feeling like crap is normal so I think I'm normal?

My other big challenge is weight loss. I am having such a hard time restricting carbs like I need to. DD gets to eat all my forbidden foods like Kiwi, pineapple, bananas, pears and I have not been able to not take a few bites when feeding her. I really need a zero temptation environment to low carb and with DD I can't achieve that which in turns means I'm not losing weight.

And I'm just getting back to exercise now that we've kicked our colds and I've gotten over the stomach flu.

V


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## bigeyes (Apr 5, 2007)

I still don't know what I can eat. I used to be able to eat whatever I wanted, and when I go into remission I can again, so when I become _the incredible lump woman_ I don't know what to eat at all.

Nothing sounds good until I'm suddenly ravenous and then I want the worst possible foods. I'm a carb fiend and I really need to keep more fast-grab protein on hand.


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## goodmomma76 (Sep 2, 2008)

I often 'forget' about working with a handicap!! I guess because I look 'normal' and everyone expects I can do the same things as them, I forget that sometimes I can't. And when I try to 'keep up with the Joneses' persay I get tired and stressed out. Or depressed. And I have a hard time saying no. I don't understand why a little word is so hard for me...the class still doesn't have a class mom for ds, sure I'll do it, 4h leader quitting, can't have our club anymore, sure I'll replace him, co-worker quits, sure I should be able to pick up the slack...crap, I could go on and on, this is just the stuff in the last few months... And I work really hard to not let it affect what I let my kids participate in, ds wants to do a sport every season, ok, dd wants to do plays and softball and track, ok...and my dh works two jobs, and XH is useless at helping out, so it falls to me...blah...thanks for letting me vent...


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## Sasharna (Nov 19, 2008)

Quote:


Originally Posted by *bigeyes* 
I am deeply and profoundly pi$$ed off that my life has changed drastically and nobody can make it better or give me real answers.











I'm undiagnosed, I just know _something_ is wrong. I'm getting so tired of doctors. I explain again and again that my problems never occur in moments of high anxiety, and yet I'm told again and again to "just drink more water" or "this is common among young women when they get too excited."









I've had episodes of fainting and presyncope since I was 14 years old (spontaneous vision loss accompanied by collapse and sometimes chest pain), along with shortness of breath on exertion that has gotten progressively worse... especially since the birth of my firstborn. Sometimes my heart races to 160 BPM and I can't get a decent breath when I'm just standing at the sink washing dishes!

I had an echocardiogram a few months ago that showed tricuspid insufficiency with elevated pulmonary artery pressure. The cardiologist says this shouldn't be causing me any trouble. BS, I say. I'm currently trying to get my records sent to a pulmonary hypertension specialist but my main clinic is sitting on my files as long as legally permissible.

Right now I'm pregnant, too, so everything gets blamed on that. But I know better. With my first pregnancy, I was running 3+ miles a day all the way until I was 40 weeks. This time, I am effectively housebound. I never know when my symptoms are going to strike, and it's not safe for me to be out in public trying to watch my 3.5 year old son when my heart is racing, I'm weak, and I can't catch a breath.

"Spoon theory" really speaks to me... and I hate those days where you think you've got seven spoons to budget out, but after you spend three you realize that's all there was for the day...

I feel so sorry for my son when he just wants to go to the park and mama can't take him.







The simple act of dropping him off at afternoon preschool can totally wipe me out. It really impacts how I parent him, too. I end up snapping at him impatiently sometimes... not because I'm angry but because the long-winded GD-style explanation leaves me breathless and exhausted.

At this point I just want a diagnosis. I'm just so tired of living in this limbo where I know something is wrong but don't know _what_. ...where the doctors say I'm "perfectly healthy" but I can't keep pace with out-of-shape old ladies.

One thing I'm really lucky for, though, is my family. My partner and my mother are both incredibly supportive and behind me 100%.









I'm glad this thread was started. I know I've just complained in this post, but I often have had questions about becoming a better mother while dealing with health issues. I'm looking forward to learning more about all of you and how you cope.


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## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *Violet2* 
...does anyone else ever beat themselves up about all the stuff they don't do and not give themselves credit for what they do? I find I often 'forget' I'm working with a handicap and I keep expecting myself to keep up with what everyone else does. And I get mad at myself until I remember, I'm not in 100% working order. I don't know why I do this. I guess maybe b/c feeling like crap is normal so I think I'm normal?

Every... Single... Day.

I am always doing something and the next thing I know, I'm on the floor practically in tears because I overdid it. I don't want to be unable to do everyday things, so I keep trying to do stuff that I SHOULD be able to accomplish. Then I am in 10 times more pain than before. I *know* I can't do these things, but I also hate it that I can't. I beat myself up constantly and worry that no one believes the pain I'm in.

Quote:


Originally Posted by *Sasharna* 
At this point I just want a diagnosis. I'm just so tired of living in this limbo where I know something wrong but don't know _what_. ...where the doctors say I'm "perfectly healthy" but I can't keep pace with out-of-shape old ladies.

A part of me was _disappointed_ when they told me I did not have RA. Because I needed to know that they knew there was something wrong, something they could treat. Saying I didn't have what I'd believed for years I *did* have was saying they didn't KNOW what it was. Luckily, my rheumy said "We're still going to figure out what's wrong - this doesn't mean I don't believe you." I wanted to sob with relief when he said that.

Fibro is a disappointing dx though because so many docs thinks it's BS. What I feel is NOT in my head, but trying to convince a skeptical doc that my widespread, nonspecific, chronic pain is not a ploy for attention gets tiring. And the fatigue... oy. I am tired... of being tired.









Today I got a scrip for Topomax, for the headaches. She said it may also help the insomnia (this is the general doc, not the rheumy). If not, she wants me to call back and she'll give me something for that. She said also that the Cymbalta should assist with the anxiety (maybe I will stop chewing my fingers into a bloody mess) but maybe not.... let her know. I can't even start that for another week, as I don't have the $40 copay.

*sigh*


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## lucky_mia (Mar 13, 2007)

I'm in. My diagnosis is Addison's Disease/Adrenal Insufficiency along with hypothyroidism.

The Prendisone I have to take sent me into a major depressive state so I started an SSRI. It seems to be helping. I also have been dealing with vertigo lately. A brain MRI was clear so hopefully it will resolve soon. So dealing wtih all that plus working about 30 hours a week and mothering my 3-year old twins .

Yesterday was a good day, today, not so good.


----------



## Sasharna (Nov 19, 2008)

Quote:


Originally Posted by *SeekingSerenity* 
A part of me was _disappointed_ when they told me I did not have RA.

Thank you for saying this!

When I got back the result about my pulmonary artery pressure, I literally whooped for joy... even knowing full well that if it turns out that I have primary pulmonary hypertension, I'll probably die fairly young. I felt so vindicated at long last. I wanted to take that result and shove it under the nose of every doctor and nurse who has insinuated all I really need is a glass of water and a xanax.

That probably sounds seriously messed up to a lot of people... but for me the uncertainty is the hardest part of any of this. There's a big part of me that would rather hear "You're dying next year" than "You're fine" when I know the latter isn't true.

Quote:


Originally Posted by *SeekingSerenity* 
Luckily, my rheumy said "We're still going to figure out what's wrong - this doesn't mean I don't believe you." I wanted to sob with relief when he said that.

I'm glad you were dealing with someone who truly wanted to see you feeling better. That _is_ lucky!


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *Sasharna* 
I wanted to take that result and shove it under the nose of every doctor and nurse who has insinuated all I really need is a glass of water and a xanax.


For years docs shoved tranqs and antidepressants at me, and now, additionally, I have adrenal fatigue, _something that was made worse by those drugs._







:

I kept telling then it wasn't _psychological_, it was _physiological._

Another thing that kills me is, every time I start smoking again, my fibro and adrenal fatigue magically go into _almost_ complete remission. There is a cortisol connection, and I have improved my health a lot by taking hydrocortisone, but nobody has been able to explain to me exactly why there are a group of patients like me (I've talked to others) who saw their health take a nosedive right after quitting smoking, and who have experimented with similar results. The brain fog never completely clears up, but I'm not entirely sure which illness to blame it on, yk? And I was only diagnosed with a sleep disorder in the past 2 years, so that may have been part of the brain fog problem, too, and I haven't smoked since I found that out.









I could start smoking again right now, and my weight would stabilize again, I would feel better, my head would clear a little, most of my aches would go away and I would only be mildly impaired instead of almost useless. But I would stink and spend a small fortune every month on cigarettes.

Even though there are a handful of us like this, and some migraine patients like me who also reported fewer migraines when they smoked, NOBODY can tell any of us why this is, or how to replicate the results without smoking.

Hell of a choice, isn't it? Smell great and _feel_ like death, or feel alive, get dirty looks, stink and do something that everyone says is gonna kill you?


----------



## coop_mom (Apr 10, 2006)

it's so hard dealing with having to take drugs while trying to live a natural lifestyle...I'm currently on prednisone and really don't want to be on it, but can't deal with the pain without it







hopefully my flare will go away ... sometime ... and I'll be able to get off the steroids

bigeyes, that's quite bizarre about the smoking, though could it be a stress thing? I would think that smoking is relaxing for smokers, so it cuts down on stress...

my weird thing these days is caffeine...I had cut out caffeine for a long time, but now I find if I drink one Coke a day, I have soooo much more energy and can actually get some stuff done...so I'm self medicating with a drink of soda most days









I've been sick for weeks (think I caught my DS's cold a while back) - I think it's time to start feeling better, who's with me??














:

and for those of you who are weaning due to drugs, if you want to do further research about the safety of whatever drug and BFing, here are a couple great resources:

Motherisk's Home Line - (416) 813-6780
for information about the risk or safety of prescription and over-the-counter drugs, herbal products, chemicals, x-rays, chronic disease and infections during pregnancy. -- very helpful

Kellymom.com - http://kellymom.com/health/index.html

Breastfeeding and Human Lactation Study Center (phone 585-275-0088) at the University of Rochester, NY

Dr. Thomas Hale's books: http://neonatal.ttuhsc.edu/lact/drhalebooks.html


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *coop_mom* 
bigeyes, that's quite bizarre about the smoking, though could it be a stress thing? I would think that smoking is relaxing for smokers, so it cuts down on stress...

I've looked at everything I can think of. I've been through a marriage and a divorce, heavy stress, at times worked several jobs at once, had plenty of money and no money, had a stalker, had a murderer for a neighbor, moved several times...maintained my health through all of that, then I get sick when things are relatively OK? That makes a lot of sense, doesn't it?







Maybe I thrive on chaos. But then when things really fell to he!! a couple of years back I got my sickest ever, so it doesn't seem to make a difference whether I'm stressed or not, single or married, can't find a climate connection since I've lived all over....the only constant I've found is smoking or not, and I notice the effects almost _overnight._

But I can't justify $60 a week for smokes and there has to be a medical reason why it makes me feel better other than just the cortisol. I thought I was nuts until I started hearing the same thing from other women, most of them either fibro or thyroid patients, so there is a connection there. I keep tweaking the cortisol dose and feel better for a while, think I've got it whipped, then I feel lousy again. I seem to be cycling faster now instead of having years of remission I only get a few months and then I crash again...don't know what _that's_ about.

I've also seen adrenal fatigue related to PTSD, so maybe stress causes setbacks? That makes sense. Maybe smoking kept my nerves more level? The thing I read a long time ago that set the bells ringing said something about cortisol stopping the adrenaline rushes, and that seems to be what I was having for most of my life, these rushes of adrenaline that I thought everyone else had, too, only _they didn't._ Since I started taking cortisol I no longer shake when I get upset or angry, and I've done that my entire life as far back as I can remember. I still get sick if I don't eat when I need to, but not like I used to, immediately getting so sick to my stomach I almost threw up if I didn't remember to eat every 2 to 3 hours. Apparently that was all adrenaline and the cortisol balanced that out. When I smoked, it did the same thing. Now, you go tell a doc you're having those symptoms, and what do they give you? Xanax and antidepressants, which didn't help me at all, just made me sleepy and I still had the same _physiological_ symptoms, caused by excess adrenaline.

For 35 years I was bone thin, ate enough for 3 people, and doctors all thought I had a mental problem and prescribed tranqs and antidepressants.
I'm no rocket scientist, but I don't think it takes one to see the flaws in their reasoning.







: I kinda think I was just a big ball of adrenaline and someone (with medical training) should have seen it before I did, yk? But with all my research I still haven't found where anyone treats this other than by self-medicating.

Is it possible fibro is what you get when you've burned out all your nerves from years of over-reacting by being in a constant state of fight or flight?

What if fibro and adrenal fatigue are the same thing? Or closely related?

Or do you get one disorder and they just keep stacking?









Quote:


Originally Posted by *coop_mom* 
I've been sick for weeks (think I caught my DS's cold a while back) - I think it's time to start feeling better, who's with me??














:

Me! I've had a cold for over a week. They seem to hang on longer now, ugh. Everyone else sniffled for about 3 days, and I'm still miserable.


----------



## basmom (Jun 4, 2006)

Quote:


Originally Posted by *bigeyes* 
I don't think it's _whining_ to complain that you have a disorder some doctors claim doesn't exist, a lot of people tell you is _all in your head,_ and has completely destroyed your way of life.







:

Please please please don't think I called anyone a whiner







. I agree with you. Sorry if my comment upset you.

Quote:


Originally Posted by *SeekingSerenity* 
I am always doing something and the next thing I know, I'm on the floor practically in tears because I overdid it. I don't want to be unable to do everyday things, so I keep trying to do stuff that I SHOULD be able to accomplish. Then I am in 10 times more pain than before. I *know* I can't do these things, but I also hate it that I can't. I beat myself up constantly and worry that no one believes the pain I'm in.

I can't tell you how many times this was me...


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *basmom* 
Please please please don't think I called anyone a whiner







. I agree with you. Sorry if my comment upset you.


No, I'm more commiserating than anything else. I just meant I didn't think you were whining.

You guys are the only people I really 'talk' to.







I live in the middle of nowhere and I work from home. I see the people at the doctor's office once in a while, the grocery store occasionally if dh doesn't go for me, and maybe the post office once a week.

Being sick wasn't so bad when I at least knew people IRL. It's worse trying to establish a support system in a new community with no work friends or old ties.


----------



## Whistler (Jan 30, 2009)

Hi, joining in here on my 32nd birthday!

I have scoliosis/arthritis in my back and neck, low vision/eye fatigue, exercise-induced asthma, hypoglycemia, migraines and clinical depression. (It's such a relief to read that I am not the only one with such a huge laundry list!) For the most part I like to use natural treatments like chiropractic care and natural supplements to manage it all. I was on anti-depressants for years but was able to switch to St. John's Wort successfully last year. I still deal with chronic pain and fatigue daily.

Something I struggle with is meeting everyone's expectations. But since everything is a "hidden disability" I feel frustrated that I have to ask Hubby for help with the kids and the housework. His family especially are very judgemental and seem to have the attitude that if I would only exercise and eat right all of my problems would go away and I would have tons of energy like they do. They are also trying to get me to take Rxs for everything like the asthma when I don't want meds.

FTR, I do eat well, I exercise and take good care of my body. I also have managed to lose 70 pounds since my DD was born and have hit my target weight, which I am so proud of myself! But it's such a stuggle every day to keep up with the goombas, be there for hubby, take care of the house... and there is never any energy left over. Especially on a day like today when I have a ripper migraine and didn't sleep last night because of the pain.


----------



## LenasMommy (Apr 16, 2007)

I hate that we all can relate with one another due to chronic illness.. I wish no one had to deal with it.







I am 23 years old and have been diagnosed with an Arachnoid Cyst in my brain, Undifferentiated Connective Tissue Disorder (as of now), Chronic PTSD due to childhood abuse, Migraines and Chronic Fatigue Syndrome. I feel like I am falling apart. I am always in pain. It took years for doctors to take me seriously due to my mental health. They always assumed it was my brain making up things. Then they found the cyst and started to listen thank goodness. I have been on Disability for going on 4 years now and to be quite honest, I feel like a complete failure. I'm in my last year of college, but the uncertainty of me being able to hold down a job scares the hell out of me. I'm a single mom, I NEED to take care of my DD. It's such an awful feeling. I've been in counseling since I was 6 years old pretty much non-stop. I've come a long way, but I feel like I have so much farther to go.









I have severe bone pain and night sweats. Very weird blood and urine tests too.. Doctors have no clue what to do with me.. Which is even more depressing.

Sorry to be all whiny, but it's nice to be able to vent to people who might be able to understand.. Although, I wish none of us were in this type of situation.

Thank you for getting this started


----------



## Whistler (Jan 30, 2009)

Quote:


Originally Posted by *LenasMommy* 
I hate that we all can relate with one another due to chronic illness.. I wish no one had to deal with it.

...

Thank you for getting this started

I agree, although finding this thread tonight was actually really liberating to me. Finally, someone who understands.


----------



## basmom (Jun 4, 2006)

Quote:


Originally Posted by *bigeyes* 
No, I'm more commiserating than anything else. I just meant I didn't think you were whining.

Yeah, I guess it's a perspective thing:
I see it as venting
Others see it as whining
WE (this group) see it as commiserating









I'm sorry you don't have a big IRL support system. I AM lucky in that perspective. My parents are local (and awesome), my coworkers would do anything for me, and DS child care provider is a true friend. DH is starting to "get" how hard it is for me just to "maintain" the house/bills/etc, never mind taking on added projects. He really does a lot around the house and loves to spend time with DS.


----------



## coop_mom (Apr 10, 2006)

bigeyes, I certainly wouldn't encourage you to smoke (it just seems like a bad idea, right??) but I am fascinated at how it affect you!

and this thread is totally fine for whining, where else can you find other people who will totally understand what you're going through?? I go to a few online forums where other lupus people hang out, but it's really the illness + the 2-1/2 year old that makes life so complicated

for example...this morning, my LO did not listen to a single.word.I.said -- wouldn't let me change his diaper, and I finally had to haul him up onto the changing table -- like I had the energy for *that*! it really wiped me out for the next 15 minutes

now he's climbing on me, claiming he's now a good boy, trying to get me to let him watch bob the builder...oy

this illness really screws up my life and makes me feel like a bad mama sometimes


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *coop_mom* 
bigeyes, I certainly wouldn't encourage you to smoke (it just seems like a bad idea, right??) but I am fascinated at how it affect you!


It's frustrating. I've resisted re-starting now for 5 years, and I've felt like [email protected] for most of it. A few times I've started feeling better and thought I'd beaten it, then I'd get a cold or something stressful would happen and wham! I'd be sicker than ever. So maybe as I get older there is a stress connection that wasn't there before? It's just so frustrating that when I stopped doing all the stuff that is supposed to be bad for me I got sick.

For literally years I worked in bars, smoked 3 packs of cigarettes a day, drank several nights a week, smoked pot, ate [email protected] food...and I felt fantastic. My cholesterol was fine, blood pressure was fine, I had no aches and pains, went several years with no migraines at all....and this was in between some of the years where I had been having daily headaches.

It makes no sense I could do all the things _you aren't supposed to do_ and be 'healthy' and then start paying attention to my health and spend the next decade being sick. I make a change and notice a slight improvement, think it's working....but no long term total flip-flop into good health. It's hard not to think I may as well be smoking, drinking and eating lots of greasy food, yk?


----------



## Jennifer3141 (Mar 7, 2004)

Hi everyone.

I've watched this thread for a long time, knowing I should probably be here or just pop in to give you all a virtual hug.

I have degenerative disc disease and arthritis localized in my lower back. Sneezing is the most painful thing in the world right now. I've had back pain my entire adult life but recently it has begun affecting my life. There are things I cannot do sometimes like yesterday. I couldn't bend down to pee, even on our handicap toilet. I had to wait for the painkillers to kick in because I couldn't imagine stepping over the tub lip to go in the shower.

My DH works long hours so he is unable to help out at home much. But he's generous with paying others to come in. I'm trying to get the house picked up so we can hire a cleaning lady next week. I can't even imagine attempting to mop the floors right now.

I'm having a hard time being 37 and accepting that I have to let some stuff go. I shouldn't have to do that for 30 more years, right?

And then sometimes I get a reprieve and go without pain for a few days.

The thread about leaving your kids in the car? I've done that. I've had to go to the gas station for milk and I knew that I had one, maybe two more bends in my back before I'd be incapacitated for awhile. I have called DH once when I couldn't bend down to buckle the kids back up. It took him 3 hours to get a break from work to rescue us. (Not to mention that CAFO milk from the gas station was already lowering my nutrition standards!!).

I'm trying to lose some weight to take a bit of pressure off my spine.

All of your stories make me want to open a commune for mamas like us. I'm sorry for all the pain you are all going through.


----------



## LenasMommy (Apr 16, 2007)

Quote:


Originally Posted by *coop_mom* 
this illness really screws up my life and makes me feel like a bad mama sometimes









I can totally relate to this.. I feel so guilty all the time.. especially being a single mom and being sick.


----------



## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *bigeyes* 
Another thing that kills me is, every time I start smoking again, my fibro and adrenal fatigue magically go into _almost_ complete remission.

OMG... I never thought about this... but you are SO RIGHT...







:

Quote:


Originally Posted by *bigeyes* 
I could start smoking again right now, and my weight would stabilize again, I would feel better, my head would clear a little, most of my aches would go away and I would only be mildly impaired instead of almost useless. But I would stink and spend a small fortune every month on cigarettes.

Even though there are a handful of us like this, and some migraine patients like me who also reported fewer migraines when they smoked, NOBODY can tell any of us why this is, or how to replicate the results without smoking.

Hell of a choice, isn't it? Smell great and _feel_ like death, or feel alive, get dirty looks, stink and do something that everyone says is gonna kill you?









Wow. That sucks. I still battle the urge to smoke, but the sheer cost factor is what keeps it from happening. I so cannot afford nearly $5 a pack. But [email protected], you're right... I feel better on so many fronts when I'm one of the social outcasts that exposes the rest of the innocent world to my cancerous fumes.

Quote:


Originally Posted by *coop_mom* 
and for those of you who are weaning due to drugs, if you want to do further research about the safety of whatever drug and BFing, here are a couple great resources:

Motherisk's Home Line - (416) 813-6780
for information about the risk or safety of prescription and over-the-counter drugs, herbal products, chemicals, x-rays, chronic disease and infections during pregnancy. -- very helpful

Kellymom.com - http://kellymom.com/health/index.html

Breastfeeding and Human Lactation Study Center (phone 585-275-0088) at the University of Rochester, NY

Dr. Thomas Hale's books: http://neonatal.ttuhsc.edu/lact/drhalebooks.html

I am totally going to check those out!!!

Quote:


Originally Posted by *bigeyes* 
...Maybe I thrive on chaos. But then when things really fell to he!! a couple of years back I got my sickest ever, so it doesn't seem to make a difference whether I'm stressed or not, single or married, can't find a climate connection since I've lived all over....the only constant I've found is smoking or not, and I notice the effects almost _overnight._...

But I can't justify $60 a week for smokes and there has to be a medical reason why it makes me feel better other than just the cortisol. I thought I was nuts until I started hearing the same thing from other women, most of them either fibro or thyroid patients, so there is a connection there...

...I've also seen adrenal fatigue related to PTSD, so maybe stress causes setbacks? That makes sense. Maybe smoking kept my nerves more level? The thing I read a long time ago that set the bells ringing said something about cortisol stopping the adrenaline rushes, and that seems to be what I was having for most of my life, these rushes of adrenaline that I thought everyone else had, too, only _they didn't._ Since I started taking cortisol I no longer shake when I get upset or angry, and I've done that my entire life as far back as I can remember. I still get sick if I don't eat when I need to, but not like I used to, immediately getting so sick to my stomach I almost threw up if I didn't remember to eat every 2 to 3 hours. Apparently that was all adrenaline and the cortisol balanced that out. When I smoked, it did the same thing. *Now, you go tell a doc you're having those symptoms, and what do they give you? Xanax and antidepressants, which didn't help me at all, just made me sleepy and I still had the same physiological symptoms, caused by excess adrenaline.*

(bold mine) EXACTLY.

Quote:


Originally Posted by *bigeyes* 
For 35 years I was bone thin, ate enough for 3 people, and doctors all thought I had a mental problem and prescribed tranqs and antidepressants.

I'm no rocket scientist, but I don't think it takes one to see the flaws in their reasoning.







: I kinda think I was just a big ball of adrenaline and someone (with medical training) should have seen it before I did, yk? But with all my research I still haven't found where anyone treats this other than by self-medicating.

*Is it possible fibro is what you get when you've burned out all your nerves from years of over-reacting by being in a constant state of fight or flight?*

What if fibro and adrenal fatigue are the same thing? Or closely related?

Or do you get one disorder and they just keep stacking?

Is it too late for you to enroll in medical school so you can be my doctor???!!!

That makes SO MUCH SENSE.


----------



## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *SeekingSerenity* 
OMG... I never thought about this... but you are SO RIGHT...







:

Wow. That sucks. I still battle the urge to smoke, but the sheer cost factor is what keeps it from happening. I so cannot afford nearly $5 a pack. But [email protected], you're right... I feel better on so many fronts when I'm one of the social outcasts that exposes the rest of the innocent world to my cancerous fumes.


I swear, if there were a non-stinky way to smoke, and it didn't cost a bundle, I'd be on it. The health aspects of it are no longer a concern for me because my health totally sucks anyway, yk?







My quality of life is non-existent at this point.

I am totally going to check those out!!!

(bold mine) EXACTLY.

Quote:


Originally Posted by *SeekingSerenity* 
Is it too late for you to enroll in medical school so you can be my doctor???!!!

Lack of funds, poor health, brain fog....







I can't even imagine making an attempt at this point. The funny thing is, I just saw a doctor I really liked last week who actually suggested I start smoking pot again, though he doesn't advocate cigs. But nobody has come up with an answer for the reason why smoking cigarettes made such a difference in the way I felt.

It's too bad they're so nasty. I smell them on other people now and go EWWW! so I know I don't want to smell like that, but there has to be _some other way_ to get _whatever it was_ I was getting from them.


----------



## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *bigeyes* 
...My quality of life is non-existent at this point.

Yeah. I know. I have another bad headache today. The doc gave me an RX for Topamax, but I can't afford to go pick it up from the pharmacy until next week. And I am leery about it anyway because she said it's an anti-seizure drug. I know the migraine-dose is way lower than the anti-seizure dose, but I had a _really, really_ bad experience with Neurontin about 10 years ago and now I am scared s*&#less about seizure drugs.

Doesn't help that my kids have all three been sick for almost a whole week and DD has decided that today is her day to lay on my lap and whine for hours straight. It's raining so every part of me aches. I have the energy of roadkill. I am going crazy.


----------



## NikonMama (Jan 8, 2008)

Quote:


Originally Posted by *lucky_mia* 
I'm in. My diagnosis is Addison's Disease/Adrenal Insufficiency along with hypothyroidism.

The Prendisone I have to take sent me into a major depressive state so I started an SSRI. It seems to be helping. I also have been dealing with vertigo lately. A brain MRI was clear so hopefully it will resolve soon. So dealing wtih all that plus working about 30 hours a week and mothering my 3-year old twins .

Yesterday was a good day, today, not so good.









Have you tried switching to Hydrocortisone instead of Prednisone? I have Addison's also and the pred made me severely depressed and gave me anger/rage issues. As soon as I switched to Hydrocortisone it resolved and I've been fine since. I get depressed every now and then, but that is mainly due to personal issues rather than my medication.


----------



## basmom (Jun 4, 2006)

Quote:


Originally Posted by *NikonMama* 
.... the pred made me severely depressed and gave me anger/rage issues. As soon as I switched to Hydrocortisone it resolved and I've been fine since. I get depressed every now and then, but that is mainly due to personal issues rather than my medication.

Oh yeah, the prednisone made me a very un-nice person! It really stunk because it actually made my pain better in that initial few weeks..so while my body started to feel better, my mind was all up in arms!

...and for some encouraging news from my RA front...
I was doing Enbrel injections and 20mg of Methotrexate (originally)...I have been feeling good over the past 6 months and my rheumy has given me the green light to slowly reduce the methotrexate. At my last follow-up, we decided to try 8mg (3 pills vs. the 8 of my original dose a year ago)

Keep your fingers crossed for me, please!


----------



## Jennifer3141 (Mar 7, 2004)

Quote:


Originally Posted by *basmom* 

Keep your fingers crossed for me, please!

You got it! How long will it be before you know if it's working?


----------



## basmom (Jun 4, 2006)

Well...I forgot/didn't have the ambition to refill my Meth. prescription for about 3 weeks (hello brain fog - chalk that up to the hypothroidism) and started to flare (this was before the Enbrel was added). I would think maye 2-3 weeks?


----------



## superstella (Aug 25, 2006)

So much of what you guys have said rings true for me too. My dx is in my siggy, idiopathic pulmonary fibrosis, and is terminal. Recently, however, the progression of the fibrosing has stopped and so I'm holding steady and hopeful for the moment. I too have good days and bad days, and some days I need to carry an oxygen tank with me - other days I breathe okay on "room air". Actually, thankfully, more days than not I can do without the o2 except when sleeping. I do get out of breath and tired soooooo easily. I'm on prednisone too, but only 15mg per day now. I've been on fairly high doses and hate hate hate the side effects but if it keeps me alive I guess it is worth it.

I have 5 kidlets, and my oldest is celebrating his 17th birthday TODAY! My youngest is 2.


----------



## LucyVP (Sep 11, 2007)

Hi. I hope no one minds me joining in, even though I am not a mom. I'm 34 years old and have been thinking about whether or not I want to have children in the future, but am worried about how my health issues will impact this decision (or even make it impossible - who knows).

Anyway, I have a partial low spinal cord injury, which keeps me from being able to walk so I use a wheelchair to get around. The injury also causes chronic nerve pain in my legs and feet, which is the worst part of it, to tell the truth. I am currently working full time and get by OK, but I am pretty tired after a full day and the pain seems to get worse in the evenings. I'm on quite a bit of medication too.

At this stage of my life I don't even know for sure about the issue of kids, but I find it helpful to hear about how other people with injuries or chronic illness handle their families. I don't want to have a child/children and then be a sucky mom. I think I'd definitely have to stop working outside the home or cutting back if I had kids, so money also is an issue.

I hope me posting is OK! I learn a lot on this forum but feel weird to post much or at all.


----------



## coop_mom (Apr 10, 2006)

Quote:


Originally Posted by *LucyVP* 
I hope me posting is OK! I learn a lot on this forum but feel weird to post much or at all.









of course it's ok, all are welcome (well, all *nice* people







anyways...)

hopefully the info in this thread can help you if you're someday trying to make a decision about having a baby...

I didn't get sick until about a year after I had my son so I didn't have that difficult decision to make









basmom, good luck with reducing your meds, that's so great!

I'm on 20mgs prednisone, too, and luckily am not having noticeable side effects this time (I was on 40 in the past, and was a crazy raveneously hungry non-sleeping chatterbox that time...) - I'm hoping to get off the pred soon, but I don't really want to go off it until I stop waking up every morning with every muscle hurting in my body







:

--kristin
mom to Simon, 8/30/06
diagnosed with lupus, sept. 2007


----------



## foodymama (Feb 5, 2009)

[QUOTE
At this stage of my life I don't even know for sure about the issue of kids, but I find it helpful to hear about how other people with injuries or chronic illness handle their families. I don't want to have a child/children and then be a sucky mom. I think I'd definitely have to stop working outside the home or cutting back if I had kids, so money also is an issue.

I hope me posting is OK! I learn a lot on this forum but feel weird to post much or at all.







[/QUOTE]

Welcome! I'm new to this thread too. I was dx with rheumatoid arthritis 19 years ago and I am 31. I had my first DD in June of last year and boy was it a struggle to get information from my rheumatoligist on the prospect of even thinking of having children. I couldn't get information or questions answered anywhere. I didn't find this community until DD was a few months old but if I would have known about it sooner I would be doing exactly what you are doing in order to get info. Good luck and I hope this thread provides you with help!


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## foodymama (Feb 5, 2009)

So I'm interested in what types of activities you do with your children on really bad painful days. How do you remain involved?


----------



## Sharon RN (Sep 6, 2006)

I feel horrible today. I feel like I've been the worst mom to my ds. Tired, short-tempered. Blah.

This pregnancy is NOT making me feel better at all. I've lost like 12-15 pounds so far, and while the nausea is gone, the continuous vomitting isn't and I just don't know how much longer I can take it.

I'm sorry I just had to get this all out. My DH made us all take this trip to Maryland to visit some friends for a week, and it took all my energy and more I didn't have.

I'm just so tired of being sick.


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## angie7 (Apr 23, 2007)

Found out I need hip surgery yesterday. I have *another* rare condition







Turns out this type of surgery has only been performed 2,000 times!!! Great, wonderful, sign me up









So now that leaves me with 2 very rare neurological diseases, Cervical Kyphosis, Deg Disc Disease, Scoliosis, hypotension, and this rare hip problem...Did I tell you that I'm only 29? ugh!


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## Violet2 (Apr 26, 2007)

Quote:


Originally Posted by *foodymama* 
So I'm interested in what types of activities you do with your children on really bad painful days. How do you remain involved?

I try to be really prepared with activities and things to do. I am always on the lookout for cheap and easy activities. This week I made DD a tactile box with rice and spoons and rocks and shells and beads and feathers. She can practice scooping and filling cups.

With colds, she likes to take the Kleenex and pull them out so I get a box and she gets a box.







(ETA: I know most people don't worry so much about colds, but for an asthmatic they are a problem and it's illness that flares my asthma.).

I find it's important to have an arsenal on hand. Sometimes DD does well if I am sick, sometimes not. Fortunately, I have not yet been seriously ill in her lifetime. For some reason, I got the stomach flu but no one else did and I was just down for the count. I really was in a fog of flu, really out of it. All I could do was hug DD when she wanted attention,but she did well with that.

My biggest issue at the moment is muscle pain, a legacy form my reaction to steroids. My forearms are a mess and I think I have tendinitis now in the elbows from caring for DD. I need to look into braces or some other support.

V


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## coop_mom (Apr 10, 2006)

sharon, sorry you're feeling crappy,







and hope you feel better soon!

foodymama, I have to admit that I do more TV than I would like...but with being ill, sometimes I'm just not up to supervising a 2-1/2 year old at play, especially if he's being clingy...I don't like it, but we just do the best we can









I'm finally feeling a little better, I had such a blah month, feeling crappy and zero energy

lots of stress going on, too...dh and I have our own natural parenting shop in NJ, and we finally decided to close it...between the disasterous economy, my illness, and raising a 2-1/2 year old, we just decided it was too much stress and not worth it...but closing the store itself adds stress, I'll be glad when it's all over (March 28th can't come soon enough







-- man is it hard to have to explain to every disappointed customer who comes in why we're closing (I suppose I don't *have* to explain, but I have a big mouth









hope everyone is hanging in there! I'm happy spring is here, though it makes me sad, too, because one of the features of lupus is sun sensitivity







so I can't play outside as much as I would want


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## William's Mom (Oct 6, 2004)

Yay! I'm happy to be here! Well, not happy to be sick... but happy to have found this tribe. I've been looking for it, and Kristen pointed me in the right direction! (Thanks Kristen!)

Here is what I had posted this morning on the old thread. Glad to have found the new one!

----

Quote:


Originally Posted by *William's Mom* 
Is this tribe still active? I've been looking for you all! I'd still like to keep in touch.

Is there a new chronically ill tribe thread that we're posting on? I posted a question in "Finding Your Tribe" this morning, before I found this old thread!

How is everyone? I'd love to hear updates...

I'm still very sick, fighting the chronic nausea and pain of the pancreatitis and SOD. Also still trying to figure out what's up with my bilaterally abnormal mammogram, and I have a follow-up for that in a couple of weeks. Also still dealing with the endometriosis, ovarian cysts, and pelvic pain. I had another surgery this past January to address that. Jury is still out on whether it was successful. And lastly, still have the asthma and blood disorder issues. Fun, fun.









So in spite of all the medical issues, I'm still trying to live as natural a life as I can. To keep my mind off things, my ds and I are planning what kind of garden we'll be raising. Also in the fall, we plan to start homeschooling kindergarten, even though I work outside the home part time. I have an excellent support system set up, though. So even though I'm stretched in a lot of different directions, I refuse to let these sicknesses rule my life. I'm doing what I can, day by day.

Sending







and







: to everyone.


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## SevenVeils (Aug 28, 2006)

Quote:


Originally Posted by *Amylcd* 
Joining in. I have hemolytic anemia, which definitely makes life difficult with a toddler! Some days are worse than others... I'm out of breath all of the time, there are days when the fatigue is so bad I can barely get out of bed. I have been known to randomly passout (from lack of oxygen). These are the everyday symptoms, ultimately, I'm looking at heart failure as a very real possibility in my future. I have lived with this my whole life, but it was not until I was pregnant with my last child that I got a diagnosis.

On a good day, my hemoglobin level will be 7. I can not remember a time when it was above that. It's not as simple as taking iron for me... I actually received IV iron infusions every week for 3 months, and it made no difference in my levels. It's frustrating when people suggest I eat more "iron". I wish that was all it took! Right now I'm looking at my only treatment being blood transfusions (mulitple, as they are just a temporary "fix")

I have three girls - a soon to be 7 year old, 5 years old, and the baby will be 2 next month!

Amy, I have this too. Mine is autoimmune, but I only developed it about 3.5 years ago. PM me if you would like to, I might forget to come back to this thread as I am apparently a creature of habit lately.


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## coop_mom (Apr 10, 2006)

hi all, how's everyone doing?

I'm finally feeling a little better, started tapering my prednisone today, so let's hope I continue feeling better...I started tapering because I'm turing back into "buzzy kristin" - I get a bit spazzy and talk a mile a minute! oy

I'm feeling a bit annoyed because like my lupus pain isn't enough, now my old back pain I used to have has come back and it hurts *a lot* - I almost couldn't walk the other day -- I'm sure it came back because I was feeling better so I have been carrying my son more, jeesh!

hope people are doing well, is everyone happy that spring is (almost) here??


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## Phoenix~Mama (Dec 24, 2007)

Hello! I can relate to so many posts here! I have fibromyalgia and bi polar disorder.

I have been really beating myself up lately with how little I have been able to get done. My fibro went into a flare up after DD was born, wich I pretty much expected to happen. It's been pretty rough but thank God for being able to nurse lying down!







DD and I can snuggle up all night long and I just periodically switch sides. She is so happy too. And it's so cute as she has just started reaching out to help guide the breast to her mouth and she holds on.... just precious and that pretty much helps melt away any frustrations from pushing through the day.


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## ReadingMama (Mar 13, 2007)

Hello everyone! Here's my laundry list:

Crohn's disease
IBS and lactose intolerance
Crohn's-related arthritis
fibromyalgia (secondary to Crohn's)
clinical Sjogren's syndrome (but had a negative blood test)
polycystic ovarian syndrome
obsessive compulsive disorder
bipolar disorder

It took years of symptoms, tests, hospitalizations and surgeries to get the right diagnoses and treatments, but now I live a pretty functional life. I'm really grateful for that. If I hadn't had all those years of struggle, I wouldn't be as appreciative of the relative stability I have now. I have always been med-compliant. My motivation is my 9 year old son. I want to be healthy and stable for him.

What I struggle with the most are IBS symptoms, fatigue, and periodic episodes of muscle and joint pain. Crohn's stays in remission as long as I stay on my Remicade schedule. The irony is that some of my suffering is self-inflicted. I eat dairy even though it causes lots of pain and time in the bathroom. I don't know why I keep eating it. The fatigue and pain are triggered by infections--and I get lots of sinus infections now that I'm on Remicade. Remicade is the only medication that has worked to keep Crohn's in remission though. Prior to that, I had bowel obstructions and resection surgeries due to inflammation and scarring. So I take the Remicade and just deal with the sinus infections and resulting fatigue and pain.

I'm looking forward to getting to know you all.


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## coop_mom (Apr 10, 2006)

Quote:


Originally Posted by *JSMa* 
I have been really beating myself up lately with how little I have been able to get done.

I used to do that, too, but don't any more!







I really re-evaluated what I "needed" to get done in a day, and decided that if I spent a good day taking care of my son, then that was enough!







: Of course, my house is not as organized or clean as I would like, and sometimes we eat the most random hodge podge of food for dinner, but I don't really care









ReadingMama, that's quite a list! And I'm totally with you on the dairy...I think it's an addiction for me...I get stomach issues when I eat it, too, but I still love it love it







I was off dairy for 2 years while nursing my son, but when I reintroduced, it's like I want to eat it all.the.time! I try and refrain, but...

And it's great your meds control your stuff...I'm still working on finding a good balance of meds, nutrition, supplements, acupuncture etc (phew, it is really tiring thinking of all this







)

take care all, it's a gloomy rainy day here, I'm trying to stay cozy!


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## basmom (Jun 4, 2006)

Quote:


Originally Posted by *coop_mom* 
ReadingMama, that's quite a list! And I'm totally with you on the dairy...I think it's an addiction for me...I get stomach issues when I eat it, too, but I still love it love it







I was off dairy for 2 years while nursing my son, but when I reintroduced, it's like I want to eat it all.the.time! I try and refrain, but...

And it's great your meds control your stuff...I'm still working on finding a good balance of meds, nutrition, supplements, acupuncture etc (phew, it is really tiring thinking of all this







)

take care all, it's a gloomy rainy day here, I'm trying to stay cozy!

I love dairy, but dairy doesn't love me. Yet- I continue to eat it...

And finding a balance with meds, supplements, acupuncture, etc is dizzying, but worth the work when you can do it. It is so hard to want to use all natural products, eats healthy foods and do what's right for my body, when the thing that makes me feel good is drug that has the potential to destroy my liver or leave me open to a serious infection.

Today started sunny, but ended gloomily (rain started at 5:00)

I'm on week three of decreasing one of my meds and so far so good....


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## SeekingSerenity (Aug 6, 2006)

Hi everyone, just checking in.

I had a migraine yesterday, wasn't that fun.







: Got nothing done and by the evening I felt like a waste of space. Not exactly something I could help, but you know that feeling.

I had the doc write scripts for Topamax, which is supposed to help the headaches, and Cymbalta which is supposed to help with the depression and fibro pain, but I haven't been able to go to the pharmacy to get them filled! Fifty dollars is my part of the co-pay and I have not had that much just lying around. So, still plugging along here with the usual complaints.

However, I must say I am thrilled to report that my vitamin-D treatment, now in week 7 of 8, seems to have had a positive effect on my hand/wrist pain! Though my fingers still occasionally ache and I get twinges in my wrists, I am not in the horrible, constant hand-pain that I've suffered for the most part of the last 4 years. The rheumy was hoping (though it was a long shot) that the Vit-D deficiency was the root cause of ALL the pain and fatigue, but no such luck. I'm still limping around in agony with my knees, back and hips, and curled up in a fatigue-riddled ball more often than not.

But counting blessings here... I can open the peanut butter without wanting to cry now!!!







:


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## ReadingMama (Mar 13, 2007)

Quote:


Originally Posted by *SeekingSerenity* 
However, I must say I am thrilled to report that my vitamin-D treatment, now in week 7 of 8, seems to have had a positive effect on my hand/wrist pain! Though my fingers still occasionally ache and I get twinges in my wrists, I am not in the horrible, constant hand-pain that I've suffered for the most part of the last 4 years. The rheumy was hoping (though it was a long shot) that the Vit-D deficiency was the root cause of ALL the pain and fatigue, but no such luck. I'm still limping around in agony with my knees, back and hips, and curled up in a fatigue-riddled ball more often than not.

Wow, me too! I have 2 more monthly prescription vitamin D supplements to take (having finished the weekly ones) and my wrist pain has gone away too. Before my PCP mentioned it, I didn't know that a vit D deficiency can cause body pain. I hadn't ever had wrist pain before, so I thought I had carpal tunnel syndrome, but my nerve tests were normal. I forgot to mention the vit D deficiency in my laundry list! I also have B-12 anemia and take shots once a month for that. That's Crohn's-related like most everything else. Gotta love autoimmunity!

I have another sinus infection, so I'm dealing with fatigue and sore joints and muscles now. And it's cold and rainy. Bleh.


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## tropicaldutchtulip (Jul 26, 2007)

I have MS and now they think my leukemia is coming back. So I have really struggled with health issues for the past year or so. I have almost 34 month old identical twin girls and we are starting our first cycle with our surrogate in about 4 weeks!


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## SleepyMamaBear (Jun 5, 2005)

can i join too?
i have fibromyalgia, bipolar disorder, chronic migraines, and ibs.
i live my life in pain, every moment of my life, including sleep, when i can sleep, i am hurting so bad that i often wake in the middle of the night crying in pain, even though i take my pain meds before i get into bed.
my Dr prescribes 60 pills of vicodin each month, and has on the label "take up to three time a day" but i have to limit myself to two, because i only get 60 per 30 days







so for many many hours i am in excruciating pain. the only other thing that helps partially is medical cannabis. and i am too poor to afford my card right now.


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## ReadingMama (Mar 13, 2007)

Quote:


Originally Posted by *tropicaldutchtulip* 
I have MS and now they think my leukemia is coming back. So I have really struggled with health issues for the past year or so. I have almost 34 month old identical twin girls and we are starting our first cycle with our surrogate in about 4 weeks!

Wow. I will be praying for you for complete and total healing, and for the energy to take care of your soon-to-be-expanding brood!









Tiffany, I'm sorry you're in so much pain. It sounds like your pain isn't being managed with the medication you're on. Have you been to a pain specialist?


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## SleepyMamaBear (Jun 5, 2005)

no, they want me to wait 6 more months before i go see a pain specialist.







: meanwhile i am in pain all the time, and they asked me to sign a narcotics agreement. for vicodin. something that barely touches the pain.
i think that they think i am a pill junky. except i HATE taking pills to alleviate pain, and depression, etc. i would MUCH rather have complete all natural resources to help me. unfortunately nothing i have found helps completely.


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## ReadingMama (Mar 13, 2007)

Tiffany,

I'm on tramadol for pain. It's sometimes prescribed for fibromyalgia. I know people who do really well on Cymbalta. Not only is their depression treated, but they find a noticable difference in their pain. You might ask about trying this in addition to pain meds, and then trying to wean off the pain meds over time.


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## Whistler (Jan 30, 2009)

I had a WONDERFUL thing happen! My chiropractor, who I see for the scoliosis pain, asked about my migraines. Although they seem to be mostly hormonal and follow my cycle, she said that a lot of the pain was coming from my jaw, oddly enough. I am apparently carrying stress there. She suggested I buy a gel-style mouth guard to wear at night to keep me from clenching my teeth. I did about three weeks ago and this month at migraine time I had a 1/2 day mild migraine instead of a three-day whopper! WOOO HOOOO!!!! I am not convinced totally yet, but it gives me hope!


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## SleepyMamaBear (Jun 5, 2005)

RM, we want to try cymbalta for me after Niamh weans, but that doesnt look like its happening soon.


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## mamamoon3 (Jul 12, 2005)

hello, all you fabulously inspiring mamas!

well, unfortunately, i seem to qualify for the tribe! it seems like a great place to be, though.

i'm the mama of two precious girls, ages 10 & 6. i've been experiencing some mysterious form of "chronic pain" (for lack of a better term) since shortly after my second dd was born. Six years in, and i still have no idea what it is, no official diagnosis, and haven't found a single thing that helps relieve the intensity of what my body is going through. Most of the time, it is 24/7, with no relief in sight, and an intensity which truly makes me insane...and then, once in a blue moon, it will spontaneously disappear, and i'll have a few minutes, a few hours, or perhaps ever a few days of respite. I have driven myself insane, and beyond, trying to figure this out (what it is, what is causing it, why it won't respond to anything i've tried, etc.). I have baffled doctors, chiropractors, accupuncturists, massage therapists, chaniosacral therapists, homeopaths, herbologists, natural healers....a very long list of practitioners, and nobody is able to figure this out. Even the simplest of things can trigger it...getting out of bed, rolling over, reaching to turn out the light, getting dressed, undressed, picking up something on the floor that's dropped, reaching to get something in the cupboard, snuggling with my dd's, hugging (this TRULY sucks), carrying anything, picking up anything, sitting down, getting up out of a chair, sneezing, coughing, anything that startles me (the automatic response to quickly turn your head to look at whatever made the loud noise, etc.), stretching, turing the key in my front door, sitting, standing, lying down, basically ANY position other than sitting absolutely still & straight, with no movement whatsoever...the list goes on and on ad nauseum! Every aspect of my life is affected by this. It prevents me from doing all the things i most enjoy in life. It affects my relationships, with friends and my family.

The hardest part of all is the effect its had on my dd's. They are incredibly understanding, and supportive, and nurturing (of course, i SWORE i would never turn my children into MY caregivers...my worst nightmare has come true!). And they have modified their entire existence to try not to do something that would trigger my "pain" even more. Of course, accidents happen ALL the time...all it takes is a little nudge the wrong way, or someone dropping something accidentally, or an overzealous hug or cuddle that leads to a bad movement for me...i feel like they live in a prison when they are around me. Everyone treats me with kid gloves, trying not to make things even worse than they already are. It feels like such an unnatural life for children to live this way! They are always trying to do things to protect me, to help me (they carry the bags, they open the doors, they do all the stuff i can't manage on my own). They are absolutely awesome, but yet i can't help but bear the overwhelming guilt of not being the mama i want to be with them. I can rarely play with them, i certainly can't sit on the floor with them, or just be in the moment with whatever they are doing. I carried both of my babies on my body for FOREVER and a day, did extended bf'ing, family bed, the whole deal. Now, i find myself desperate to create space between us, just to avoid any accidental bumps or whatever that will set my body off. Its a horrible feeling, and goes against what every cell in my body truly wants to do. I want to be with my girls, i want to hold them, to be close to them, to play with them, to enjoy them, laugh with them, to feel joy with them. This body of mine robs me of all of that. It robs me of all the things that bring me joy in my life.

So, what IS this mystery thing?? I really have no answer to that. Part of my ongoing frustration is that its SO difficult to explain to anyone. I call it "chronic pain" for lack of a better term, and because "pain" is the only word that people seem to be able to relate to. As soon as i drop the word "pain" from my description, people seem to immediately go down the road of doubting what i'm saying, not believing the immense intensity of it, chalking it all up to stress (don't you just LOVE that one!), and basically dismissing it as anything 'real'. Believe me, i have had many days where i question my own sanity, wondering if i am totally imagining this whole thing. But when the intensity hits me, to the point of incapacitating hell, i know, without a doubt, that this is truly real. I guess that's the nature of these chronic conditions...it starts to mess with your mind. I would define myself as someone with incredibly strong intuition, a healthy self-image, and a lot of strength, but when it comes to THIS, its all out the window. I doubt myself, i feel ridden with failure, hopelessness, powerlessness, guilt, and at times, i loathe myself and my body. I feel like two different people. This condition, whatever it is, has totally changed who i am. I ache inside, for the woman that i know is lying dormant inside of me, aching to come alive again, churning to be heard and understood, and most of all, healed. I can not bear the idea of living the rest of my life trapped in this hellish existence.

My latest theory is that there's something neurological going on. I used to think i was simply an alignment thing, and that my body just couldn't keep itself structurally stable. I still feel that this is an issue, the way that i can SO easily be reinjured, over and over again. I do have some fairly advanced degeneration of several vertebrae, both cervical (neck) and thoracic (upper back). I'm sure this is partly what contributes to it, but i'm convinced that there is something WAY beyond this. The intensity of what goes on in my body is so extreme at times that i literally feel like i'm going insane. Its like my neural pathways are totally going ballistic. I get these surges that rush through me and there is no stopping them. Its like every nerve in my body is firing full tilt and can't stop. I have no idea what brings it on or how to stop it. I feel nauseous (but not to the point of throwing up...its a strange nausea), off balance (although i don't fall over or lose my balance...but my sense of equilibrium is totally out of whack). The pressure is often unbearable. It can come and go and change totally unexpectedly. And yet, often, it just never leaves. It starts with the slightest, almost undetectable sensation in my neck/upper back area...i call them 'niggleys'...and when i feel that, i just know that its on its way to intensifying to the point of total overwhelm. Anytime i try to explain this to a practitioner, they look at me like i'm a lunatic. Maybe i just imagine this reaction, or have come to expect it based on so many bad experiences. Its so difficult to be doubted, questioned, dismissed. If they don't immediately know what my issue is, their egos tend to get WAY overinflated and they want to ditch me, so that they don't have to look bad. UGH!

The worst part of ALL of this, is that as soon as i start venting about it (like now), i beat myself up for being negative, for not being positive, for coming across as a 'victim', oh-woe-is-me, pathetic complainer. And yet, the truth is, i feel trapped. I feel desperate. I feel scared out of my mind. I feel really, really alone.

I really need to find some compassion for myself. But i really struggle with this...can't quite figure out why, cuz logically, i know that its not my fault and i'm doing everything i can to get through each day. Yet, i still find ways to be really, really hard on myself.

The past month or two has been particularly difficult for me. I think i've reached the crisis point...the place where i'm starting to give up. I'm losing hope. I'm feeling like i desperately need help, but i have no where to turn. I don't have anyone i can fully put my trust in, when it comes to my health and well being. I've been disappointed SO many times by people that call themselves healing professionals. I am terrified of allopathic medicine...its truly not my comfort zone. I am totally inclined toward natural healing. I've tried SO many things, and nothing gives me any kind of lasting relief. I used to go several times a week to my chiropractor, simply to have 5 minutes of respite from the craziness i feel. That's how desperate i was. I would spend HOURS driving and sitting in waiting rooms (uncomfortably so), waiting to see these supposed healing gurus, but to no avail. I'd be back to square one, or often WORSE, within minutes of leaving their office.

I believe that body's are designed to HEAL, not to self-destruct. So, why can't my body heal???

I guess what i'm really hoping for tonight is some hope. I have no idea what that would even look like to me right now. I just know that i'm really hitting the wall here, feeling truly alone, terribly scared, and not having a clue where to turn. I am open to ANY wisdom that comes my way.

What do you all do to get by? How do YOU do it? I know how unbearably hard it is for each and every one of you. How do you keep going, after years of this wearing down your body and mind and spirit? I'm so tired of the struggle. I don't just want to plod along through life, feeling like my life is over. That the best years are behind me. That its all downhill from now on. I can't bear to exist this way. I need to dig deep and find myself a WHOLE lot of strength. I want to be healthy. I want to thrive. I want to be ALL that i can be. But how???

Thank you so much for your listening ears. I know you got a HUMONGOUS earful tonight!

Hey, its great meeting you all...for better or worse, here i am!

rest well, y'all!

~mamamoon3


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## Phoenix~Mama (Dec 24, 2007)

lol... I know all about eating hodge podge dinners. I'm so bad at making food for myself at night.


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## SeekingSerenity (Aug 6, 2006)

Mamamoon3, welcome! I am so sorry you have to be here, and I am also sorry to hear about everything you have to go through!!! It sounds like a living h#ll. My heart goes out to you and I wish I could give you some advice, but I don't have any experience with that type of problem.









As for me, I've been totally steamrolled with migraines and fatigue lately. I got the mother of all migraines last weekend and could barely function for two days. The thing is, I finally started taking the Topamax to prevent these things, and I totally HATE the stuff. The side effects are worse than the dam headaches. It makes me woozy and shaky, makes my legs all trembly and just gives me an overall feeling of ugh. Maybe it'll go away with time, but geez. I deal with enough fatigue without the meds causing more.

Which leads to my next question, what do you fibro/RA/lupus/etc. mamas do with the fatigue when it hits and the babies need you? I've been so wiped out lately. This morning I spread a "picnic" out on the living room floor and put on some DVDs (thanks to the Goddess for that 5-disc changer - and the kids know how to use it) and I laid down on the blanket while Lil' Man sat next to me and played. The other two watched movies and had a picnic with the baby while I dozed off and on, I just couldn't do much else, my whole body hurt and I was so, so tired. Finally I was able to get up and start functioning somewhat and now DS is reading, DD is playing Polly Pockets and Lil' Man is in the walker... but I'm looking at the dishes and this pile of clothes I need to fold and my heart's just sinking. I still have homework, too. How do YOU cope? Today's the worst in a long time with the fatigue.

This is when the thoughts come in that sometimes the fatigue is worse than the pain. There's meds for the pain (well, for some, I don't have any














but what do you take for this feeling of having been hit by a truck?

Dragging myself off to the kitchen to make lunch now...







:


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## coop_mom (Apr 10, 2006)

hey mamamoon, welcome

that WAS an earful, but you write so well and your story is engaging...I'm so sorry that you are going through such bizarre pain with no diagnosis...that must just make everything worse!

I'm not sure what to tell you about where to find hope, I'm often on the fence there myself This thread may be a good place to start, a place where you can find others with sympathetic ears, and people who know what you're going through and can offer lots of
















I was diagnosed with lupus a year and a half ago, so I'm pretty new to the chronic illness deal. It was a tough winter, but I'm feeling better now. I recently had to choose a health care path...my doctor recommended I start an immunosuppressant drug, and I just wasn't ready to go there. I was lucky because I had recently closed my business, so I was able to make some lifestyle changes that I hope will help my health improve - more time to do yoga and relax, was able to add additional acupuncture appointment etc.

Anyway, glad you found us









Serenity - to answer your question, I do admit to relying more on the TV than I would like. But on days when I'm just too beat to play, Bob the Builder is just so helpful!

***

One thing that I am working on myself is revising my personal expectations. I have always been a total type A personality, taking a billion classes at school, working at least one if not more jobs etc. and my expectations of myself were through the roof. My illness has really forced me to take a step back and re-think what's really important in life. For the first time in my life right now, I am not working. I am shocked to find myself as a stay-at-home mom, a position that I really never saw myself in. I have mixed feelings about it; I love staying home with my son, but am still drawn to working...hopefully I will come to some sort of balance









That is my primary goal these days - seeking balance both spiritually and physically.

take care everyone









--kristin
mom to simon, 8/30/06


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## Amylcd (Jun 16, 2005)

Today is an extremely bad day health wise for me. I feel miserable. I am so dizzy and lightheaded. All I want to do is sleep. I really wish I had someone here to help me with the kids today, one of my biggest fears is passing out while caring for them. The older two know how to dial 911 of course, but still, it would be terrifying for them.


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## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *Amylcd* 
Today is an extremely bad day health wise for me. I feel miserable. I am so dizzy and lightheaded. All I want to do is sleep. I really wish I had someone here to help me with the kids today, one of my biggest fears is passing out while caring for them. The older two know how to dial 911 of course, but still, it would be terrifying for them.




















Be gentle with yourself, mama....


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## SativaStarr (Jul 16, 2007)

Hi, Im Amanda.. Mama to a 3 yo lil guy, a 2 yo lil girl, and a 5 mo old lil boy who was born at 32 weeks after 8 weeks of hospital bedrest with lots of nasty anti-labor drugs :yuck: Unfortunately he also has lots of medical problems of his own including developmental delays.

I was diagnosed with fibromyalgia about 2 years ago, and also suffer from depression, severe anxiety, and chronic migraines.

I love my kids dearly but its struggle raising 3 kids 3 and under with chronic illness and a not so understanding husband.


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## bigeyes (Apr 5, 2007)

I can't remember if I posted to this thread or not, but for years they have given me nasty prescription drugs to try to fight my migraines and help me sleep. I have a weird sleep disorder I believe is related to the fibro, where I don't reach the REM state, and when my sleep is disrupted I get more migraines.

Every drug they have given me to make me sleep has given me icky side effects, usually more brain fog or lethargy, which most fibro sufferers know you don't need as those are already symptoms we have. I recently switched from prescription drugs to taking 5 HTP am and pm, and L tryptophan and melatonin at night, and the results have been pretty amazing. My migraines have really dropped off a lot, except for this week which has been unusually stressful with some drama from the kids and some sulfur blowing our way from the volcano which is a new trigger I discovered after we moved to Hawaii, _yay._ Luckily the winds usually blow it the other way, but on rare occasions the wind patterns change and it comes toward us, and these 2 things happened to coincide this week.









There are some people in my thyroid group who swear their fibro symptoms completely went away once their thyroid and adrenal issues were properly treated, but either I have not found the magic combination for mine or that isn't quite true, I haven't decided which. It seems like every little thing I try helps a little, and I make some progress, but stress will knock me flat on my back every time.

Dh is going to be gone for 2 weeks in May to help my ILs finish their move here, which is going to help us a lot once they are _here,_ but I honestly do not know how I'm going to manage without him here during those 2 weeks.
They do so much for us we really can't tell them no and I'm hoping we don't have any serious drama while he's gone.







I'm just dreading it.


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## DQmom (Apr 19, 2009)

I have chronic pancreatitis, Hep C, both of my hips operated on from necrosis in each of my thigh bones. I have necrosis in both of my shoulders. Chronic pain. Buldging disks in my neck and lower lumbar. I take care of my 15 year old son and he helps me take care of my 2 and 3 year old girls


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## K1329 (Apr 6, 2009)

****


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## octobher (Apr 19, 2009)

Hiya







I'm Rae, mama to 3 girls ages 13, 9 and 18 months. I was diagnosed with APS (antiphospholipid antibody syndrome) during my pregnancy. There is no cure, it is very rare and hasn't been researched much. My daily "symptoms" mimic MS...I recently was told that there are several people who have been diagnosed with MS that actually have APS. I recently had bloodwork done to see if I have lupus, as my hemotologist believes I do.

My husband has been awesome. He knows if I am having a day with just no energy and he will do it all without me even asking. Some days are really hard with the baby but we all make it through don't we


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## kierenm (Apr 21, 2009)

Thanks for your thread. I can resonate with the dificulty you have with a chronic illness- I've had chronic fatigue syndrome for more than two yrs now and have had to turn my life around to accomodate, losing my career and starting my own home businesses.

So yea, I hope you can feel better, I'm wishing you and others who've posted in this thread all the best..

Kieren


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## octobermom (Aug 31, 2005)

I'm a mom of one and still have hope of another. I have type 1 diabetes which most days you'd hardly know minus the figer sticks and needle jabs other days though its a huge pain I hate having to deny my child promoised outtings cause my sugars are too high or too low. I've passed out in front of her several times







shes seen some bad hypo reactions. I of course also fear her developing it one day.

Deanna


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## mamamoon3 (Jul 12, 2005)

hello all! just dropping in to say a HUGE heartful thank you to SeekingSerenity & coop_mom for your sweet, welcoming reply to my post. I can't find the words to tell you how much it means to me to hear your words of support, and simply for listening to me ramble on and on. I think i REALLY needed to download that night i posted (can you tell? LOL).







I am SO grateful to have found a safe place to do so. Its a great feeling to know that i am not alone in this misery, and at the same time, i am so deeply sorry that so many other mamas out there are struggling and hurting. I've read each and every one of your stories, and i just ache, knowing the challenges you all face on a daily basis. Maybe together we will find strength to get through what we need to get through, and perhaps even find a way to reach beyond to a much brighter, more joyful existence.







:







:







:







:







:

you seem like a remarkable group of women...thank you for being here







)


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## mommabear207 (Nov 19, 2007)

Hi. I use to post on the old thread (parenting with chonic illness) but one day the old post just up and died and I just found you again. So i'll reintroduce myself/update:
I'm a SAHM to DS1 (2yrs) and DS2 (almost 3 months!!). After years of of pain, living in the bathroom, being sick EVERY time after I ate ANYTHING, several misdiagnoses (chronic pancreatitis, IBS, maybe its all in your head- you know how it goes) I was finally diagnosed with Crohns Disease. I guess that was almost 2 yrs ago although I've been symptomatic for 7....
Anyways I'm doing a lot better than i was in the beginning but having a little trouble since having DS2. I was following SCD til I ran into the horrid morning sickness but this past week I've gone back on it as I feel so much better when I am (well except for that ice cream I ate but I mean its ICE CREAM! and i paid for it afterwards too so i guess i shouldn't eat it after all). I'm also having horrible back pain. I think part of it is from the epidural I had to get (had to have a c-section) plus picking up a 30 pounder and carrying a 15 pounder the majority of the day doesn't help. I always think doing some yoga might help but with so much stuff to do I just end up collapsing on the bed instead.
anyways glad to know you all are here. i had been thinking about the old thread and thinking it was too bad it died just the other day....


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## SleepyMamaBear (Jun 5, 2005)

my pain has been much worse lately. even with my upped pain meds.
wo weeks ago i had really bad abdominal pain, dr sent me for a CT to rule out appendicitis and diverticulitis. it turned out to be panniculitis, which my dr described as a heart attack of the fat.
the good fat that surrounds our organs helps to protect them, well some of mine died. and it was very painful.
while they found that on the ct, they also found a pancreatic cyst. so i had an MRI last week, and they saw the cyst again. i am working on getting a referal to a surgeon to talk about it, to see if it needs to be biopsied or removed, or just watched. but that is also causing me lots of pain.
i am having a hard timefunctioning while i am in so much pain. its hard for me to get out of bed and take care of my kids. its hard for me to be up and about, cleaning, and making meals, and playing with the kids. i feel like the worlds worst mom because they have watched about a dozen episodes of astro boy in the last few days, just because i have to sit or lay down and rest.
doing research on panniculitis i have notices a slight association with lupus and panniculitis, and also saw a lupus rash, it looks EXACTLY like what everyone has called eczema since i have had it. which is oddly enough the same time i started having severe pain. and reading about lupus (which both my mother and grandmother have!!!) i saw that its often misdiagnosed as fibromyalgia, which i have been diagnosed with. with all of the pancreas stuff i havent had time to talk to my dr about it yet, but i am starting to think i have misdiagnosed, and that i have lupus like my mom and grandma.


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## greenmama (Feb 8, 2002)

I have MS, but am still very functional with only some memory/mental acuity problems and need more sleep then usual. I also need a little help with meals and housework, but we live in community and I do get some help (mostly meals) I currently have custody of my dgd and my dd. DD has always homeschooled, but is needing to consider ps right now as I am just not organized and on top of things enough. I know I'm not being as good at providing nourishing activities for my dgd as I was with my dd, and I would like to give her back to her loving mother (my grown step daughter), but she is struggling with her own issues right now. I am also needing to re-consider some decisions about how I wish to treat the ms. I'm glad to have found you all.
Blessings,
Greenmama


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## AngelBee (Sep 8, 2004)

:


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## Violet2 (Apr 26, 2007)

Hey Tiffany--I hope you feel better! I'm sorry you're in so much pain. It sounds like you need to look into lupus as a possible diagnosis.

Hey mommas, I'm having a rough week. I had a severe allergic reaction to Cipro and feel I'm lucky to be alive. Benadryl really saved the day because even though my husband had to run out and buy it, it was still faster than EMS response.

I've had a uti for a month. The flu. A sinus infection. And a hemmorraghic (sp?) period when I'm supposedly annovulatory and don't have periods.

I also have new insurance in a system that's never seen me before so I'm trying to get established with the various specialists. Yesterday I spent 4 hours seeing doctors and having medical tests. Sadly, they are trying to tell me I don't have asthma despite a 20 year medical history. God forbid I have one 'normal' pulmonary function test!

I spent a lot of time going round in circles with a specialist where I would say frex 'The sky is blue' and they would say 'Saturn has two moons', complete and total disconnect. I finally started refusing tests, just trying to get the hell out of there.

Have you ever had that? The specialist from hell who wants to go down the rabbit hole chasing bizarre diagnoses and doing all sorts of unnecessary tests?

It's just a mess right now. I'm not on any antibiotics at the moment and don't know what the plan is and illness is the biggest trigger for my asthma. Illness + asthma send me to the ER and put me in the hospital so I'm stressed about the lack of antibiotics.

And I'm trying to be present for DD but this medical stupidity is very distracting and exhausting kwim? Plus, I've been acutely ill for a month now.

Anyway... I'm trying to find some equilibrium here.

Plus I had a question. How do you mommas handle pills and medications? I try to take them where DD can't see because I don't want her to ever try and mimic me. But inevitably she sees them b/c I have to take them on the run in between parenting.

V


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## AfricanQueen99 (Jun 7, 2008)

Hi, ladies, I'm looking for guidance.

I have thyroid cancer and will be on lifelong medication to control my hormones. My daughter (newly three) knows that I take this one pill a day that we refer to as "Mommy's medication." She's never shown any interest in touching/tasting/etc them.

Earlier this week she spiked a fever and after the non-medication attempts (cool bath, pushing fluids, etc) I gave her her first dose of ANYthing. I referred to is as "medication to help with your fever." She took it, fever went down, all is well.

Fast forward to yesterday and today - she is literally whining for "medicine"...all.the.time. To humor her I took her temp again and it was normal and matter of factly explained that she didn't need medicine.

I'm not sure where I'm going with this, but I'd love some ideas from you. I'm going to assume that many of you take some form of medication and might have some ideas for me. With the exception of my daily pills we are just not a family that takes stuff - which is why this fever reducing stuff is sooo exciting.


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## mommabear207 (Nov 19, 2007)

africanqueen99- was the stuff you gave her in any way tasty? it could be that or maybe she likes doing something just like mommie? i think you dealt with the right way. if shes still asking maybe you could also do something else with her that she sees you do , or maybe eat something healthy & yummy as prevention -but don't call it medicine.


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## AfricanQueen99 (Jun 7, 2008)

Hmm. It was infant ibuprofen, so it might have some variation of cherry flavoring, but I'm not sure (I'm too lazy to go look right now). That's a great point, though.

If she asks again I'm going to have her go hang my laundry - that should nip it in the bud!


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## coop_mom (Apr 10, 2006)

hi all!

big hugs to you Tiffany (and to everybody else who needs them!) - I have lupus (was diagnosed in Oct. 2007) so let me know if you want to chat about it (though you probably are pretty familiar with it if it runs in your family







)

re: watching TV -- this is something that disappoints me, too, but I finally came to terms with it. When I originally set up my parenting goals (ie. no or only a little TV), that was before the lupus came into the picture. TV is such a helpful crutch that it gives me a little (much needed!) break during the day, and some days more than others. But these days, I have to value taking care of my health as a top priority, so if DS has to watch a little more TV than I'd like, I'm OK with it - it's working towards the greater good!









mommabear, glad you found us









violet, I'm glad you were able to put your foot down with your docs...My most recent trip to the specialist (one of the top lupus docs in the field) didn't want to do a bunch of tests, but did want me to go on medication that I didn't want to go on (she wanted me on an immunosupressant, but I'm not ready to go there, particularly since I'm feeling better, not worse! ) - it's hard to disagree with docs sometimes, so good for you!

re: meds and kids...i take "real" medication (plaquenil and prednisone) and then I take some supplements, too. my son used to help me take my supplements (hand them to me and then I'd take the pill) but I never let him touch the real stuff. He also takes pills of his own (fish oil and gummy vitamin) so he's not really jealous of my meds. I don't take as many supplements these days, so I just take my meds myself and he takes his. And I try to be very careful keeping the meds hidden away when I'm not taking them -- the boy is 2-1/2 and will put EVERYTHING in his mouth. I do explain that the meds are only for when he's sick, but -- he's 2-1/2...

anyway, hope everyone is feeling as well as can be expected (or better!) -- does the nicer weather make you feel better? it's a mixed bag for me, I love it that spring is here, but the lupus makes me allergic to the friggin' sun







(

take care all
--kristin


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## mommymoose (May 29, 2004)

hi mamas,
I'm new here too, though i don't spend as much time here on MDC as i'd like... you'll all understand, i'm sure !!! I am 31, and mama of DS, age 4.5 and DD, age 2. I am currently on disability, but i am a pediatric physical therapist and can't wait to get back to work... AKA, NORMAL!! Why am i here... Well, in november, after about 9-10 months of not feeling right, thinking i had IBS and losing more weight than i care to discuss... I saw a GI doc, who, after hearing of my rectal bleeding, loss of appetite, abdominal pain and nausea.. confirmed my self Dx of IBS. see ya when we see ya was the gist of their goodbye. nice. in january, after the holidays had passed and still not feeling better, I called again. insisted on another appt. Still, i was told it's IBS, alternating type, and I have to live with it. take peppermint oil for my discomfort, because i was still nursing DD, and not willing to wean. plus, i had an inkling meds would mask symptoms and i was not comfortable with their dx. based solely on my complaints. we live in an age with sophisticated medical technology, and they didn't want to use any of it. Again, i got the basic "See ya when we see ya" response,... so again in february I called (thank GOD we were persistent!!) because DH recognized that i was getting worse. I mean, i couldn't drive half hour to work some days without having a bowel accident in my work pants.. talk about humiliating. ugh. I called again in Feb and basically insisted they do a colonoscopy. i remember being in the recovery room and the doc comign in to tell me, while still recovering from sedation, Jeez... that he found a bad lookng mass in my rectum. then he left after i asked all abotu surgery and colostomy bags and stuff... that was a friday afternoon. he called on tuesday to tell me i had rectal cancer.
i've since seen a lawyer, don't worry. I've found a good team of docs to help my fight, it's been a rough road so far- 6 weeks of radiation plus chemo, which i tolerated ok until the end. I am currently in the middle of my 6 week healing period, which will lead then to surgery to remove the diseased part of my colon. after that, i have another 6-12 week break, and then begin 6 months of chemo, every 2 weeks, wearing a pump to administer it for 2-3 days at a time. I HOPE to be able to work during this time. we'll see.
anyway, my "this is gonna be short" intro has turned into a novel... but the real kicker... well, aside from being told each visit that it was stress related, was that at the first visit with the GI doc, I pressed for more info, and asked "well, you say this is IBS, what else could it be??" and would you believe the response i got was:" What?? If you're worried that this is cancer, it's not, you're too young."














nice.
anyway, sorry we all have to be here together... but we'll get through it. I have a lot of help when the fatigue, pain a, ddiarrhea are too much to bear, my church cooks meals, so i have not cooked in months, but our family has had healthy meals, I've lost 40 lbs, but i'm working on gaining it back LOL! And the biggest thing that has helped me though this is my faith in my LORD Jesus Christ. he's my rock and I know we will survive this.


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## SeekingSerenity (Aug 6, 2006)

mommymoose:























You've been through a lot!!! You're a fighter, and I hope you will start seeing the effects of your persistence soon. Hang in there. Sending many healing thoughts your way!


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## mamaUK (Jul 9, 2008)

Quote:


Originally Posted by *Sasharna* 









I've had episodes of fainting and presyncope since I was 14 years old (spontaneous vision loss accompanied by collapse and sometimes chest pain), along with shortness of breath on exertion that has gotten progressively worse... especially since the birth of my firstborn. Sometimes my heart races to 160 BPM and I can't get a decent breath when I'm just standing at the sink washing dishes!

.

I had vision loss,collapse,chest pain, racing heart (sometimes up to 160 BPM, a memorable time was when I was having a C-section and all the alarms started to go off and my husband had to calm me down before they could get my baby out) Heat /or anxiety caused attacks, mostly it was becoming over heated. It was a heart condition called Wolf Parkinsons White Syndrome. I am now fully recovered after a heart procedure. Just had to reply to you b/c of the symptoms you described. I hope you find out what is wrong with you.


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## basmom (Jun 4, 2006)

Just checking in...haven't been here for a bit.

hugs to everyone...it seems like there have been some tough times over the last couple of months.

Hope you all have some good days soon.

I'm feeling pretty good. I am officially off my Methotrexate and feeling good. I still inject Enbrel weekly, but, may be weaning to every other week. We'll see.


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## Purplegal (Jul 30, 2008)

Wow, am I glad to find this thread!! Is it ok if I join in?

I am a 31 year old mama of one DD, almost 3. She was a surrogacy baby, as I was unable to carry a pregnancy. To back up...I had bone cancer in my right knee and femur when I was 15. I had 9 months of very strong chemo, a limb salvage surgery, and got back to try a normal life. Since then I've been cancer free, but the problems from my knee and that chemo have been plenty! I have high blood pressure that developed at age 17, we're assuming from the chemo, and then at age 23 I had 8 months of chest pain where EVERY dr insisted was in my head, have some Prozac. BOY can I relate to many of your postings! I was finally diagnosed with Coronary Artery Spasms, and take daily long acting nitrogylcerin and it is pretty much controlled. But the main problem is my knee, I've had a total of 8 surgeries, something is always going wrong with it and at this point I'm wondering if it would have been better to amputate. Anyway, I had to have a major reconstruction on the knee when DD was 15 months old, boy was that tough! And now something is wrong again, involving my ankle, and they cannot figure it out. I've been on crutches 6 months for this latest thing, and its SO HARD to take care of DD.
Like many of you mentioned, I feel like such a bad mother all the time, the pain makes me short tempered and unable to do stuff she loves, like play chase, dance, walk to the park, go to the childrens museum, etc. I feel like a failure that I cant keep the house clean as well. I'm constantly beating myself up about all this. It's so hard not to be depressed about it. I recently went on Lexapro just to try to help.
Someone mentioned about it being hard to only have one, boy do I understand that! There is no way I can handle two children, plus we were lucky to do this surrogacy and wont be able to again. It makes me sad that my DD will not have a sibling.

Anyway, I tried to be short, I hope this group stays around cause I could REALLY use the support!


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## tireesix (Apr 27, 2006)

I am Katie, have fibromyalgia and Ehler Danlos Hyper mobility type.

DH has sleep apnoea, nerve damage in his back, shoulder probs and he is having surgery for a bulla in his lung on Weds this week.

So we have enough on our plates lol.


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## angie7 (Apr 23, 2007)

Quote:


Originally Posted by *tireesix* 
I am Katie, have fibromyalgia and Ehler Danlos Hyper mobility type.

DH has sleep apnoea, nerve damage in his back, shoulder probs and he is having surgery for a bulla in his lung on Weds this week.

So we have enough on our plates lol.

Just wondering if you have ever been tested for Chiari Malformation or Syringomyelia? I have both of them and a suspected case of EDS as well. Research is showing that EDS runs hand in hand with Chiari and Syringomyelia and a lot of people are misdx with Fibro when it's actually these other diseases. To be tested you have to a MRI of the brain, cervical, thoracic and lumbar spine. Also these are very rare so most local doctors are not able to dx it. I would suggest if you have had MRI's to get copies of the report and see if there is any mention of it from the radiologist. Specialists are usually the ones that can properly dx it. I live in Indiana and travel to Colorado for treatment.


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## HarperRose (Feb 22, 2007)

Can I join?

I was diagnosed at 14 (1991) w/ Chronic Fatigue Syndrome and since 2004 I've had severe, chronic pain. We had a car accident and while we received chiropractic care and have even moved on to just maintenance, the pain has stayed for me. It's not every single day, but most. And some days are definitely worse than others. Earlier this week I thought I was going to cry. I guess this is probably fibro, although one doc suggested perhaps arthritis.

I also have a neurological issue that I don't have a name for. My parents had the MRI when I was 14 and then didn't continue the follow up. The only info I have for it, at this point, is cortical and central atrophy of the brain.

I need to get another MRI and see what happens.


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## zazenist (May 17, 2008)

Glad to see this tribe... I'm currently pregnant with my first (due in October 2009) and am concerned about how my chronic illnesses will affect my ability to parent. I was diagnosed with chronic fatigue syndrome 10 years ago and have spent much of that time too ill to lead what passes for a normal life. I've tried to both work and finish my graduate degree, but the unpredictability of disabling relapses has made that somewhere between tough and impossible. Dysautonomia is a BIG feature of my CFS, though there have been times when it has seemed like everything in my body was screwed up. Along the way, I was also diagnosed with IBS, interstitial cystitis, and hypogammaglobulinemia, a somewhat rare immune system disease that requires me to get my immune system in a bag for the rest of my life. And although that last one sounds the worst, it's actually been the LEAST of my problems since I've been one of the ultra-rare people who are asymptomatic - but I still have to be treated. The only problem is that I'm very sensitive to the IVIG and have twice developed aseptic meningitis as an adverse reaction.

DH and I have been together for 15 years, married for almost 10, and we've wanted children for a long time, but it has only been within the last year or so that I've been well enough for us to consider it. About two years ago, my doc decided to take a wild stab and put me on Wellbutrin SR in the hopes that it might give me some much-needed energy. Not only did it do that, but whatever it did to tweak my brain chemistry relieved a LOT of the dysautonomia symptoms, too. Within 6 months of starting the Wellbutrin, I was working part-time, hiking a little, and doing all kinds of other things I never thought I'd be able to do again. I'm still not totally well, and I still have relapse periods where I really struggle, but things have been so much better as long as I keep taking the Wellbutrin. I was so scared that with all my health issues and my age when we started TTC that I would have fertility issues, but after only two months, I was pregnant! So far, things are going well, but I have read that CFS women frequently feel better while pregnant and relapse after the birth. And like many CFS folks, I have sleep disturbance issues and if I DON'T get a good night's sleep almost every night, then my symptoms get worse... so the thought of parenting a newborn is really scary to me!

It's good to know that I'm not alone... and I salute all us moms and moms-to-be who deal with this kind of thing... it isn't easy! And being a parent aside, it's just plain tough to be in a relationship when you're chronically ill. DH is wonderful and has always been 100% supportive, but it's still taken some counseling along the way to help us deal with the issues that come up.

Health and happiness to you all!


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## HarperRose (Feb 22, 2007)

Quote:


Originally Posted by *zazenist* 
So far, things are going well, but I have read that CFS women frequently feel better while pregnant and relapse after the birth.

Wow. I had no idea. I get another condition during pregnancy called Hyperemesis Gravidarum. Basically, the best way I can describe it, is that I'm allergic to pregnancy. It's like having really nasty food poisoning or stomach virus for the entire length of pregnancy. With my last baby it was 10 mos. (He was 43 wk 1d.) I could not roll over in bed w/o feeling nauseous and like I was going to puke. Also, toward the middle of the pregnancy I developed a symphisis pubic dysfunction (something like that!) where it felt like my pelvis was being ripped apart, slowly. And my hips hurt me MUCH worse during that time period.

Quote:

And like many CFS folks, I have sleep disturbance issues and if I DON'T get a good night's sleep almost every night, then my symptoms get worse... so the thought of parenting a newborn is really scary to me!
I had such a hard time the first 2-3 weeks, but I also had 2 older kids to look after. Sleep when the baby sleeps. Always. It will be your lifeline!!

I take melatonin for my sleep trouble. It helps. My Aspie son does, too. (Asperger's Syndrome. I suspect that may be another facet of my neuro issue.)


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## time4another (Mar 28, 2005)

I was a member of the CIT...and I am needing to vent!

I am frustrated. RA dx was in summer 07 by elbow surgery synovectomy. I was (am still) in shock. At the time I was still nursing DD3, I was put on NSAIDs. I didn't take them b/c they made my stomach hurt and I don't like taking one med to combat the side effects of another so I just stopped. Did not want to wean DD for mtx. Heck, I still don't want to take MTX.

Things got slightly worse and I returned to my RA doc spring 08. MTX was suggested again, I was still nursing, but otherwise I informed my RA doc (a fellow fwiw) that I do not want to take MTX. Besides its toxic effects, it would seriously disrupt my life (I um have an active social life-yeah that's it...). So she put me on sulfasalazine. Well, it appeared to be working-but it worked too well. I ended up having a severe reaction to it-it caused bone marrow failure. RA Fellow doc was ending her fellowship as this came to pass, did not ask me to f/u on a slightly abnormal WBC count until two weeks had passed from the test. F/U on very busy (for me) Sat AM-within two hours the on call doc called me at home-wanted to put me in hospital (I had a terrible cold) or at least on 'prophalactic' abx. I declined, no fever, very very busy (DD1&2 had dance recital & rehersal). After going through three abx, an ear infection and strep throat (I do not do well with strep throat) I ended up recovering after quitting the sulfasalazine. But honestly it scared me to death.

It has ended up that I now see the head of the RA Fellowship program at the teaching hospital I go to. I really like her, she listens to me and my opinions. Is available via email if I have questions too. I have been on plaquinel since last August. It is/was not really working throughout the fall/winter. I had some improvement in January, but my suspicion is that that was from accupuncture (which has helped-I began that in January).

I had a visit last week. And although I do feel better than I did when I was first diagnosed (and before that) I am not where I need to be. My symptoms have improved b/c of the accupuncture but not b/c of the meds and not enough. I was sent for an MRI of my elbow joint b/c my doctor thinks that the synovium has re-grown-it hasn't even been two years since that first surgery. I don't want another surgery-that was the worst day of my life. She brought up adding anti-TNF biologics and a debriedment.

But dang it I just want my life back!!!!! Before all this I was a runner and in the best shape of my life. I want to be able to take my kids hiking or biking and not be spent for the rest of the week because of it. I want my house to look presentable again. I am so sick of this crap!!!! I want to be NORMAL!!!! I want to have fun with life and not dread the next visit to the doctor, or wonder when I will feel normal again....GRRRRRR I want to not have to worry about when/if the doc will call with my results and what that'll mean for me...

Heather


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## coop_mom (Apr 10, 2006)

Quote:


Originally Posted by *time4another* 
But dang it I just want my life back!!!!! Before all this I was a runner and in the best shape of my life. I want to be able to take my kids hiking or biking and not be spent for the rest of the week because of it. I want my house to look presentable again. I am so sick of this crap!!!! I want to be NORMAL!!!! I want to have fun with life and not dread the next visit to the doctor, or wonder when I will feel normal again....GRRRRRR I want to not have to worry about when/if the doc will call with my results and what that'll mean for me...

Heather

I'm totally with you on this one Heather!!

sorry stuff is going crappy with you lately...I totally sympathize with not wanting to take meds









I have lupus, and am having to face the fact that I can't go outside...I have pretty sever sun sensitivity







try coupling that with raising an almost-3-year-old boy while living at the Jersey shore









anyway, I'm with you, I want my old life back!! up until Oct. 2007, I was totally fine, and this new life is BS!

my newest heartache is the fact that I probably need to put DS in daycare because having him bored to tears while I sit around in a dark house, too sick to get off the couch, isn't really the best situation for either of us









hugs to all

--kristin


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## Krisis (May 29, 2008)

I'm lurking...you mamas are all very brave.

I feel like I have *something* wrong, but don't know what it could be. I'm on Zoloft for depression, but it's not working. I don't want to go back to the doctor because we've been playing with my dosages for over a year and I'm tired of bothering him! I do think I have mild Aspberger's syndrome, but don't really think there's a point in being officially diagnosed. In January I was diagnosed with a leaky tricuspid valve (don't know the proper term) which was caused by my pregnancy (my blood pressure skyrocketed to 220/140 when pregnant, I was induced at 33 weeks because of it.) I have chronic hypertension, which is controlled all right on meds, but my cardiologist is on my butt to lose weight because I am in the early stages of pulmonary hypertension.

It's really hard to cook healthy things when you're tired and feeling sick all the time, so weight loss isn't really going anywhere.

Anyway, I feel generally "yucky" all the time. Sometimes I have serious pain ... headaches, and bad cramps where the metal coils are from my Essure procedure earlier this year. Most of the time it's a generally sick feeling in my stomach, + dizziness. There's probably nothing wrong with me and I'm just a wuss, but I'm lurking on this thread anyway


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## SeekingSerenity (Aug 6, 2006)

((((((Krisis))))))


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## MaryJaneLouise (Jul 26, 2005)

Hi, glad to find you fellow "sickies." I was diagnosed with breast cancer in 1998, and with a Stage 4 recurrence fall of 2008 (mets to liver & bones) after falling & breaking my hip. I spent 3 months in a wheelchair & doing radiation. I'm doing well now on just anti-hormonals (Arimidex & Faslodex) and a bone strengthening treatment. I will probably need to start chemo sometime in the near future, and am not looking forward to it.

My biggest challenge is a non-supportive partner. I know it's not easy when your spouse is sick, and raising young children is always a challenge. But many days it feels like I have to be the "well" one and DH gets to be the "sick" one. Very aggravating.








all around to those of us dealing with pain & lack of energy.


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## coop_mom (Apr 10, 2006)

Quote:


Originally Posted by *Krisis* 
It's really hard to cook healthy things when you're tired and feeling sick all the time, so weight loss isn't really going anywhere.

yeah, this is a really big problem for me, too. Being on the meds I'm on, it seems that all I want to eat is white flour (pasta w/ butter etc). So much for eating healthy...

Quote:


Originally Posted by *Krisis* 
Anyway, I feel generally "yucky" all the time. Sometimes I have serious pain ... headaches, and bad cramps where the metal coils are from my Essure procedure earlier this year. Most of the time it's a generally sick feeling in my stomach, + dizziness. There's probably nothing wrong with me and I'm just a wuss, but I'm lurking on this thread anyway









From your post it sounds like there is something wrong with you, and it must be hard not to be able to put a label on everything combined together







and everyone who feels like they should be here is welcome here









hope you feel better!


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## rachelernst (Apr 27, 2005)

Quote:


Originally Posted by *AfricanQueen99* 
Hi, ladies, I'm looking for guidance.

I have thyroid cancer and will be on lifelong medication to control my hormones. My daughter (newly three) knows that I take this one pill a day that we refer to as "Mommy's medication." She's never shown any interest in touching/tasting/etc them.

Earlier this week she spiked a fever and after the non-medication attempts (cool bath, pushing fluids, etc) I gave her her first dose of ANYthing. I referred to is as "medication to help with your fever." She took it, fever went down, all is well.

Fast forward to yesterday and today - she is literally whining for "medicine"...all.the.time. To humor her I took her temp again and it was normal and matter of factly explained that she didn't need medicine.

I'm not sure where I'm going with this, but I'd love some ideas from you. I'm going to assume that many of you take some form of medication and might have some ideas for me. With the exception of my daily pills we are just not a family that takes stuff - which is why this fever reducing stuff is sooo exciting.

I find that my children often need more information like, "This medicine doesn't taste good. It doesn't taste like your children's medicine. If you want something special that tastes good, please ask me and I'll give you a spoon of honey instead." I'd much rather give them a treat than have them take any form of medication. There is so much mystical nature to everything children see because they just don't know. Telling them straight out that it doesn't taste good is something that they don't know. If you can be honest with them all the time, they will trust you and less likely to sneak it.


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## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *rachelernst.com* 
There is so much mystical nature to everything children see because they just don't know. Telling them straight out that it doesn't taste good is something that they don't know. If you can be honest with them all the time, they will trust you and less likely to sneak it.

This is excellent advice.

My kids see me taking my meds, and while my 6-year old DS doesn't really make much of it, 3.5-yo DD always wants medicine. She will say, "My hips hurt!" because she knows that I take meds for the bursitis in my hips. I explain that if her hips hurt, we will take a warm bath or she can lie down and I will rub some sweet-smelling oil on her and give her a massage to feel better, but she doesn't get medicine. (I know her hips don't hurt, but I don't discount what she says by telling her I don't believe her.)

She learned what "this doesn't taste good" meant yesterday, though. She had dental work done for a decayed tooth, and she was hurting pretty bad. They gave us some prescription medication for her, and I tried Motrin first but she was still in pain a few hours later. One squirt of her Rx med into her mouth and she buried her head in the couch, refusing to open her lips for more. Stuff _does_ taste horrifically bad, I tried a drop to see. I guess they do that so kids don't go in and chug the whole bottle? (That would be really bad!!)

It will be interesting to see if she is willing to take it after her next dental appointment. She has to go in to get *four* cavities drilled and capped with the stainless steel caps.







Because the conscious sedation for yesterday's work didn't go so well, she will be under general anesthesia.







But afterward, I imagine the lil' thing will be in some pretty bad pain.

Anyone ever consider giving their child a tippy cup a juice or milk for bedtime, send them my way and I can give them a very good example of why this is a terrible idea.







Five cavities... ***sigh***


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## barefootmama0709 (Jun 25, 2009)

Hi mamas-I guess I'll chime in. I have bipolar disorder and OCD. I also have a heart condition that is not dangerous but causes chest pain and shortness of breath. Luckily I escaped PPD with both of my children but I find that my mania is harder to manage with the ongoing lack of sleep. Like a PP I have learned that my mantra just has to be "let it ride"-if I'm having a down day, I'm having a down day. It will pass like everything else.


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## SeekingSerenity (Aug 6, 2006)

...barefootmama


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## Krisis (May 29, 2008)

SeekingSerenity, I just have to say that every time I see your little caption-thingy I giggle. Oh how I love Firefly.

Ooh, and to be on-topic, I am going in next week for my Essure followup. They said to take 400 mgs of Motrin before the appointment, and whatever they are doing will take an hour (which for me, probably means 2 hours). I am very concerned. Sounds like this is not going to be fun


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## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *Krisis* 
SeekingSerenity, I just have to say that every time I see your little caption-thingy I giggle. Oh how I love Firefly.

Ooh, and to be on-topic, I am going in next week for my Essure followup. They said to take 400 mgs of Motrin before the appointment, and whatever they are doing will take an hour (which for me, probably means 2 hours). I am very concerned. Sounds like this is not going to be fun









((((HUGS)))) Good luck, mama. I read about the Essure procedure and it just kind of gave me chills. It sounded so... invasive, I guess. I mean, yeah, it obviously works, but I just don't think it would be for me. When I get my insurance back (or should I say, _if_) then I am going to seriously look into getting a tubal, but that's because I just can't handle having any more lil' ones. Six is enough, I think, and then with facing going back to the unmedicated fibro issues... ugh.









I hope they can help you feel better.

Just remember what Jayne says: "If wishes were horses, we'd all be eatin' steak." I don't know how that applies here, but at least it should make you smile.


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## coop_mom (Apr 10, 2006)

another firefly fan here









just chiming in to say "hello"

DS started daycare yesterday -- i have mixed emotions...I really know it's better for him than sitting around watching mama do nothing on the couch all day, but I'm sad it's come to this

it's going ok...yesterday was super, today he had a meltdown when I dropped him off







but was OK throughout the day

hope folks are feeling OK!


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## Purplegal (Jul 30, 2008)

Hi ladies!

I'm so sorry so many of us are going through this...and hats off to those with more than one. I can barely handle my 3 year old.









I figured this would be a good place to discuss this...I posted awhile back, I had bone cancer in 93 and have since had 8 surgeries on my knee. I have been on crutches so many times its ridiculous, and its SO HARD to take care of my DD. Anyway, I'm heading into #9 and really am leaning toward amputating before the next surgery. Some people think I'm crazy, this leg could last a long time, they could do a 3rd knee replacement, etc..but, I am SO TIRED of the pain, of not having a life, of not being able to take care of my DD as I want to, of not being able to clean house like a normal person. The problem is, amputation and fitting a prothestic is a loooooong process, about 2 years. So I would have to wait until DD is older...
Anyway, what do you think? Am I nuts?


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## inkslinger (May 29, 2009)

Can I join? I've got endometriosis and suspected Ehlers-Danlos hypermobility type. I suspect that at least one of my daughters also has EDS.


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## coop_mom (Apr 10, 2006)

purplegal - big hugs, I can't imaging making a decision like that!! and I totally sympathize with having a 3 year old and health problems!









welcome inkslinger, though it's always a bit bittersweet having to be a member of this thread...


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## zenmama108 (Feb 23, 2009)

Hi Mamas!

I have lupus. Sometimes it can be tough raising an active toddler when you are in pain all of the time! If I'm having a bad flair, my DD will say "mama sick", and give lots of hugs









Currently pregnant with my second child, and having complications caused by lupus. My DP has been absolutly wonderful, helpful, and understanding when I am in to much pain to move.

I have sun sensitivity, so I can only really go outside when it is raining/overcast, or at night. The sun is very intense in Hawaii. On the few occasions I have felt up to it, we have gone on night swims at Ala Moana beach park!


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## SeekingSerenity (Aug 6, 2006)

zenmama... Lupus is tough. My sister was initially diagnosed with it, but eventually they determined her issue was actually RA. She's doing okay with the meds, but of course she's sick all the time.

My fibro has been flaring the past couple of days. I've completely weaned off the Cymbalta so everything has come screaming back. My rheumy told me fibro doesn't usually involve hand problems, and my hands, fingers and wrists have gone back to aching miserably all the time. He had thought that, plus the hip bursitis (which is also back







) were due to the vitamin D deficiency. My supplement really seemed to kick all that back, so now I am wondering if I'm deficient again as well as having to deal with the fibro.

Good news is I will have health insurance again on Sept first, so I can get back to my doc at that time and get the vitamin D levels checked, as well as get back on the Cymbalta. (That stuff... wow, it gave me my life back.)

In the meantime, our homeschooling starts next week and Lil'Man is teething, plus DH's new job has him working 12-hour shifts (which is okay, he just got the job after 3 months of unemployment, so this will get us caught up on bills). So I am tired. Sore. But hopeful... which is a good thing.








: strength and healing to all you mamas....


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## coop_mom (Apr 10, 2006)

hi zenmama

I've got lupus, too, with pretty severe sun sensitivity. What a pain, especially when you have kids! I have a 3 year old son, and it drives me crazy that I can't play outside with him









Glad you found this thread, hope you're feeling OK today!









--kristin


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## William's Mom (Oct 6, 2004)

Hi all









Sorry. I haven't had time to read all the way through this thread yet - but I will! I read and posted as often as I could on the last thread before we changed over to this one.

*I'm just curious how many other sickie mamas are homeschooling?*

We will be starting soon. My ds is so excited. He can't wait. He turns 5 next week. I know it will be a struggle at times, given my numerous health issues, but we really feel this is the right decision for our family. And my husband will be helping out a lot, too!

I actually feel pretty confident what we will do at home. However, I'm just not sure how energetic I'll feel to drive to homeschool co-op meetings, events, etc. So for this first year, we'll just play it by ear. When I feel up to it, we do get outside a great deal. For instance, we've hiked 15 times so far in 2009! Even with my sickness, nature is very important part of our lives. I just know what I can (and can't) do.

For the record, my sickness includes: chronic pancreatitis and sphincter of oddi dysfuntion (which involves daily severe pain and nausea), asthma, endometriosis, ovarian cysts, and a bleeding disorder. Plus significant family history of cancer, and I've had several "pre-cancer" types of things, with bilaterally abnormal mammograms and colon polyps. I lost both of my half-brothers to colon cancer, and my half-sister is a breast cancer survivor.

Hugs to all. I hope you are having a wonderful day.


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## Beth F (Apr 19, 2006)

Quote:


Originally Posted by *William's Mom* 
Hi all









Sorry. I haven't had time to read all the way through this thread yet - but I will! I read and posted as often as I could on the last thread before we changed over to this one.

*I'm just curious how many other sickie mamas are homeschooling?*

We will be starting soon. My ds is so excited. He can't wait. He turns 5 next week. I know it will be a struggle at times, given my numerous health issues, but we really feel this is the right decision for our family. And my husband will be helping out a lot, too!

I actually feel pretty confident what we will do at home. However, I'm just not sure how energetic I'll feel to drive to homeschool co-op meetings, events, etc. So for this first year, we'll just play it by ear. When I feel up to it, we do get outside a great deal. For instance, we've hiked 15 times so far in 2009! Even with my sickness, nature is very important part of our lives. I just know what I can (and can't) do.

For the record, my sickness includes: chronic pancreatitis and sphincter of oddi dysfuntion (which involves daily severe pain and nausea), asthma, endometriosis, ovarian cysts, and a bleeding disorder. Plus significant family history of cancer, and I've had several "pre-cancer" types of things, with bilaterally abnormal mammograms and colon polyps. I lost both of my half-brothers to colon cancer, and my half-sister is a breast cancer survivor.

Hugs to all. I hope you are having a wonderful day.

Just found this thread and suppose that I belong here.

We h/s our 5 and 3 yo.

As for me, I have endo, IBS (I can only tolerate about 2-3 veggies and some meats. That's it.), and "watermelon stomach". Sometimes, I wonder if these afflictions are really just one thing that hasn't been figured out yet.

DH also has chronic fatigue. Is their a tribe for both parents w/ chronic illnesses?


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## Beth F (Apr 19, 2006)

Oops! Somehow, I had double post.


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## Phoenix~Mama (Dec 24, 2007)

Seeking Serenity, That is interesting that your doc said fibro doesn't affect the hands... I have never heard that. I have been battling fibro most of my life and it has definitely affected my hands... more so recently. A friend of mine that has fibro also has had a lot of stiffness and pain in her hands as well.


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## Krisis (May 29, 2008)

Ugh, my Essure failed. I am going in next week (26th) for a bilateral tubal ligation, and while they're in there my doctor is going to see what's wrong with my tube. BLAAAAH.

Oh well. I basically get to be pampered and taken care of for a little while so I'm not too sad about the whole thing. My grandma is coming down to take care of Toby so all I have to do is rest and recover. Who knows how long it will take before I feel up to changing a diaper


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## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *JSMa* 
Seeking Serenity, That is interesting that your doc said fibro doesn't affect the hands... I have never heard that. I have been battling fibro most of my life and it has definitely affected my hands... more so recently. A friend of mine that has fibro also has had a lot of stiffness and pain in her hands as well.

I was just talking about this the other day with DH. My hands are swelling and aching and right back to the way they were when I was convinced my pain was from RA. All the fibro symptoms are back and that came back at the same time, so in my mind, it's definitely related! At the beginning of next month, we'll have insurance again, so I will be able to restart the Cymbalta, but I wonder about the doc, if I will have to see someone different (since the carrier is different).

Do any of you fibro mamas have issues with bursitis in your hips? That's something I've dealt with too, and it is also back. I was getting cortisone shots to help with that, but the Cymbalta also seemed to alleviate that.

Personally, I can't wait to get rid of this fatigue.







I... HATE... being so wiped out. I'd scream and beat my pillow in frustration but I am just too tired.


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## Phoenix~Mama (Dec 24, 2007)

I have to think the hand pain is related to fibro, especially as it popped up at the same time... mine seem directly affected when other fibro pain areas are flaring too.









I don't think I have the hip thing. Sorry!









I can totaly empathize with the fatigue though!! Every morning is such a struggle to get out of bed and get going... it's a vicious fight, and most of the day the fight continues to stay awake, some days my focus is totally non-exisitent due to the fatigue.


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## bigeyes (Apr 5, 2007)

UM, so this is bizarre.

I have finally found out why I always feel like death when I stop smoking.

Smoking lowers estrogen.

I apparently have low progesterone and high estrogen, and high estrogen has the same symptoms as hypothyroid. I am hypo, but I am also high estrogen, and the reason my migraines always went away when I smoked was that my migraines are estrogen related.

My fatigue, heavy periods, hair loss, and many other symptoms can all be blamed on the estrogen.

So, my gyno has prescribed progesterone, but only for 10 days out of the month. I see my pcp in a few days and I'm going to ask if it wouldn't make more sense to use a cream for most of the month since when I was smoking I was altering my hormones on a _daily_ basis.

This is sooooooooo screwed up.

When I smoke, I'm healthy, and when I quit my blood pressure goes up, my health goes downhill, and nothing works like it's supposed to. It's insane.

For years I've been begging doctors to tell me why this was, and when the gyno said my estrogen was too high, I got the answer by googling 'smoking and estrogen'

DUH.

I'm too old for the BCP, but when I was younger and on the pill, my headaches got better from the progesterone also. I also felt better during pregnancy because of the progesterone surge.

This blows my mind.


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## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *William's Mom* 
*I'm just curious how many other sickie mamas are homeschooling?*

We will be starting soon. My ds is so excited. He can't wait. He turns 5 next week. I know it will be a struggle at times, given my numerous health issues, but we really feel this is the right decision for our family. And my husband will be helping out a lot, too!

We are homeschooling. I have not joined a co-op yet though I am looking into it, since my kids need the social aspect. We're in a playgroup, but most of the mamas are pregnant and/or working/teaching so it's been hard to get it going. So far I have been able to get some school in each weekday, but sometimes it is pretty tough and we stick to worksheets or reading and working from that. Other days I am okay to do more intensive stuff, and I never know how it's going to be from one day to the next. We need to go back to the library and I'm thinking about working from a curriculum for at least part of it, so I know I'm getting in what they need.

DH has been amazing in helping with the kids in the evening, with regards to reaffirming what they learned through the day. He is great at helping to apply what they're learning to everyday stuff, a very unschooling approach (though I'd never tell him that).


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## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *bigeyes* 
This is sooooooooo screwed up.

When I smoke, I'm healthy, and when I quit my blood pressure goes up, my health goes downhill, and nothing works like it's supposed to. It's insane.

Oh mama, I am so sorry! I always felt better when I was smoking too. It just seemed to sharpen my focus and make me feel, I don't know, more centered. Even if I wanted to start again though, which I don't, I couldn't justify the expense!! I never thought I'd see the day when some convenience stores charge over $6 for a pack.

Plus there are so many negative impacts. It stinks... there ARE positives to it, no matter how evil the additives and chemicals make it.


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## bigeyes (Apr 5, 2007)

Quote:


Originally Posted by *SeekingSerenity* 
Oh mama, I am so sorry! I always felt better when I was smoking too. It just seemed to sharpen my focus and make me feel, I don't know, more centered. Even if I wanted to start again though, which I don't, I couldn't justify the expense!! I never thought I'd see the day when some convenience stores charge over $6 for a pack.

Plus there are so many negative impacts. It stinks... there ARE positives to it, no matter how evil the additives and chemicals make it.










Yeah. There are too many reasons not to, but at least now I have an answer. I'm hoping next week my doc can figure out a way to get my body what it needs to make things right.


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## Indigo73 (Aug 2, 2002)

Just popping in... have been on a couple of the older threads but ran across this one and thought I'd sub.

I am a childhood cancer survivor with only one eye. I have PVFS, CFS, FMS and OA in a wrist, both shoulders, hips and knees.


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## SeekingSerenity (Aug 6, 2006)

Wow, Indigo! You're really a trooper!


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## coop_mom (Apr 10, 2006)

hello all, just checking in to say hello and hope things are going well for everyone as the holidays creep up on us!

lots to do, do you have the energy to get it done?? I'm so so these days, my lupus has decided to kick my a**, so I seem to be able to get stuff done, but by 1 or 2 in the afternoon, I'm ready to nap the rest of the day zzzz

I'm currently having to decide if I should go on cytotoxic (chemo) drugs for my lupus...if you'd asked me last year when I was saying I didn't want to go on *any* drugs if I'd ever get to this place, I would have said no way...but here I am, unhappily considering this nasty stuff...more discussion with my doctor I guess, and maybe a second opinion? oy

I hope everyone is doing OK! Come by the thread and say hello









--kristin
diagnosed with lupus, oct. 2007
mom to Simon, age 3.5, married to my super DH Paul


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## Phoenix~Mama (Dec 24, 2007)

Hi Kristin! I'm so sorry you are having to decide about taking more intensive drugs.







I hope they are able to help you though.

I'm pushing through the holiday madness... it's crazy how much I still have to get done... I'm sort of fuzzy and swollen, but nothing I can't push through yet... my saving grace is my work shuts down between Christmas and New Year's, so I will have plenty of time to rest up which I will need.

So it's going... Hope everyone else is able to have a peaceful restful enough holiday!


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## Starflower (Sep 25, 2004)

Hi. I just saw this thread and while I hadn't previously thought of myself as a "sickie" I guess maybe I belong here as well. My mom used to use the term as kind of an insult to try to get me to be more energetic. I think I just need to gripe a bit. It's long and whiny, so if you don't make it to the bottom, I understand.

I just turned 39 and I seem to have an accumulative thing going on healthwise. I juggle respiratory allergies/asthma, OCD, panic disorder, depression, SPD, hypoglycemia, Hashimoto's (an auto-immune thyroid disease), and chronic iron deficiency (from very painful, super heavy periods). And now I have been feeling dizzy for the past week.

I am tired of being low-energy and sluggish. And I am seriously tired of everyone saying it's all just stress. I remember feeling peppy and energetic one specific day of my life, which is probably why I find naturally perky people annoying.

I have one child, a DD who is 6-1/2. We quit trying for another after I had pneumonia and realized that I don't think I could handle another one. DD's amazing, smart, and wonderful, but very intense and has frequent pee accidents still (which the urologist says she'll grow out of but she also has some phobic tendencies regarding public toilets). The past few weeks DD has been having severe anxiety. I feel guilty that I probably passed this on to her since it's genetically based, and I am also wondering if I am seeing some OCD signs in her or if I'm just being paranoid. It's also causing all of our sleep to be disrupted which makes it harder for me to keep the depression and OCD stuff in check.

My ND figured the current dizziness was just from low iron, but I knew it wasn't. It felt different. I'm a little bit scared about this, though my mom had benign chronic dizzy spells for years. But mine isn't going away, just lessening a bit. My ears feel plugged even though the ND could not see any fluid at my exam - she may refer me to an ENT. Part of my nervousness is about the scary "what-ifs" and the other worry is about health insurance. My deductible is high and will restart on Jan. 1st.

DH's little start-up company was on group insurance until 2 years ago when they got priced out. Now we get a stipend for premiums on private insurance (no dental or vision). However, we all had to fill out a questionnaire when we applied. I didn't think I had any big illnesses. I was just getting off Zoloft and seeing an ND so I wasn't using a bunch of prescription drugs or anything.

They use a point system to determine eligibility and they dinged me for everything - depression and anxiety were counted seperately, my wrist surgery for an accident got me about a 100 pts., I got zapped for having heavy periods, low thyroid, anemia, etc, etc. They rejected me. After I'd been previously covered on insurance for 8 years straight, they rejected me. I felt completely dehumanized. Like I somehow wasn't worth keeping alive or something - and I didn't even feel like I had a major illness!

I ended up on an insurance connected somehow to the state (subsidized, I think) and had a $500 deductible. That was OK. But it cost $400/month and I didn't even make the deductible. The following year, they raised their prices. I would've have to pay $600 per month just for my premiums alone, never mind DD and DH's. So I switched to a $2500 deductible for about half the monthly price.

That year was bad for me. My allergies and asthma got out of control. I got the flu and ended up at the ER. (This was after DD was sick on and off for 6 weeks including an ER visit for her.) We have been remodeling our house and the dust of remodeling set off my lungs in a bad way.

Now we have removed all the carpet from our home, but I am still having allergy troubles. We have two dogs and have to really keep up with the hair or I react. I'm allergic to our freakin' couch. It's very old and full of dust mites, never mind the dog hair. I am taking allergy shots for this but they take 18 months to become effective. In the meantime, I get shots twice a week. These are very expensive. So is my asthma medicine.

My insurance people suggested I could switch to private insurance because the state rewrote the questionnaire. I think I might pass and be able to get on it, but there would be a 9 month waiting period for anything pre-existing, including drugs. Great. I am also worried that if I got pneumonia, they wouldn't cover it because it would be related to the asthma. I've pretty much decided to keep my current coverage and see if DD and DH can switch to a cheaper policy instead. We're turning 40 this year and the rates go up a lot.

We're having some finance problems, partly because of the medical stuff. Sometimes I think I should go back to work, but I don't know if I could. I would have to retrain to get a decent-paying job. I can't even wait tables as a stand-by now due to the wrist injury. I am feeling very frustrated and stuck right now.

I feel like our house never gets clean enough for my allergies to clear up. If I clean, I have to wear a dust mask or I have am asthmatic reaction. (That's how I ended up at the ER last time.) I cannot visit any house that has a cat, so my social life has suffered due to my allergies/asthma for the past 3 years. (I ended up with pneumonia after cat allergies caused a bad cold to get stuck in my lungs.)

I have to wash all the bedding every week - even the comforters - or I start feeling heavy in my chest. DD pees her pants a lot and I can't get caught up on the laundry. And I seem to be the only one who will clean anything here. I've never been a good housekeeper (my OCD is more of the hand-washing/checking the locks and stove type), but now I feel like my health depends on having a dust-free house.

I have to stop beating myself up for not being able to "handle" everything on my own. I tend to compare my situation to others' and think that I must just be a wuss or something. My brother has terrible pain, bipolar and major disabilities and both my parents and brother have had major back problems and surgeries. I see how much pain they are in and how hard it is for them and I think that my problems are not that bad. What's wrong with me? I have only mild back pain (and I'm very motivated right now to keep it at that). I've never been hospitalized for mental illness. But I forget sometimes the advice I gave my dad when he was so worried about my brother's pain/problems while he was struggling with his own: Someone else's pain / experience does not diminish your own experience. Maybe I should take my own advice.

Thanks for reading.


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## SeekingSerenity (Aug 6, 2006)

Quote:


Originally Posted by *Starflower* 
Someone else's pain / experience does not diminish your own experience.









You have a lot going on, mama, and your pain is relevant. Try to be easy with yourself. Especially this time of year... it's just not easy for any of us.









I'm thinking of you...


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## Phoenix~Mama (Dec 24, 2007)

I'm so sorry you are having such a hard time with all the insurance crap and other things, Starflower.







I agree with PP, please try to be gentle with yourself... your plate is very full.


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## Starflower (Sep 25, 2004)

Thank you. I really needed a hug and some reassurance. This time of year is always hard for me. So many expectations (others and my own) that I am trying to let go.

It's good to have some company along this road. I am trying to remember to notice the good parts of things and trying not to get bogged down by obsessive thoughts.

Dr's office just called back. I can get in today to hopefully find out more answers about this dizziness.

I wish for all the mamas on this thread to find some peace amid their struggles.


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## VisionaryMom (Feb 20, 2007)

I'm still working through the thread but wanted to say hi. I have bipolar disorder and am looking into adrenal fatigue. Something else definitely is going on, but I'm not sure what. My BP is pretty sever, and despite all types of med cocktails and herbal treatments, I've never been particularly stable.


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## Starflower (Sep 25, 2004)

Hi, Brandi

I'm new on this thread but I wanted to say hi to you. My brother has severe bipolar and it's been really tough for him as well. I hope you are able to sort out whatever else is going on.









I have been to the ND a couple of times for the dizziness that started up last month and it looks like it's probably just the ear crystals thing. It seems to have gone mostly away after a couple of eplay treatments, the last one I did myself. I did have one dizzy thing happen a couple of days ago, but it only lasted a couple seconds. If it starts to get bad again, I'll go back to the doc.

I have been struggling with depression lately. Some OCD and mild panic as well. Nothing new for me, but I thought I had it under control and apparently I did not. I have been under major stress lately though. (I think my grandfather is dying and I have been in contact with my mom a lot lately.)

I have been feeling stuck inside myself a lot lately, like I'm trapped within myself. It's bizarre. Also not a new feeling, but it scares me a bit because I felt that way during college for a while right around the time that everything got crazy for me with the depression/panic/OCD stuff. I find it very difficult to be a good parent or partner when I am like this.

I think I will ask DH to assign me tasks or something so I will just have to _do_ something. Otherwise, I feel like I'm sinking into myself and just watching it happen.

I also started taking Quasense birth control pills, which are supposed to make me only have 4 periods/year. ND wants to control my anemia. I started taking them mid-cycle and now I'm spotting/feeling PMS-ish, though the first 3 days I took them I more energy than I had in a long time. I had begun feeling somewhat depressed before Christmas when I was not on the BCPs, so I don't think they are contributing to the depression stuff though I will be watchful of that as a possibility.

I hope the new year brings good things and blessings to all the mamas on here.


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## tireesix (Apr 27, 2006)

Starflower, if you have decided against more children, have you considered getting your tubes done and having the novasure procedure. It zaps your endometrium and reduces/stops blood loss. I haven't bled since I had mine done nearly a year ago. Its wonderful.

http://www.novasure.com/


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## SleepyMamaBear (Jun 5, 2005)

i have adenomyosis, which causes me INTENSE periods, last one was 2 months of constant clots, waking in puddles of blood, severe cramping.. it HURTS, and is horrible for my anemia. i was presented with two options, to have a hysterectomy, or to try the Mirena IUD. so i had the Mirena inserted. it has been a month and a half. with light spotting on and off, as to be expected, but i no longer have INTENSE cramping, hell i dont have any cramping. and my flow is super light, not heavy at all.
Mirena saved my uterus. and my anemia. if the bcp are not working for you, and are making you ill, ask about the mirena


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## SleepyMamaBear (Jun 5, 2005)

so, my own issue:
my bipolar has been SUCKY lately. lots of cycling. thanks to no insurance, so no meds.







: but my mom has said she wants to pay for meds for me. two months later.... *sigh* so maybe i can feel more stable on that front.
my fibro is KILLING me. most days i wake up crying in pain, need a vicodin before i even get out of bed. which is hard when i cant afford them and have to get some from my mom. my mobility is suffering, and being in the "pain body" really sucks for my relationships with people, cause i am cranky.
in August i had surgery to remove a cyst on my pancreas. it was thankfully non cancerous. but was considered pre-cancerous due to the type of cyst it was. so every little twinge of pain in that area has me freaked. it took a long time to heal. i had some infections at the site of my drain tube. and i had that in for almost 2 months. a few visits to the ER for pain management and infections.. no fun at all.
but again, i cant go in and see my surgeon for another followup because, NO INSURANCE.








but, life goes on, and i can choose to let this all get me down, or i can choose to rise above. today i make the choice to rise.


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## Starflower (Sep 25, 2004)

Quote:


Originally Posted by *tireesix* 
Starflower, if you have decided against more children, have you considered getting your tubes done and having the novasure procedure. It zaps your endometrium and reduces/stops blood loss. I haven't bled since I had mine done nearly a year ago. Its wonderful.

http://www.novasure.com/

I do not want more children, but I have been hesitant to do a tubal because I was afraid of ending with tubal ligation syndrome and making everything worse.

I considered the Mirena IUD but I was also worried about bad side effects from that on top of insertion and then having to get it removed. For now, I guess I'll see how the pills go since I feel like I have more control over that. If they don't work, at least I can easily stop taking them and then check into the Mirena or the tubal/ablation.

SleepyMamaBear -







Having no insurance sucks. Glad to hear the pancreatic cyst was non-cancerous though. I hope your fibro pain eases up soon and gives you a break.


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## widemouthedfrog (Mar 9, 2006)

Hello everyone. I think that I have posted here (or somewhere!) before, but I will reintroduce myself.

I'm Tricia, I have type 1 diabetes and hypothyroid. Some days I feel fine, some days it seems like I spend all day managing things.

Greetings!


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## luckysgirl (Jan 14, 2010)

I'm a long-time "sickie," basically since birth. I was back in the hospital two days after my birth, pneumonia for the first time at five WEEKS, friggin' Scarlet Fever at seven, etc.. I became very ill at eleven with recurrent viruses and was eventually the doctors' found mono in my blood work that continued to show up for three years. I was put on antibiotics - the doctor's never making the connection that the reason they didn't help is that I was ALLERGIC to them - so many times that my teeth literally rotted away, eventually requiring over $10,000 worth of (very painful) dental reconstruction surgery.

I went on, because people told me that's what I HAD to do, despite knowing in my bones that there was something seriously wrong.

I was diagnosed with Multiple Scerloris at the age of 16, because of rather . . . unusual circumstances. I was involved in a car accident that consisted entirely of my little Toyota Corrolla and an 18-wheeler who's driver hadn't slept in three days but had found time to throw back a couple pitchers of beer.

The doctor's in the emergency room found the lesions on MRI scans while looking for brain swelling from the accident. What a nice surprise, when waking up in the ICU, right?

In addition to the MS - as if that's not enough - I also have asthma, severe allergies to nearly everything, endometriosis, fibromyalgia, manic depression, anxiety disorder, and high blood pressure.

Whew! If anyone made it through that, I commend you. Excuse me, while I go cry into my pillow.









But before I do, I just want to extend my sympathy and good vibes to other mamas who live in similar situations. It's hard being a parent in the first place, let alone with a chronic illness. I think you're all amazing.


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## tireesix (Apr 27, 2006)

Quote:


Originally Posted by *Starflower* 
I do not want more children, but I have been hesitant to do a tubal because I was afraid of ending with tubal ligation syndrome and making everything worse.

I considered the Mirena IUD but I was also worried about bad side effects from that on top of insertion and then having to get it removed. For now, I guess I'll see how the pills go since I feel like I have more control over that. If they don't work, at least I can easily stop taking them and then check into the Mirena or the tubal/ablation.

SleepyMamaBear -







Having no insurance sucks. Glad to hear the pancreatic cyst was non-cancerous though. I hope your fibro pain eases up soon and gives you a break.

You could have the novasure done without having the tubal.

Obviously, its best to do what you want to do but having the info is handy just in case things aren't working out.

So, hopefully, you will find something that works and I will keep my fingers crossed for you!


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## Starflower (Sep 25, 2004)

widemouthfrog and luckysgirl

Quote:


Originally Posted by *tireesix* 
You could have the novasure done without having the tubal.

Obviously, its best to do what you want to do but having the info is handy just in case things aren't working out.

So, hopefully, you will find something that works and I will keep my fingers crossed for you!

tireesix - this past Saturday I was about ready to ask for a hysterectomy.

I started the new pills. Had some spotting instead of a period. good. Then week 5 hit and wham! bleeding like crazy. I actually paged the doctor on Sunday. Got in today. She's trying to work with me herbally for now (ND) on getting the bleeding under control. Then she sent me to the lab for iron tests because I'm so tired. The phlebotomist stuck me 4 times in 3 different places, including one of my hands trying to get the blood for the test. She finally gave up and sent me on to another lab because the ND wanted the results stat. The other lab was able to get the blood, but by that time my arm had been poked 3 times in the same place and was pretty sore. Yeesh! And I'd just gotten over the reaction to last week's allergy shot from hell.

Grumble. I am in a bit of a weird space over here, too. I've decided to cut down on my volunteering at our church. I want to for my sanity and so I can focus on what makes me feel alive. But now I feel like it's necessary. I don't have much energy and DD is having a lot of anxiety now so we're dealing with that on top of my weird health equation. But I am on the board at church. I am supposed to be on for 2 more years after this. So I am trying to figure out how to tell the president that I am quitting. (I'm secretary so it won't go unnoticed by the congregation either.)

I want to say health reasons, but I'm one of those "don't look sick" people. Some days I am OK and cope well with life, the other half of the time, everything is a struggle. I don't really want to tell the entire congregation that I have OCD, depression and panic disorder. I don't want it used against me (even though it shouldn't matter). I also don't want to have everyone think I am just a cop-out. I will probably have to write a blurb about my decision for our newsletter.

But after this week, I realized that I really DO need to drop this from my life. It causes way more stress than I need. I get all OCD about everything so my work takes much longer than it should. I guess I feel kind of guilty about wanting to leave because it's kind of a sensitive time right now, but I barely feel like I have enough energy to deal with just my family life.

I am just going to tell people I have some chronic health issues and I no longer feel like I can do the job to the best of my ability. That would be true and not getting into any details I don't wish to share.

Any other suggestions?


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## Starflower (Sep 25, 2004)

I gave my notice to the board. I am dropping various activities and have been rather sad lately. I think I am grieving my losses, even the ones I kind of wanted out of anyway. I guess just being forced to make the choice has been hard, plus there were things I'd been looking forward to doing that I had to drop as well. Bleah.

Still bleeding. Off the BCPs and now on provera just to try to stop the bleeding, but took the last of it tonight and I'm still a mess. Will call the ND Monday if bleeding is not gone. I have an appt. for a vaginal ultrasound on Wednesday.

Hope to know more soon. Trying to stay positive.


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## SeekingSerenity (Aug 6, 2006)

Starflower....


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## rubidoux (Aug 22, 2003)

I just read the whole thread, which I should not have started after midnight. lol So, just want to give you all big hugs and introduce myself.

I have type I diabetes and I'm feeling a little low about it bc my six year old cried the other night when my blood sugar got low enough that I became incoherent and unable to really understand what was going on. I think it was the first time that he was really feeling scared about my health.







I'm also scared -- and I have no idea if this is a logical or realistic fear -- that my lows are going to effect my mind in a permanent way or that I will become increasingly out of touch with reality while they're happening. It seemed like there was very little to no losing touch with reality during lows 10 years ago and now there is, so I'm worried it will continue to get worse. That's the first time I've said that out loud! Sigh...


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## Starflower (Sep 25, 2004)

Thanks, SeekingSerenity. Hugs are good. I've been very emotional lately. Coming to terms with having to set limits I didn't want. Guess it's part of the territory.

rubidoux -







That must have been scary for you and your kiddo. I hope things get evened out for you soon and your diabetes doesn't get any worse. You sound understandably worried and stressed. Hang in there.

I have a 6 year old too. I think she's starting to get worried about me lately because I've been so cranky and tired and not myself. She has anxiety and just started therapy. I am trying not to add to her worry her and anxiety, but it's hard to deal with her issues while having my own.

Update: Bleeding much less now. Finally! And I'm getting a pelvic ultrasound tomorrow. Hopefully, I'll get some answers to at least part of this puzzle soon. Thanks for all the info and suggestions, everyone.


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## widemouthedfrog (Mar 9, 2006)

Hi rubidoux, I have type 1 as well.

I think that as you get less physically aware of lows, your mental symptoms tend to become more prominent - at least that is how it is with me. Lucikly (?), I tend to go into shock, stop being able to move, lose control of bodily functions before my brain stops working. Yay me.

Have you heard of Blood Glucose Awareness Training? If you're in the US I would look into it - training your mind to recognize the cognitive symptoms of lows.

I'm now dealing with minor panic attacks induced by low bgs combined by stress, so that's my fun thing.


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## Starflower (Sep 25, 2004)

widemouthfrog - I'm sorry to hear you're dealing with panic attacks. They suck! BTDT. I hope you find something to help you deal with the stress and anxiety.









I feel like I'm on the merry-go-round of going to docs lately. Today was the allergist. At least things seem to progressing normally with the immunotherapy.

Last week I did had a pelvic ultrasound. Results came back as fibroid. Not surprising given my symptoms, though if it's only one almond-sized one, it must be in a prime location to cause so much trouble. My ND is referring me to an OBGYN clinic to see what my options are since she said naturopathic methods don't have the best results with symptomatic fibroids. So this could be fun. But also, it could take care of a lot of stress and discomfort and the anemia.

My kiddo is still having anxiety and no longer wants to go to school. She went today but I don't know how much longer she will go. It's a private SVS styled school and she just needs more support than they can offer. Not a good fit for her. Looks like we'll be going back to homeschooling for next year, possibly even before summer if things continue they way they are going. (We unschool so we don't have "official" start times or make any differentiations as to school vs. not school time.)

So now I am trying to figure out how to homeschool and how to parent while barely functioning myself. Hopefully, over the next few months some of these issues can be resolved, but for now, I haven't exactly been the parent I want to be. DH is being very supportive. Sometimes I wish we had family out here, but they're usually a PITA anyway, so it's probably just as well.

I hope everyone is doing better.







s for anyone who needs one.


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## Starflower (Sep 25, 2004)

I didn't want to post on a new thread, but I had to say something somewhere.

I'm a little scared about going to the doctor tomorrow. I'm seeing a new gynocologist to find out what my options are for dealing with a fibroid that seems to be causing me troubles. I have some difficulty believing one small fibroid could cause all my menstrual problems so I guess I'll discuss that with him too.


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## Beth F (Apr 19, 2006)

Quote:


Originally Posted by *Starflower* 
I didn't want to post on a new thread, but I had to say something somewhere.

I'm a little scared about going to the doctor tomorrow. I'm seeing a new gynocologist to find out what my options are for dealing with a fibroid that seems to be causing me troubles. I have some difficulty believing one small fibroid could cause all my menstrual problems so I guess I'll discuss that with him too.

Hope that all went well with your visit. I've had fibroids (removed surgically) in the past. At the time, I didn't know about estrogen dominance but lately I've been reading about it and wondering if that's what's causing some of my menstrual difficulties and what may have caused my fibroids.


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## rachelernst (Apr 27, 2005)

If you want to read a primer on estrogen dominance read Hormones Health and Happiness. I'm going to see a doc using bioidentical hormones for my allergies and bc my cycle has gotten erratic. I have a non-natural living friend who has a cyst (on ovaries?) and her gyncoc Rx'd The Pill for a short time to shrink it. I wonder if the same effect should be able to happen with bioidentical rather than artificial hormones.


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## Starflower (Sep 25, 2004)

Well, the gyno said that the fibroid was too small and is in the muscle part of the uterus so it should not be causing the problems. I would've thought my ND would've figured that out when she got the results. If she'd told me the type of fibroid it was, I would've known that too. I don't know if I should ask her more questions about hormonal imbalances or just go to a new one around here that specialized in it.

The gyno recommends either using a Mirena IUD (same thing my ND suggested a few months ago, but I have some reservations about it) or considering an ablation.

I am not making any decisions at this point. I am frustrated with my ND at this point. I am very picky about doctors and not thrilled with her lately but I am tired of shopping for new docs/NDs.

I am also losing patience with this issue and I don't want to have a solution which involves a bunch more expensive horse-pill-sized supplements. I'm not sure at this point if I should try to find a different ND, try the Mirena and hope it helps, or just do the ablation and be over with all of it. Sigh.

So more research to do, I guess. Maybe I'll post something in health and healing to see if there are others with this type of problem. Thanks for the replies.


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## heidirk (Oct 19, 2007)

de-lurking momentarily-

I am really hurting today.







This stinks.


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## Starflower (Sep 25, 2004)

heidirk







I'm sorry you are hurting today.


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## clairelamar (Feb 16, 2007)

hi everyone,

i admit i haven't read all 9 pages of this thread! i am a 28 year old mama of a 9 month old who has chronic pain. i coedit a zine called "when language runs dry", a zine for people with chronic pain and their allies. i am doing research for an article about parenting with chronic pain. if anyone can recommend any fave books, blogs, articles etc on this topic i would love to hear them!

thanks


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## earthmama369 (Jul 29, 2005)

Still reading through the thread, but thought I'd post an official "hello." The rheumatologist confirmed what the neurologist told me a couple weeks ago. They're pretty sure I have fibromyalgia. I have the classic profile: TMJ, IBS, heinous menstrual cycles, 16 trigger points, unusual muscle pain, trouble sleeping (and the resultant fatigue), headaches.... The rheumatologist is concerned that I may have some kind of metabolic myalgia, as well, so we're doing a 6-week trial of Neurontin to see how I respond, and if I have muscle pain after I get the sleep component worked out, I'll go in for a muscle biopsy. After the endoscopy, colonscopy, 47 vials of blood, MRI, and nerve conduction testing I had done all last month, what's another test, right?









I generally steer clear of meds. Any experiences with Neurontin? I'm feeling a little nervous about this one. It seems like it has a lot of possible side effects, and some of them are pretty scary.


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## Starflower (Sep 25, 2004)

Hi, earthmama369 - I just wanted to post to say hi, give you a







and to bump this thread. I hope you find some hopeful answers. I don't have any useful information for you.


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## heidirk (Oct 19, 2007)

and a few other things...









Starflower- thank you for your hugs.









earthmama- did you try the Neurontin? How did things go?

AAM- I started taking a massive daily dose of Vitamin D- and trying to get some sun. I have to be careful with that because my Psoriasis is agravated by sunburn. I am doing better!







I have had far less pain lately. I have also started barefooting hardcore- and my foot realigned itself!







Shortly after that my knee realigned itself!

I talked it over with my Chiropractor- and he said my tendons pop out of the grooves they are supposed to lie in, and then rub over the bone







That's what hurts(duh) and why that joint swells and is unstable- until it heals enough to pop back into place. Thank you EDS!


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## tireesix (Apr 27, 2006)

Neurontin, thats gabapentin right?

I can't reccomend it because I react to it, I have one of those other crappy fibro symptoms, the 'react to all meds' symptom. I can tolerate some pain killers but gabapentin, pregabalin and anti depressants all make me suicidal, can't even tolerate caffeine now, I am stuck with oxycodone, tramadol (which is one of the preferred pain killers for fibro) and sleeping tablets. Oh, and I am trialling lignocaine infusions every 10 weeks but I am still at a really low dose so not feeling any effects yet (besides, thanks to the EDS I don't respond well to local anaesthetics anyway







).

From what I have read and trialled and been told, Pregabalin is preferred over gabapentin, duloxetine to go with the pregabalin as well. Mirapexin is supposed to be good BUT I gained 2 stone on it and wasn't on it for long (under a month).


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## tireesix (Apr 27, 2006)

OK, so all my messages recently are grim and really I am not a grim person.

Gabapentin - my DH used it, found it to be really useful (he has impinged nerves in both shoulders plus nerve damage in his back, while he was using it he was in less pain and seemed to function better).

For me, already told you about that but for other people with fibro, those who tolerate it (I know a lot of fibro folk have issues with tolerating meds) do say that it works well (all they most of them are not being moved onto the pregabalin which I believe is more effective in that it takes less to do the same job?????).

There is something else I am trying to get my hands on (though lord knows why because I have reacted to so many things that its a wonder I don't just give up lol) called tizanidine, true muscle relaxant that also helps with stage 4 sleep. My pain management doc says that that would be scraping the bottom of the barrel but agrees that I am pretty close to the bottom of the barrel anyway (also, because of my EDS 3, they aren't sure about making my muscles more relaxed than they already are, I already suffer dislocations).

Accupan (nefopam hydrochloride), supposed to be good in the long term, I can't tolerate it, it affects the dopamine, seretonin etc and if taken regularly over the long term is supposed to help with sleep, nausea, IBS and pain associated with fibro. I just found it knocked me out.

Mirapexin, dopamine agonist I think, usually used for RLS and parkinsons, some people find this REALLY good but its hard to get your hands on for fibro. Again, I couldn't tolerate it, well I could, but there was the weight gain and with the EDS and PCOS, I simply cannot afford to gain weight, especially as my knees started dislocating this year.

Thinking...............

Can't think of much else. Tramadol I find REALLY helpful and whats more, I tolerate it! MST (morphine tablets) I didn't find very useful but Oxycodone I find better and then I use oramorph for extreme pain (ie dislocations etc). I use paracetamol and ibuprofen on top of that (for headaches and also because of the WHO pain relief ladder thingy.

Buprenorphine patches I found where fantastic BUT (and a few people ie my husband and a couple of friends) have found that after about 18 months, they started reacting to the patches (it was pretty gruesome really, after a couple of days my skin would be so blistered the patch would fall of with all this skin and fluid, ew). I am gutted because was the best thing I ever found for my fibro pain.............

I also use sleeping tablets as necessary, Zolpidem was ok for light relief but I find that Zopiclone works better, and whats more, sometimes the only thing that will touch my back pain is a sleeping tablet, I figure it must be because it relaxes me????? I don't know, it works though.

Once the Lignocaine infusions have an effect (fingers crossed) I will let you know about that. With the infusions, you are stuck as a day patient/in patient (depending on the amount and how they do it), you have to be monitored throughout. The lignocaine is fed directly into the blood stream by a pump. My first one took about half an hour but they had to do a heart trace, blood pressure etc before hand and then I had to wait afterwoulds for half an hour before they let me home. Apparently, the next one will be longer and for the moment, they said it will be every 10 weeks but it all depends on how well it works, if it works and whether I suffer any side effects as the dose increases...........

HTHs


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## Starflower (Sep 25, 2004)

Update: I got my Mirena IUD put in this morning. I'm hoping it will alleviate the super heavy periods and the resulting chronic anemia. I'm hoping to get some results before the insurance deductible resets in January. (It takes 3-6 months to start working for blood loss - bonus is birth control after two weeks placement.) If this doesn't work, I'm looking at ablation & tubal or a hysterectomy. I would've done the ablation already but the doctor thought due to my age I may need more than one (apparently they don't last forever if you are not close to menopause) and she thought the IUD would be better for pain. I decided not to investigate for endo at this time but if I end up with a surgical procedure later on, we will do that then.

In any case, I finally feel like I found a GYN that I can trust. She gives me all the time in the world to decide and I can ask a million questions. She doesn't belittle my anxieties. She is very straight forward. I am so relieved to have found her.

I had a couple days last week with really bad depression but it was only a couple days. My DD (7 years) is going through a lot of anxiety and depression right now. We are seeing a therapist for her and I have also started seeing her on my own. I've been very stressed out so the OCD is bugging me a little bit but still seems to be mostly under control. I am noticing it but so far not starting to do rituals.

My wrist is better but not great. Gets swollen and painful at times. I now have a large doctor bill to pay but no answers other than we could try a cortisone shot. I declined and have been icing instead when it bugs me. Mostly it's OK. MRI showed nothing new other than the bones are close together. Can't do anything about that. I am trying to be good and not do any heavy duty stuff with my left wrist. That seems to be the key for that.

ND says my thyroids are OK right now. yay!


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## marinak1977 (Feb 24, 2009)

Hi Everyone, I'd like to join in. I am doing fairly well currently, although I have hypothyroidism, IBS (undiagnosed officially), and probably mild adrenal fatique (as diagnosed by my nutritionist). I am on synthroid for the hypothyroidism my IBS is unmedicated, but it does not flare up when I can manage my stress levels, however, I still end up with very painful cramps at least a few times a month. With my new job and a baby I've had digestive issues almost every other day for the last couple of month.







I'm finally beginning to get it under control. My hypothyroidism is weird such that when I have a flare up I end up with dull pain in my joints - especially my wrists and feet, although it sometimes goes up to knees and elbows as well. This is an unusual symptom and I was tested for RA because of it (I'm negative for RF, although my ANAs are borderline) but it really seems to be related to when my T4 levels drop.








My current goal is to straighten up my nutrition again (I try to eat little processed food, refined flour/sugar, and take out) which went out the window after DS was born, and to work on helping my adrenal glands. Anyway, I'm looking forward to getting to know all the strong mamas here, and maybe learn something.


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## MaryJaneLouise (Jul 26, 2005)

Hi, everyone, long time no see. I've been having a bummer of a summer. I'm on the chemo-for-life program, due to metastatic cancer. My DH is very unsupportive and untrusting of me, and really undermines any attempt of mine to spend as much time with my kids as possible, quality or not. He has even insisted that they go to a summer day camp / child care every day this summer while they are out of school. I know it's probably a good idea on some days when I am very low energy, but other days I feel good and he still insists that I take them in, no matter what. It's just so frustrating.


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## mandalamama (Sep 1, 2004)

born with GERD, severe allergies and asthma. i've been disabled since '95 with chronic fatigue syndrome, fibromyalgia and early-onset degenerative osteoarthritis plus hypothyroid and allergic asthma. i've had PCOS, IBS sciatica and IC all that time, as well. i was diagnosed with lupus 2 years ago, so far it's a low positive and no medication yet. i've had to use a rollator (rolling walker with a seat) since i was pregnant with my 6-yr-old, i had SPD during that pregnancy and the hip and back pain and weakness just never went away. now the diagnosis is "degenerative disk disease" with herniated disks and 3 bone spurs at L4-L5. for the past few years i've had to use the electric carts in big stores more and more, we make a joke of it and my daughter loves beeping the "horn." right now i'm in the middle of a natural miscarriage (12 weeks), i'm so dang T-I-R-E-D and of course summer is just starting. i have had anemia since last year.

this might sound weird, but i never feel "sick" unless i have a cold or flu or something like that. i think it's because i've always been sick/sickly since birth, so it's all just my "normal" and i don't get upset about it anymore. i started doing yoga when i was 17 and it has really, really worked for me so well. i also started meditating and doing deep abdominal breathing at the same time, that and the yoga has come in SO handy for chronic pain control, for avoiding the effects of stress as much as possible. naps are also a wonderful thing  if i'm stuck in bed i have a ton of fun stuff for my daughter to do, we play cards, board games, word games, we read, color, draw, have picnics in bed, have puppet shows, play with dolls, all that fun stuff. it's to the point now if i'm having a great day she's like, "mama, don't you need a nap yet?!" *grins*

the thing that's worked for me best is warm (93 degrees) pool physical therapy, i was lucky to have it available where i used to live and it was incredible for keeping me more mobile and in less pain. oh, i miss floating in that warm water! it felt so good to walk in, too. the hospital here has a tiny warm pool, no room to walk, and the entrance to the PT center is, ridiculously, so far from the parking lot that by the time i'm done with PT and get to the car, i've undone all the work and have added even more pain and weakness. duh!!

i've been blessed to learn so much "adaptive parenting" from disabled parenting groups and here at MDC. a lot of it is pure intuition, though. a Marine once told me to "improvise, adapt, overcome!" i love that motto! i've kept a supportive circle of people who help me parent (i'm single and alone) and also take advantage of all the local resources for my girl. one thing i notice about her is that she's not deprived but she is much more compassionate than her peers. nice to meet y'all, sorry for the reasons we are meeting.


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## Starflower (Sep 25, 2004)

Hi and hugs to the mamas who've posted since my last post. I see that this thread isn't very active.

I was finally feeling pretty good. Allergy shots were starting to work (finally - after 18 months). The IUD has made my anemia go away but it's almost been a year now and I still drain something more often than having days with no protection. I can plan to do activities without going around my period, but it just seems like a long, slow-flowing version that never really ends. I hope to follow up with the OB-GYN in a month or so.

BUT - after having some odd olfactory sensations of smelling phantom smells (usually cigarette smoke that wasn't actually there) and then having a week long headache on the left side of my head which wouldn't go away no matter what I took, I ended up at my ND's office and then in a CT machine. They found a lesion on the left sphenoid bone between my eye and my brain. They ordered an MRI for clarification but that just determined I needed a biopsy. Eventually I ended up with surgical biopsy with a brain surgeon. April 22nd, they took out most of the lesion, with primary reports showing benign activity. They left part of it believing they could zap it with radiation once it was truly identified. Except that they could not positively identify it. They even sent everything to the Mayo Clinic and they were not able to ID it either. It came back "negative" for every test. Recovering from brain surgery is not an easy thing. My mom came out to help us and stayed 3 weeks. At about 4-5 weeks post-op, I went into a depression and so did my DD. It was horrible at times. We elected to put off going back in for another surgery to get the rest of the lesion for testing purposes.

I was in limbo for several weeks during all this time, expecting answers and never having them come. I finally got used to it, until it was time to schedule my follow up scans. Making my appt for the new scans spiked my anxiety. Plus my headaches had come back and my vision started to be affected. My DH preferred to think that things would be fine on my next scan, but I knew they would not be OK. The scans showed that the lesion had grown back into most of the area where they'd removed it (though this time it was not pushing on my brain). It had also grown larger near my eye orbit, pushing my eye muscles around to the point that it was making it painful to focus at times and I was beginning to have auras similar to migraine auras, especially in response to light changes. This showed that whatever it was - we still don't know at this point -- was aggressive. I underwent a second craniotomy to completely remove the lesion July 21st. My mom came out again for two weeks. Yesterday was my first day on my own and I was so dizzy I asked a friend to come by and hang out with me and DD in case something bad happened while I awaited a call back from the nurse. The dizziness was probably a reaction to inflammation near my brain which can affect several things (including nausea which I've also been having). I do not feel dizzy today.

I am still on pain meds and trying to navigate the meds I need to stay semi-functional (emphasis on semi) and the side effects of the medications. After my first surgery I had terrible short term memory loss (kind of like new baby brain when you don't sleep for months) but this second time around it's been much better. I think it's because they did not put me on steroids in the hospital this time since the brain was less involved than the eye. (In both surgeries they did NOT have to open the cover to my brain, the dura.) I felt worse in the hospital this time, but my incision healed much better. (The first time, I threw up from the anesthesia and my incision bled resulting in more staples and delayed healing.) This time, I ended up with a UTI, but it went away easily enough with anti-biotics and lots of cranberry juice.

Now I have an appointment with my neurosurgeon for a follow-up on Thursday. She is pregnant and due any minute so I am just hoping she doesn't got into labor until after my appointment.  She told me while I was still in the hospital that the lesion was easily removed, even from the bone, that it was not attaching to any other tissues other than the bone, but they could only excise the bone area. Normally they take a 1 cm perimeter out to be sure of it being gone, but that 1 cm would've included part of my brain and my optic nerve so they left those alone. She said it looked non-malignant (thank you!) and they found some cells which looked different than last time, which may mean that the pathologists will be able to identify it. They still don't know if it's a tumor of some sort (probably/hopefully benign) or if it's an inflammatory/immuno process. I just hope they get some definitive answers this time which indicate it can be treated. I'm also hoping it doesn't include chemo which is one therapy on the table depending upon what it is.

Whatever it is, this condition is extremely unusual, given that it looks isolated (I've been scanned everywhere for cancer and also bone-scanned full body.) The location and everything about so far has been extremely odd and baffling for all the medical people. It's like one of those things that you read about some bizarre and obscure thing happening to someone far away that you've never met, only to find out that it's actually you. It's just surreal that way.

I've seen a couple different docs, including an ophthamologist plastic surgeon for possible reconstruction, but he determined reconstruction would not be necessary due to size and location of excision. Plus he said he was not qualified to reconstruct behind the eye, only in the facial area. He did test my eyes though said the eye is healthy. I am an artist so I am happy about this. I had been studying what it might mean to lose an eye to this thing.

For a while I was calling the thing (lesion/tumor/whatever it is) "Beyotch" after a friend suggested it. I often try to use humor to deal with this mess I'm in. After the first surgery, I read all the Harry Potter books so I had something else to talk about with my DD (8) to keep our minds of everything going on. This go around, I re-dubbed the thing-which-would-not-be-named "Voldemort" because it was reported to be gray, I am sure it is ugly, it's causing me great strife and is threatening my life - plus in the end of the book series Voldemort is finally killed even though he'd returned previously. The last HP movie came out the weekend before my second surgery, so DH and I went to see it the Tuesday before my surgery. I wanted to see it before surgery because I'd recently finished book 7 and we had watched the other films. I also wanted to see it in case my vision suffered more after the surgery.

While I did have double vision after the second surgery - worse than the first - it quickly became monocular vision when my left eye swelled completely shut and turned many beautiful sunset colors. After a few days, the swelling went down enough that my eye opend again. And I can now see better and focus better than before the surgery. I am keeping a blog so I don't have to keep repeating the info to everyone in my circles. And I often get comments of "death to Voldemort" in my guest book. Even the post-op hospital doctor didn't know what to call the whatever-was-removed, so I told him just to call it Voldemort. So maybe as long as I am not a Horcrux, I will be OK.

I hope so. My DD has been very scared and sad and having tons of anxiety. But this time, she is dealing with things in real time rather than stuffing everything and wigging out a month out. She has told me she is scared that I won't be around anymore. This is sad and scary to hear, but I am glad she is dealing with her feeling openly, especially after having a terrible existential depression last summer focused around death.

So it's been interesting (and so much more) dealing with all of this while still managing OCD/depression/panic disorder. My allergy shots are on hold and I will likely have to restart them because it's been so long since my last dose. If this is the case, I will ask them to add in horses to my mix. And I am frustrated that the IUD isn't providing quite what I wanted because according to my ND the only options left we haven't tried are both surgical. And frankly, I am tired of having surgery.

If you've read all of this, thank you for your patience. I hope the other mamas here are getting some relief from their pains and getting better health as much as possible while we all struggle with our ailments while parenting the little people we love so much.


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## Ravensong13 (Sep 28, 2009)

Hi!







Another Fibro mom here. I was dx when I was 11, but I've been going through the 'is this really what I have' game the past few months. I was in the middle of being tested for Elhers Danlos syndrome when I got pregnant and just decided for the time being I don't really care, lol. 15 years of trying to figure out what is wrong with me is making me tired. I also have raynauds and some mystery intense itching in my legs that has been going on for four years. It's kind of like having my legs set on fire a couple of times a day. The doctors can't seem to figure that one out. All things considered I do pretty well though. I have just resigned myself to the fact that I will always feel tired or achy to some extent and I've stopped trying to let it dictate my life for me.


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