sickie mamas tribe (parenting with a chronic illness)

[coop_mom]

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

[angie7]

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

[Llyra]

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.

[coop_mom]

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

[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! :

[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 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...

[Violet2]

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

[Heavenly]

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!

[angie7]

everyone

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.

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.

[goodmomma76]

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...

[heidirk]

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.

[Sharon, RN]

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.

[holothuroidea]

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).

[goodmomma76]

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.

[basmom]

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...

[coop_mom]

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!

[basmom]

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...

[bigeyes]

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.

[SeekingSerenity]

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!!

[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!