Pregnancy and Chronic Conditions

[cameragirl]

Have any of you dealt with pregnancy and a chronic illness? (Or are pregnant or trying)  I have a muscle condition that causes spasms of the voluntary muscles.  I checked with my doctors before trying again, and finally got pregnant after a year.  I'm having to go off of medication that made the spasms bearable, and it's tough.  I'm about five weeks and trying to accept that I most likely will be stuck with a high risk specialist and repeat c-section.  It is medically necessary, but not really my ideal.  If you've been there, are there, or are thinking about it, I'd love to hear from you. 

[birdhappy85]

I am 14 weeks pregnant with my first child and have several chronic conditions, so I can relate. I'm sorry to hear that you have to deal with this too! I'm only 25 years old, and it's hard for me to accept my situation when I hear most pregnant women dealing with just nausea or fatigue and things like that... or other women who are having blissfully enjoyable pregnancies. I try not to compare myself to others but sometimes it's just impossible not to feel a little jealous or resentful. I've had four different infections already in just the 1st trimester of my pregnancy and I feel like I'm perpetually sick. I don't know if pregnancy lowers your immune system but it sure feels that way! My anxiety and panic attacks are off the charts. I have a restricted diet because of food allergies, which is really hard to deal with when I'm having food aversions and food cravings off and on. And that's just some of it... I've always wanted to be a mother and I knew that starting my family now is better than even a few years from now when my body can handle even less. I've been struggling most with the fact that I don't know anyone who has ever experienced anything remotely as difficult as I am and while pregnant on top of it. It has made me feel very isolated and defective. Do you ever feel like that? I'm doing the best I can to take care of myself and keep working (although that has become more of a struggle), but since pregnancy has heightened my symptoms, I keep getting stuck in thoughts like, "What if things stay worse after the baby is born? How will I take care of my child?" My husband reassures me that things will get better and he'll be here to help anyway. I know my anxiety is doing most of my talking these days.

It's just such a tough situation! I'd give anything to have a pregnancy meet-up group near me with other women managing chronic conditions and supporting each other. Do you have a lot of supportive people around you? I wish the best for you and that you have a happy, health pregnancy leading to a happy, healthy baby!

[cameragirl]

Thank you for your post. It can be so overwhelming and isolating.  I do feel sometimes like I'm broken.  I have a diagnosis that is literally one in a million, and it normally pops up in women around the mid 30's-40's.  I was  diagnosed after years of searching for answers at the age of 28.  I wish that there were women I could talk to about the condition and pregnancy, but there aren't many.  Luckily I do have help and friends and family that care.  Because of the crummy economy, we share a house with my mom.  It isn't ideal, but she really does help a lot when I need to take a nap or keep our 4 year old busy. 

[dot1]

I have a friend with MS who recently had a baby.  Spasms were a huge issue for her pre-pregnancy and she had to go off meds...but for some reason her MS went into remission during pregnancy and they weren't nearly as bad as she thought they'd be.  Could have been the hormone relaxin, or the extra progesterone?  I hope for you the same thing happens.

[Smokering]

dot1:  I have an acquaintance who has five kids, spaced closely together; for the primary reason that her MS feels a LOT better during pregnancies. Interesting to hear it isn't just her!

[cameragirl]

I'm waiting for the relaxin to really kick in.  It spikes in the first trimester, but I'm assuming it'll be higher towards the end of the trimester.  I think that the remissions from autoimmune conditions might have to do with the shift in immune function while pregnant.  Last time I did have a muscle tear across my ribs around week 29.  Don't want to do that again. 

Interestingly enough, either CNN or MSNBC had an article up today about disabled women being pregnant.  Apparently it is a huge grey area because there is very little research out there.  Since more women are able to have babies after a diagnosis now, they need to get on it!  The best they could give me last time was "we know about 30% of women get worse, 30% stay the same, and 30% get better while pregnant." 

[birdhappy85]

"The best they could give me last time was 'we know about 30% of women get worse, 30% stay the same, and 30% get better while pregnant.'"

Hah! That's exactly what three different doctors have told me about asthma during pregnancy! I had such mild asthma before pregnancy that I only used my inhaler about a handful of times a year. But then during my first 10 weeks of pregnancy, it turned so bad I was using my inhaler daily! I was prescribed various inhalers to improve things but I refused to use them because every doctor told me the same thing, that the meds were class C and not researched in pregnancies but seem to not cause problems. Um, I know I tend to live on the more paranoid side of cautious in general life anyway, but their overwhelming optimism about all of these medications didn't fly with me. I used my same inhaler as minimally as I could and then thankfully my asthma improved by my second trimester so I'm back to normal.

I've had such negative experiences with the medical model of healthcare over the years due to the fact that nobody has been able to tell me why I have so many chronic ailments in my early 20's and they don't know how to improve my quality of life..... among other reasons. Have the rest of you been able to find trusting doctors who have really helped your situations?

[cameragirl]

Luckily, I have a great neurologist.  He's the head of neurology, so I see his assistant when he's off doing whatever.  She's awesome, too.  I saw a rheumatologist there to confirm the diagnosis, but I don't need to see him unless things lean more that way later on.  I've got to get a new OB and new primary care though, and quick.  It's hard to explain to someone that hasn't been there, but it can be SO frustrating and discouraging to deal with.  I got brushed off for so long that it is hard to trust the medical system.  You've got to just shake your head though when say, the OB says to call the neurologist, and the neurologist says to call the OB. 

[cameragirl]

Btw - do  you know if the ladies with MS had vaginal or c-section births?  If I get some sort of remission, I'd like to try for a vbac.  If I'm in the state I am now, I don't think I'll get a trial of labor.  I know that they told me last time I could do pulse-dose steroids during delivery/recovery, but I do try to avoid steroids even when not pregnant.  (the side effects are killer)

[dot1]

My friend with MS had a vaginal birth (needed vacuum extraction).  It was her first birth.  She uses a wheelchair full time (paraplegia.  arms/hands work well).  Not one of her team members ever suggested she'd need a c-section and there was no medical reason for anyone to believe her pregnancy was high risk.  They just tried to support her mobility needs however they could.  A team of family physicians who run an obstetrics clinic for lower risk births handled care (which I think is a good thing for women - no financial incentive for the care provider to advocate unneccessarily for c-sections)....and this hospital has a lower than average c-section rate (while also having obstetrician care available for higher risk pregnancies).

She is still totally off her meds a few months later and successfully breastfeeding and still in remission.  She's such an inspiration to me.  I have a hunch that people who deal with chronic pain from chronic conditions tend to handle the pains of labour better than those who've never had to deal with much pain before.

[cameragirl]

Here is the article I mentioned if anyone is interested.

http://www.parentcentral.ca/parent/babiespregnancy/pregnancy/article/988820--little-known-about-needs-risks-of-disabled-women-during-pregnancy

[birdhappy85]

How are things going, cameragirl? Just thought I'd check in for an update! I hope your pregnancy is going well and that the spasms have been more bearable while you're off your meds.

[cameragirl]

I lost the pregnancy, unfortunately. I'm pregnant again though...5w4d. My betas are doubling and I have an ultrasound on Thursday to confirm the beta results. I'm crossing my fingers. Luckily the spasms aren't horrible. I was able to do some yoga yesterday, and hopefully I can keep that up. I still need to get in to see someone in maternal/fetal medicine. I've been having issues getting my records transferred...the office keeps trying to charge me for transfer of care documents, but they shouldn't. I need to see them before I can get IVIG again, though. Kind of frustrating. Thanks for checking, btw. I appreciate it.

[birdhappy85]

I'm so sorry to hear that, hon. I can't even imagine how difficult that must've been for you.  I hope you have a lot of support around you. I'm so glad to hear you're pregnant again, though, and I will pray that things go better this time around.  Don't you hate how transferring records is so much more work than it should be? Been there, done that! Such a headache. I hope they get things figured out so you can get the care you need. And that's wonderful you're doing yoga. I wish I felt more comfortable doing any sort of exercising while pregnant, but it has been a real struggle for me since my fibromyalgia has flared up and I'm having pubic symphysis pain. I can barely walk some days and just lay in bed. Here's to hoping things get better for the both of us! 

Take care!

[Ttarail]

I have chronic fatique, fibromyalgia and in this pregnancy, pelivic instability. This is my second pregnancy, I have a 6 y/o dd. Last pregnancy physically was ok. This pregnancy ( i'm 42 now,) has be difficult. First trimester too sick to excersice, now I'm in my third and I can barley walk or stand, by nighttime sitting is difficult. Instill struggle through an excersice program 5 days a week. I know if I stop I'm in real trouble.
Just because I'm used to dealing with pain didn't seem to help with the 48 hrs of labor easier last time. It was a home birth.

[cameragirl]

Originally Posted by Ttarail 

I have chronic fatique, fibromyalgia and in this pregnancy, pelivic instability. This is my second pregnancy, I have a 6 y/o dd. Last pregnancy physically was ok. This pregnancy ( i'm 42 now,) has be difficult. First trimester too sick to excersice, now I'm in my third and I can barley walk or stand, by nighttime sitting is difficult. Instill struggle through an excersice program 5 days a week. I know if I stop I'm in real trouble.
Just because I'm used to dealing with pain didn't seem to help with the 48 hrs of labor easier last time. It was a home birth.

I'm so sorry that you've got so much discomfort. It's always rough when you're pregnant and you can't take the meds you normally would.

It is really tough with me because working out can make it way worse, so I have to be careful to do something gentle. I'm trying to squeeze in prenatal yoga when I can to stretch out my tight muscles and hopefully gain some strength.

[birdhappy85]

I feel like a weight has been lifted off of my shoulders and I just had to share! My boss is actively interviewing people to find a replacement for me since I’m applying for short-term disability early (I’m 5 months along), but I had never told her what is really going on with me and why I’m struggling so much on the job because I didn’t know what to say quite yet – until today. I had explained previously that I have a lot of different health issues bouncing off of one another and they’re untreatable at this time, but I had a revelation last night and realized what the biggest issue of them all is that I have been avoiding facing for so many years… I finally worked up the courage and talked to her about cognitive limitations I’m facing and accommodations I will need if/when I return from maternity leave. I still don’t feel comfortable telling people that I have Tourette’s disorder and A.D.D. because I haven’t even admitted it to myself fully all these years since I’ve never been able to treat them (the meds for one worsen the other and I ended up with more tics). I didn’t want to put a name to my conditions when talking to her, so I left that part out. She was wonderful and understanding, thank goodness! I always just wanted to be normal and put on a façade for so long that I could handle anything. I was valedictorian of my college class, and I felt that expectations were even higher for me after that. I didn’t want people to think I couldn’t meet their expectations and my own, I guess… But as work tasks have become increasingly more difficult and analytical (I work in accounting), I have been visibly struggling picking up concepts and remembering things people tell me. One day I’d be picking up everything amazingly, and the next I’d feel like someone stole parts of my brain and I was lost. My boss and closest colleague have noticed and thought it was weird but didn’t know what was up. I know that the stress of pregnancy and whirlwind of worsened health problems have made my symptoms worse lately and that’s why I’m just at a breaking point cognitively… But I didn’t realize until last night when I stumbled across some articles on these disorders and it all came flooding back to me --- all the stuff I was ignoring for so long. I guess it’s time I admit it to myself and stop trying to be a perfectionist and put myself in situations where my ambition gets me in trouble. It feels great knowing that I’m not hiding at work anymore, and my boss knows what she’s working with. If they can accommodate me, great, and if not --- I will just find a different job after the baby is born, probably be a SAHM for a good time but pick up part time work here and there. It’s about time I take care of myself and stop feeling ashamed for things outside of my control!

[cameragirl]

I bet that was a huge relief to get that off of your chest. Sounds like you have a good boss! I had a hard time with my former employer because they looked down on me because of my health conditions. They'd use them against me if I was sick, had trouble concentrating and made a small mistake, etc. "You'd be such a good employee if you didn't miss work, etc. We're going to have to write you up because you took time off for surgery." Soo glad I don't have that load of stress on me anymore. I was working my butt off and got more done than the able-bodied staff, and yet I was looked down on. People that haven't been there just don't get it. They don't get how you struggle quietly, how you have to work twice as hard, how you come in even if you're feeling crappy and somehow make it work.

[cameragirl]

I just wanted to check in, and update things. I saw a perinatologist, and he recommended IVIG with other medications as needed. I am getting Gammunex C every five weeks, for three days at a time. It takes five hours each day. DH was laid off in May, so for now, I have the logistics worked out. I'm worried about him going back to work, and me having to deal with this on my own though. Not only do I need a ride too and from, I need a babysitter, and I need to arrange a private place to pump while I'm at the infusion center. I've been having to use my regular medication, but I'd like to step off of it some, especially as we get closer to the delivery. I've tried taking it only "as needed," but I don't ever get a break from the rigidity and spasms. As needed is every day, unfortunately.

How are the rest of you?

[jenrose]

Joining in. 

I get tired thinking about all the diagnoses that have been slapped around. I have hashimotos, and my thyroid is quirky and not entirely treatable. I don't respond like most people do to synthroid, it makes me feel so much worse. Plain T3 treatment was a nightmare too. I do passably but not great on Armour (actually compounded USP thyroid at this point, Armour is crap since the last reformulation). I was diagnosed by a naturopath as having adrenal insufficiency, eventually treated with steroids, but I had to wean off when I had a DVT that turned into a PE, probably triggered by the steroids.

I have het FVL, which is mostly a non issue until it occasionally tries to kill me.

I have treated sleep apnea, well under control with a CPAP. I have asthma that is completely 100% controlled at this point by magnesium supplementation. 

I'm obese (see item 1) and my weight seems to have very little to do with how much I do or don't eat. I got down to 1600 calories (at nearly 300 pounds) before pregnancy and was losing ZERO weight. But was stable at that weight for quite a while. But still... 1600 calories???

I've been diagnosed with fibro, but it may simply be a side effect of the thyroid not being fully managed. I'm fortunate that my dominant fibro symptoms are the fog and rapid fatigue. I only get painful flares when I run out of spoons. 

All of the above seem to contribute to a ridiculous level of exercise intolerance. Don't bother suggesting exercise to me, I will bite you. I get sick if I swim. The last time I started walking for exercise, I ended up in PT for achilles tendinitis and rotator cuff tendinitis from having a second rail installed so I could take some of my weight on my arms going up and down the stairs. I have some hypermobility, so yoga is actually a BAD idea for me. Profoundly bad. Exercise bike wreaks havoc on my knees, even a semi-recumbent one. I do some isometrics in my chair, and try to find activity where I can, but pregnancy managed to throw another kibbosh in it... even standing up was making me gag until I went on drugs to control the nausea. Now, I can stand up for about 10 minutes before I gag. 

All that aside... I've never had a pleasant pregnancy (my kids are 18 and 6 and I'm pregnant again. It takes me a LONG time to get over how much I hate pregnancy) but I've also never had a medically complicated birth, so we had our 6 year old at home and are planning another home birth. Thank god I live someplace where I can have a homebirth midwife and a perinatologist without either being afraid to work with the other. Despite everything, my glucose and blood pressure stay ludicrously ridiculously normal in pregnancy, and I birth simply, placenta falls out without a lot of help or waiting, and my boobs make milk. There are a few places my body hasn't failed me completely yet. 

I'm on Lovenox right now, until 35-36 weeks-ish, and will switch from that to a grape juice protocol for anticoagulation until I birth, then go back on lovenox until I can get out of the house for INR readings to switch over to coumadin for a few months. Then I'm off the anticoagulants for a good long time. 

This is my last baby though. I cannot do this again. The nausea alone.... 

Also, this year is unique. My 18 year old finished high school, and is taking a year off until she starts college. So this year, and only this year, I have a solid 18 months of support in someone who has no other job but to help around the house with her sister and helping take care of me. Not as a quid pro quo, but part of the reason we feel okay asking this of her (and she's willing to give it) is that we have enough saved for her to get through grad school at the local state university if she so chooses, without debt. She could go other places for shorter amounts of time if she chooses. But we get along well and she likes being helpful, and I like having her around, and it's turning into a special time. I love the maturing of our relationship into adult-adult rather than adult-child. And we've never been in a particular hurry for her to leap into independence, she's always done it well, and in her own time. I do not think I could do this if not for her right now. I don't think I would even have thought about trying.