@BostonBaby1 Thanks for the heads up--I've got a message into my doctor and the application's printed!
@Lindsayleigh1989 I don't have a si loc belt but I've been perusing. I will definitely ask about it at my appointment. If it helps my legs feel like they're still attached to my hips, that would be a major bonus!
@randypluskate I got mine off amazon some insurances may cover it though so you could check with them but it's been really helpful in making things feel attached
@randypluskate you are absolutely welcome dear. As for the trouble walking, yes I do have that issue and it is increasing as we get farther along. From what I was told I should be able to get one, but since I don't drive (couldn't get my epilepsy controlled. My choice, but then I let my license expire smh dumb on my behalf) if we can't park super close, someone helps me out at the door of where we are and parks. When I go get my license back, it's something I will probably pursue.
@mckcak23 actually your hopeful thinking is a lot more accurate than you imagine. Most people, if they have a mild case, are actually found completely on accident (during a scan for whiplash or something unreleated), so you are pretty accurate with the thought of many women giving birth without ever knowing. Our's is genetic (off the top of my head there are at least 9 woman on my maternal side with chiari) and all but 2 (1 being a teen still, and the other being me) gave birth full term, no c-sections with no adverse events. So if you aren't feeling this neurologist PLEASE get another opinion! Most neurologists/doctors in general know very little about chiari, let alone have had many patients with it. Please make sure you ask about how many patients he/she has actually worked with that where pregnant/gave birth under their care etc Because I've seen (and been too) quite a few that have a firm stance on birth with chiari, one way or another but have no actual experience with it. Just what they have read or know from colleagues. (Even had one fight with me, saying he knew what he was talking about because he "had a paper published", yet almost every word out of his mouth was complete opposite of everything else I had ever been told (even by other more knowing drs) or read). There just isn't a whole lot of background/research etc on it, so please don't take this new dr's opinion at face value and don't go against what your gut says!
Can I join the chronic health issues club? I have celiacs, and honestly it's all pretty new for me. I was diagnosed in September, and was pregnant by early October, so I still have no concept of what it's like managing while not actually being pregnant. Celiacs has so many crazy and random symptoms that it has presented in the form of chronic nausea, anemia, migraines, and chronic fatigue syndrome (plus a bunch of other little stuff) over the years. And infertility, of course.
So far this pregnancy it's been a lot of learning how to manage with a food based auto immune disorder, including glutening myself for the first time in a big way last week (which was crazy in the way my body reacted). I have a lot of questions about what this means for my kid, when we can test him for the disease reliably, etc. I'm kind of excited and curious to see what managing it all looks like when I'm not pregnant, since at this point the celiacs restrictions have blurred with the pregnancy restrictions and I forget sometimes that I will in fact get to have margaritas back in a few months (RIP, bagels).
@Weville I really missed them during the first trimester. Thankfully I recently (like, this week) found really good gf bagels that don't suck at all and actually taste like real bagels. I feel like I have a part of my soul back.
@elenabrent That's amazing! Three of my cousins have celiacs (and their dad) and the learning process can be so intense, although they are all doing so much better since the diagnosis. One of them really missed baked goods and got inspired to do something different. She just finished school to be a pastry chef and her gluten free creations are ridiculous
@Weville that's so great! I totally felt better about the whole situation when I nailed down a really good gf biscuit recipe. It made everything else easier to handle.
I'm bringing the thread back! I was just wondering with the other epilepsy moms how your heads are doing? Especially this last week I've noticed I'm spacing out a lot and today had my usual disoriented burn out feeling for post seizure without having had a complex partial. Got me thinking maybe I'm having absence seizures, they aren't something I have experience with but damn it's weird. Anyway, I have a checkup on Monday so obviously I'll be bringing it up, got me thinking I wonder how everyone else is doing as we get further along
I also have RA (ok that's a lie- I have MCTD and sjoegrens but those two diagnoses are simply because hey can't really figure out what I actually have.) I've been somewhat lucky so far that my hormones have made the autoimmune stuff better for the most part, but I feel the inflammation and dryness still. My biggest fear is the rebound flare after giving birth. So your symptoms revved up at 5 weeks after giving birth for your first child? I'm so scared of that. My supervisors at work are curious to know what the expected duration of my maternity leave will be, but I don't know if I'll be able to move after my body has recovered from childbirth and my hormones have calmed down. I just keep hoping for the best, but since I work long days on my feet, the best might not be conducive to work still. It's an adventure, though. I'll get through it. I'm not the first woman with an autoimmune disease to have a baby (duh) so I refuse to let myself be the most dramatic.
@Allisogna do you get the full 12 week off for work or are you planning on going back sooner. I would definitely be conservative in the number you give them just in case you do get flare ups. You could even have your dr write you a note now for that reason if they are pressuring you back into work.
@Weville I was just thinking about doing a check in the other day, but couldn't decide whether to do a check in post or just bring this one back up. I hope your appointment goes well, and you get answers. I've had absence seizures forever, and it sounds like there is a possability. Do you always notice them? I know with mine, sometimes (a lot of times) I don't realize I had one until someone says something (usually because I stopped talking mid sentence or stopped doing what I was doing), but if it is a super short one, I do have just the disorientation/confusion/brain fog/spacey feeling. I had noticed (but hoped I was over reacting, until my mom and DH commented about it as well) that I am having the confusion/spaciness and some more short seizures a lot more frequently lately. I feel like the most I have had since getting pregnant. Not sure if it's related to everything changing/heading into the 3rd trimester etc or of it's a fluke, but definitely noticing an increase in things as well. Someone said maybe it's a mix of baby brain and an increase in activity as our bodies adjust to baby growing/more changes as we go farther along. Try to take it easy, and you'll be in my thoughts!
@joberkiser My husband made a comment about it yesterday when I spaced out on him, I just know I've been feeling off and chalked it up to pregnancy brain. It makes sense that the combination of extra work on our bodies and pregnancy brain could be causing us both to have some wonky brain activity.
I I keep doing the countdown to being moved in, one week and I can seriously relax for a couple days! Take it easy yourself, thank you for the warm thoughts
@Weville can you up your dose? I've had to go up twice due to feeling shaky. My old neuro said to go up a certain amount to a max she told me. I feel heaps better and will go up again if I need to.
@LilLambie I actually went off my drugs so it is possible they may put me back on them. I had a really hard time adjusting at first to them so it is possible I'll continue drug free unless tonic clonic seizures start
I don't know why I didn't see this post sooner! I'm high risk for several reasons but I also have chronic issues that effect me without them. I have epilepsy but I am not currently on the meds. I also suffer from depression which I'm on meds.because for. IBS, asthma, eczema, migraines, and kidney problems are also an issue.
Surprising my IBS isn't much of a problem this pregnancy! It's wonderful. Everything else is under control too though my asthma gets bad depending on the weather. I live.in Wisconsin so it's been hard with the changing weather lately!
@TM14 my asthma has been an asshole this pregnancy and has gotten much worse/less controlled than before. Has yours worsened at all? I have found it difficult to differentiate between being breathless because of the belly/baby all up in my business and actual asthma restriction. My eczema is also a disaster.
@TM14 I feel you on the weather change! I'm in MN so this maybe winter maybe spring has been awful for my allergies I can't imagine how bad it is for asthma. So glad to hear your ibs hasn't been terrible for your pregnancy!
Hello beautiful ladies! It is coming up on a month since I've checked in with you lovlies. So how are we doing since we're coming into/entered our third trimester? How are your symptoms/treatments/over all and how is it affecting you/are you dealing with it mentally/emotionally? Just wanted to check on you all!
Re: Chronic health issues and pregnancy
@Lindsayleigh1989 I don't have a si loc belt but I've been perusing. I will definitely ask about it at my appointment. If it helps my legs feel like they're still attached to my hips, that would be a major bonus!
As for the trouble walking, yes I do have that issue and it is increasing as we get farther along. From what I was told I should be able to get one, but since I don't drive (couldn't get my epilepsy controlled. My choice, but then I let my license expire smh dumb on my behalf) if we can't park super close, someone helps me out at the door of where we are and parks. When I go get my license back, it's something I will probably pursue.
So far this pregnancy it's been a lot of learning how to manage with a food based auto immune disorder, including glutening myself for the first time in a big way last week (which was crazy in the way my body reacted). I have a lot of questions about what this means for my kid, when we can test him for the disease reliably, etc. I'm kind of excited and curious to see what managing it all looks like when I'm not pregnant, since at this point the celiacs restrictions have blurred with the pregnancy restrictions and I forget sometimes that I will in fact get to have margaritas back in a few months (RIP, bagels).
I I keep doing the countdown to being moved in, one week and I can seriously relax for a couple days! Take it easy yourself, thank you for the warm thoughts
Little boy due July 31st 2016
Surprising my IBS isn't much of a problem this pregnancy! It's wonderful. Everything else is under control too though my asthma gets bad depending on the weather. I live.in Wisconsin so it's been hard with the changing weather lately!
Also I think spring is broken. Good to hear it's not just Wisconsin!