Tuesday, January 22, 2013

Where'd my toes go?

I have to lean over a bit to see my toes now. If I don't lean, all I see is boobs and belly.

I'm waddling quite nicely now. Somewhere between a duck waddle, and a Quasimodo waddle-shuffle, depending on how much/which things hurt.

I've got some lower back pain from my tummy throwing me off-balance, and I have to stand, and rock myself back and forth to fix things. It's amazing how many things are fixed by rocking... Lower back pain, dislocated tailbone, dislocated pelvis, constipation, gas pain, and restless baby... Gently rocking for a few minutes gets everything back to where it should be, and convinces my little monster that my ribcage should not be her hideout.

On another note, I'd like to find the person who smuggled steel-toed boots, a pointy helmet, and a sledgehammer into my womb. Okay, not quite, but it's amazing how strong she is in there.

I'm getting a shiny new car this week, because my current car is crap, and I don't think I'd feel safe having a baby in it.

I think my appointment with the High Risk Pregnancy clinic next week is finally going to get me an OB/GYN. Amazingly, at 6 1/2 months, I still don't have one.

My appointment last week with the Chronic Illness & Pregnancy clinic was interesting. For 2 hours I had a nurse, an intern, and a doctor asking me question upon question, and writing notes.

Weird part, though, is that they knew enough about EDS that they told me, "we're not concerned, because you don't have the vascular type." Which is great, they know that Type IV is the most problematic when it comes to pregnancy complications, and such... But don't sit there and tell me that I'm going to be fine, especially after I've detailed the extreme dislocations, the extreme pain, and the scary-as-hell near-syncope events I had all through my first trimester, coupled with the ever-looming possibility that this pregnancy may end with me in a wheelchair. Telling me that "at least it's not type IV" doesn't earn you any brownie points. It doesn't make me feel better.

Oh well. At least they knew some things.


Appleshoe said...

I was diagnosed with EDS when I was 6 and am now pregnant with my first child (a few miscarriages along the way). He is due in April as well. Your blog is helping fill in some gaps about EDS and pregnancy for me. My midwife posed an interesting question. Do you know if there are certain foods or a diet to follow that helps with EDS? Not just the gastrointestinal problems but the over all joint health and pain? Pre-pregnancy I was gluten and dairy free and that helped me a little. I've also seen a lot of people with EDS say they have benefited from a vegan lifestyle. Just curious if you have heard anything. Thank you and best wishes for you and your wee one.

BubbleGirl said...

I've heard a lot of people saying that gluten-free helps with a lot of GI issues, and avoiding nightshades (potatoes, tomatoes, sweet and hot peppers, eggplant, tomatillos, tamarios, pepinos, pimentos, paprika, and cayenne peppers) can help stave of fjoint pain. Also, making sure you keep up with your vitamins and minerals (many of us are B12 deficient, as well as magnesium, calcium, iron, vitamin C, and vitamin D) so have your doctor check your levels for those.

I, personally, have a lot of food allergies, which makes following a gluten-free diet nearly impossible if I don't want to starve myself, and I didn't get any relief from it when I did try it.

I hope you find the diet that works for you!

Appleshoe said...

Thank you. I was Gluten and dairy free before this pregnancy and will be again after. I guess I'm lucky because it did help me (I understand annoying food allergies all to well). It's a whole new way of living. Take care. You have a good blog and I'll be stopping back frequently I'm sure. best of wishes for you and your wee one :)

July Rose said...

I was diagnosed with EDS in 2008. I got engaged last year and since then, there has been a lot of baby talk. My fiance is worried, and so am I. People like us live with pain and uncertainty. There is no reason to sugar coat OR minimize what we live with, and you don't, but still manage to uplift with humor. We can only, in your words, deal with it. Thanks so much for sharing. I just got up the nerve to start a blog myself. I hope it eventually helps other bendies like yours has. Safe wishes for you both. I'll be following closely. :)

BubbleGirl said...

Thank you both for the well-wishes!

July Rose,
When I was first diagnosed with EDS, the information available was absolutely minimal. What I found online had me believing I'd be dead at 30... They weren't so good at citing the different types back then, and the internet (as well as the info on EDS) has changed a lot since I was diagnosed!

I had originally thought I'd never risk getting pregnant, for my own health, as well as never wanting to pass EDS to my kids. But I figured, with new medical advancements, my kids should have it easier than I did growing up. Also, since I know I have it, I will be more vigilant in looking for it in my kids (my parents did not have EDS, and it took many years for them to realise that it wasn't "growing pains" or "rebellion" as my symptoms showed up at the same time as puberty, my parents getting divorced, and me being moved away from all of my friends).

Also, even though there is a lot of pain and uncertainty, I really do enjoy life. If my parents had known I would have EDS, and the amount of pain I'd be in, and had opted to abort me, or abstain from having children, it would suck to not have been here. There are no guarantees that anyone is going to have healthy kids.