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Any disabled/chronically ill parents out there? - Page 3

post #41 of 46

Hi Everyone!

I don't come in Health and Healing much, but i saw the thread in FYT, and decided i should come join. I'm Bex, in my mid twenties, and have Ehlers-Danlos Syndrome type III.  Basically, i have severe hypermobility in my joints, and a whole lot of pain.  I am not yet a parent, except to my kitties, but enjoy hanging out here anyway.  I don't post all that often, but i have been thinking a lot recently about how my disabilities will affect my ability both to have and raise children. In my mind, I will be a parent, more or less whatever i have to do to get there, i will.  I worry about carrying a pregnancy, as the worst of my joints is my spine, and i use crutches or a wheelchair to get around, but at the same time i really want to experience pregnancy and birth.  I don't know, i may have to make it up as i go. 


Anyway, i hope that all makes sense, i'm a little all over the place tonight, i'm somewhat terrified of the next two weeks, i work in a college bookstore, so the first couple weeks of the semester are crazy, and i'm not feeling up to it physically, and while i'll do what i can, it's going to be hard.  I hope the new year is treating the rest of you better!

post #42 of 46

Happy new year, everyone!

Silverbird: Thanks for restarting this thread! I'm so sorry to hear about hubby, he is in my thoughts and prayers...I wish you the best of luck with your treatment! Hopefully you won't need to wait too long...

Bex: Welcome! I'm sorry to hear about your condition, it sounds so painful. I hope you'll get to be PG someday and feel good!

Well DH has been working in a low paying job outside his field for the past month, with still no success of finding a good job...It is helping us not deplete our savings as much, but it doesn't cover everything...Meanwhile, I need PT and other treatments, which are expensive without work insurance (we live in Canada but things like dentistry, PT, acupuncture, etc. are not covered). I am happy being a homemaker even though it happened by accident, but I am afraid I'll need to go back to work soon as our 8-month emergency fund is now reduced to a 4-month one... 

post #43 of 46

Hi, just saw this thread and decided to jump right in! My dh is a quadriplegic and we are now expecting baby #3. The mobility issues bring about some challenges, but we just get creative! My older two are 9yrs old and almost 8yrs old and they handle their dad's disability really well! It really helps them to be "blind" almost to disabilities in general. I notice that they hardly even notice when we come across other's with varying disabilities. It also helps that dh doesn't let his disability get in the way of living life. He works hard so I can stay home and homeschool. He also is very active: bike riding, jet/water skiing, rock climbing, sky diving. 


Anyhow, just wanted to jump in and say HI!



post #44 of 46

Hi Elisabeth! Welcome! I am sorry to hear about DH, but it sounds like the whole family has well adjusted! Congrats on baby number 3!

post #45 of 46

Well, I landed myself in the ER the week before Christmas because my pain levels go out of control and I couldn't keep anything down for 30+ hours. Damn. As a result, I've got a handful of new meds and we quadrupled my dose of neurontin. And it's been gently suggested by my husband and my doctors that I need to stop homeschooling our kids for a few months. :(


So DD starts first grade on Monday. I'm keeping DS home with me for a few weeks to see how we do. If I'm not getting enough rest or if he gets really bored without his sister to play with, we'll look at a preschool program for a few hours a day. I seem to do ok when I'm getting 15 hours of sleep a day. Not really practical in the long run. (Or even in the short run.) Still working on figuring out if I'm just on the severe end of fibro or if there's something else going on as well. Muscle biopsies to rule out a metabolic disorder are scheduled for sometime next month.


Has anyone ever heard of Central Sensitization Syndrome (or something like that)? The phrase pinged my radar yesterday through a friend's Facebook post, but I haven't found much info about it, except that it seems to be tied to fibro and chronic fatigue in some way. It's another lead to follow, maybe?

post #46 of 46

That's such an ordeal, I'm sorry to hear! I haven't heard of this Syndrome but I hope you feel better!

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