I have severe Crohn's disease and I'm going through quite a journey. I've stopped responding to conventional treatments and here's my story as I try to find a way to get my life back!
Saturday, October 19, 2013
Update: One Year Followup Coming Up Fast
Sorry it's been so long since I've posted. Of course as you know, things should be slowing down as the process continues.
I celebrated my one year 2nd birthday aka the one year mark of the day i received my sister's cells.
So here's how I'm doing:
I've been great Crohn's wise up until the last few weeks while I'm having a minor flare. Since I'm not on any Crohn's meds, I can't complain but they are keeping me on my transplant meds longer than usual. Since my transplant, I have been diagnosed with Fibromyalgia, Severe Anxiety Disorder, Manic Depressant, Bulimic (ongoing, I'm just finally able to speak out about it), PTSD (from my previous abuser of over 2 years), Asthma, a conginital heart defect called PFO, basically a hole in my heart, Osteopenia,chronic insomnia and migraines (apparently caused by debris getting into my brain from the PFO) and a bunch more.
My memory is still off and sometimes I find myself not able to recognize where I am, even in my own home. Sometimes I find it hard to find the right words. That gets very frustrating, but I'm hoping as time goes on it'll wear off.
I have made the decision to get my tubes tied this year under the advisement of my gynocologist. It's a thought I'd considered for years but didn't think any doctor would do it because I'm only 26 and have no children. But with my crohn's as bad as it was I'm terrified it will get worse and hurt me or the baby, not a risk I'm willing to take. Also no fybromyalgia meds are approved during pregancy which means I'll be in 10x the amount of pain im in now if not more. Also with osteopenia, carring a baby means broken bones, including in my back and spine. With all the risks involved, I can't imagine bringing a child in this world with a mother under my health condition, not to mention what's hereditary. This is just not an option for me. It's not a decision I WANT to make, it's one I HAVE to make and at 26, I'd consider that a fairly mature decision to make. A lot of weighing the benefits vs the risks and unfortunately the risks are too high. and there's always adoption. I've always wanted to adopt anyway. There are millions of children in this world who need good homes and good parents and one day maybe I can provide that.
Well, theres the update. Hope to not keep you waiting so long for the next one!!