Posted 5/11/2015 12:27 PM (GMT -5)
It is a little lengthy but I felt the need to share here as well. I put this on my personal Facebook page. But just realized I'm a few days early on IBD day! Here goes:
In honor of World IBD Day I will finally clear up some things lots of people ask me about. Apparently I “like” lots of pages and posts on health, healing, etc.
I have Ulcerative Colitis. It is a Bowel Disease. No, I do not have IBS. Yes, I am sure you know someone that has Crohns.
Yep, I look “normal” and yes I try to function “normally” as much as possible. Most days I feel bad but try to smile so no one notices.
I am super immune suppressed. So if you cough near me I will run. I will give you the side eye if your sick kid is touching stuff at Target. When I get sick I’m sick for weeks. I don’t just bounce back the way most people do.
Yes, I watch what I eat. And yes, I do know that I shouldn’t have wine. I don’t need your opinion on those things. No, stress does not contribute to me feeling better or worse.
I have a great set of doctors and I do not need another opinion (but thanks for asking).
I have to fight insurance on everything. Everything. They put up a fight to pay for all my meds. Try having an outstanding balance at your doctor’s office for $14,000. And that is for one infusion of medicine.
Oh yeah, I get infusions every 8 weeks and they stink. The side effects are a nightmare. Oh and yes, I have tried the holistic route. That cost us a ton of money and didn’t help.
Yes, my face is puffy. I have to go on and off steroids yearly. Please don’t feel the need to point it out. I’m embarrassed enough.
I do appreciate people like to offer their help or new ideas. I am SO open to them and would love to not have to deal with this anymore. You don’t have to feel bad for me either. That’s the worst.