Getting Over Myself and Getting On

Talking about some of my health issues publicly has been quite a challenge for me. I typically gloss over less publicly acceptable aspects of being sick, and some things I haven't even publicly addressed. A dear friend of mine tells me time and again that I don't have to tell everything. It's my story to share as I wish. I share a link when I post a new blog on my Facebook profile so my friends know a new one is up. And I sometimes hesitate over what to say because there are people on my list that I don't necessarily want to discuss this stuff with. Anonymity would be nice, I think. I mean, does the person I went to high school with, who I never really interact with, need or want to know about this? What about the mother of a child my child goes to school with? I live in a small town and people need to talk. I'm now at a point where I don't think I really care anymore. If someone thinks less of me because my body has betrayed me on multiple fronts or because I am willing to talk about it because so many people I run into feel alone, then I suppose that says more about them than me. I have also noticed personal stories on this subject are severely lacking.

My last post touched on this but today I have decided to discuss it much more in depth. I have been fighting an autoimmune disease called Eosinophilic Cystitis. The bottom line of this is it's like having a raging bladder infection without having one. A certain class of white blood cell known as eosinophils have seeded into the wall of my bladder and cause constant irritation. Here is a brief overview of EC. If you read the link, you might have notice that it says the disease goes away after treatment. Awesome, right? About that... I have what's called a refractory case, meaning it doesn't respond to treatment. For the past year I have been through one treatment after another. God bless my doctor for continually looking for more ways to treat this that doesn't involve removing my bladder. We have done medications rounds- twice, steroid injections directly into my bladder while I was under anesthesia, 12 weeks of drug instillations (where they put a cocktail of drugs directly into my bladder via catheterization and made me hold it for 20 minutes), I got a second opinion at Mayo Clinic in Rochester, MN from one of the leading urologists in the country, and began a heavy anti-rejection drug called Cyclosporine. Currently I am 4 months into Cyclosporine treatment and it has yielded some positive results but hasn't fixed the problem by any stretch. Last week my regular urologist requested that I meet up with her colleague who would be the urologist who would perform surgery on me if that is the route that is needed. I met with this doctor and really liked her. She laid out a few options for me ending with where this wild ride may end up; bladder removal. I am down to two more things I can do before my back is to the wall and removal is my only option. I can continue with the Cyclosporine for a little while longer to see if it further heals my bladder, or I could try Botox injections to see if that helps. After that, cystectomy (bladder removal) is all that is left.

I've given an overview of what I'm fighting here and where I am in that fight. Let me tell you what it's like. Constant. Pain. It's like being stabbed in the pelvis all the time. It hurts to pee. I can't do things like go to a movie because I have to pee every 20-60 minutes. Road trips are a pain and getting stuck in traffic is a terrifying prospect to me. That timetable also applies to night time. The longest I have slept in the past 2 years has been about 3 hours and that was one time. Most nights I am up every hour. Combine that with the constant fatigue I experience with my other 4 autoimmune diseases and I think it's safe to say I'm living some version of hell on earth. This isn't information I'm sharing for attention or pity. I'm sharing in case someone else out there is struggling and wonders if they're alone. They're not. You're not.