Life has gotten crazy lately, but I’m still trying to keep everyone updated on here. It’s hard to keep up with my own life sometimes, let alone remembering to blog about it for my followers and family members on here! Medically, I’m still a wreck and emotionally I’m even worse off. My family has been dealt a lot of blows in the last month. We’ve lost a few people to COVID-19 and others to unknown reasons. It seems as if I am surrounded in death and dying folks lately and I’m surely in need of a break from it.
My bladder flare from Hell seems to have finally ended. It’s been gone for a few days now and I feel confident in celebrating my release from the confines of Interstitial Cystitis – at least for a few days. I know that the flare will be back. It always comes back and there doesn’t seem to be much that I can do to avoid it. I’m still waiting for Spokane Urology to schedule my cystoscopy with hydrodistention but the hospitals are still too full with all of the COVID-19 patients. Until this pandemic is more under control, all elective procedures are canceled. It’s a sad reality for those of us that need our pain-relieving surgeries and procedures to be done, but unfortunately, there just isn’t much that anybody can do about it. So, I pop another pain pill and pray to every God that will hear me that I’ll be able to get this procedure done soon.
I have an appointment with my rheumatologist on Tuesday. I haven’t seen Dr. Courtney in about six months and I certainly have some issues to bring to her attention. I fear that she is going to have to switch my medicines around. She was hopeful that increasing my dose of Plaquenil would ease some of my joint pain, but it seems to be making it worse instead. I’m just hoping that she doesn’t want to put me on the infusions, yet. I don’t live around the corner from the hospital anymore and getting there would just be too much for me right now. My medical anxiety is working itself up pretty high about the appointment, but for the first time my husband will be allowed to join me. That has not happened since before the pandemic began. He’s never even met this particular doctor. They always make him wait outside for me. If they weren’t the only rheumatologist option out here, I would have left the practice a long time ago!
My health is still failing and my esophagus is starting to act up again. I was doing great for about three months after they stretched my esophagus, but as of last night I started choking on my food again. I’m mildly concerned about that. I can’t afford to lose a bunch of weight like the last time that this was happening to me. I’ll definitely be bringing that up to the doctors this week as well. I’m afraid that I’m going to have to have another upper endoscopy done and I really hate those procedures. Hell… I hate all procedures thanks to my excessive medical anxiety and PTSD. I’m so sick and tired of being sick and tired, but unfortunately, there is no way for me to run and hide from this reality. I’ll always be sick and being sick forever is not the way that I planned on living my life. Even all of these years after diagnosis, being sick forever is a hard pill to swallow.