The days of ignoring my health are long gone. This has been one of the hardest adjustments for me to make so far. Prior to diagnosis, I NEVER went to doctors’ offices. I avoided all medical offices at all costs. When I was diagnosed I promised myself that I would stop avoiding them. It turns out that was a lie! My health is bad and so is the prognosis at times, and the time for me to get serious is here. I had a flare that lasted through the entire month of May. My liver was on fire for the entire month. That was the worst pain I had ever endured to date, and it was enough for me to get serious. I acquired medical insurance the next month and am now back under the care of a medical professional.
This may not seem like much to most people, but for someone like me who suffers from medical anxiety-this is huge. I have not yet been able to go to an appointment alone, but at least I am getting my butt in there. I have appointments scheduled with several specialists over the next couple of months, and a possible surgery is looming over me. Medical anxiety is a very real thing and it has made my autoimmune life absolute Hell at times. Luckily, I have an amazing husband who knows exactly how to get me where I need to be when I need to be there. Big shout-out to him… he rocks and I would be lost in so many ways without him.
I went to the doctor earlier this week and we finally ran my liver labs. When you have PBC, you are supposed to get your labs done 2-4 times per year and I had been avoiding mine since my hospital stay in January 2019. So, after 18 months I finally got word that my liver levels are all in the normal range, which indicates that I am still responding to Ursodiol, which is the only FDA approved treatment for PBC.
I have an appointment scheduled with a gastroenterologist next month. Apparently there are no hepatologists on this side of Washington, so a GI doc is the best that I can get for now. I’m nervous that the doctor will not know much about my rare autoimmune liver disease. Most of the doctors that I have had in the past had no clue what PBC was or how to treat it. For the first 6 months after diagnosis, every single doctor that I saw would just refer me to someone else. I finally gave up and quit looking for doctors.
Although the flare month of May just about killed me, it was a necessary evil. I needed that flare to remind myself that I am, in fact, still sick and most certainly still need to take care of myself, take my medications and keep my medical appointments. Like I said earlier, this is my greatest challenge. I have extreme social anxiety so it’s hard to talk myself out of going anywhere, let alone the doctors office where I experience medical anxiety. I try to remind myself that going out in public for a short period of time is much better than facing the flare from Hell again. Day by day, this is how I survive.
Stay strong autoimmune warriors and loved ones! Love and light always!