Medical Anxiety: A PBC Update

bcff1703-20aa-42be-aebe-9ef8f9ed886bThe 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.

img_0404I 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.

wp-15840562641004301450231335173422.jpgI 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!

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