Tomorrow I go for the first of four infusions to treat Cryoglobulinemia. This is a super weird and rare disease where I get into trouble in my blood drops below body temperature. My husband says I’m part of the Legion of Substitute Superheroes which is code for this disease is lame. I’ve been on steroids and immunosuppressants since April. My head is the size of a basketball…it’s not cute and I’m feeling pretty yucky. However, God has definitely allowed me to see HUGE blessings during this time and I’m super grateful for that! I’m hoping a positive attitude and winning smile make up for the fact that my glasses don’t fit on my head anymore and no amount of eyeshadow is going to hide my moon face (Prednisone…you are the devil).
I’ve been treated for kidney disease for 4 years and now (thanks to the world’s best neurologist) this “cryo” thing has emerged (I can also use slang like “cryo” because that’s how the peeps in my support group talk) we need to up our game and take care of this because as I like to say “winter is coming.” Enter infusions…goal being to kill my B cells and reboot my system and get my body to stop hating me and attacking itself.
I received a text confirming my appointment and was surprised when the text added my seat assignment, Chair #4. I’ve been thinking all day about who will be in Chairs 1, 2, and 3. Will I see them? What are they in for? Do we all start at the same time? Do we all end at the same time? Will I have to talk to these people? Will I WANT to talk to these people? I’ve had some nervousness over doing this infusion for 2 reasons. First, I don’t know what to expect and I don’t want to have an allergic reaction to the medicine. Second, my husband thought it would be reassuring to show me a YouTube video of someone receiving this infusion of medicine. I’m pretty sure he picked the world’s worst case scenario to show me because after watching everything that could possibly go wrong happen to this poor person, I must admit that I was completely terrified.
Today, thinking about the occupants of chairs 1, 2 and 3 has really allowed me to take the focus off of myself and think about these other people. I’ve been praying for them and through prayer felt much calmer about the experience and what will or won’t happen. God’s in control. I trust my doctors with this course of treatment. I believe that I’m in Chair #4 for a reason.
I’ve got my book and a new season of Call in the Midwives loaded on my iPad. I hate those cliche sayings “let go and let God” but some reason, cliche is on the brain and that’s what I’m thinking…