“Scar Tissue that I wish you saw…”-Red Hot Chili Peppers
Howdy Everyone, Hope you are all doing well while we are still in the middle of a pandemic .
As most of you know , since Halloween 2014 I have been struggling with an undiagnosed illness. Flash forward to present day and we are at a place of treatment. I have been getting Rituxan infusions . We moved them up from 6 months to 4 months . It was great timing since a flare has been brewing .
Yesterday I had my treatment. I had a great nurse , they have all been pretty great and kind but yesterday, he was awesome . He sounded like Agador Spartacus from The Birdcage .
I’m a hard stick for blood work or anything to do with IV’s or infusions . So I make sure to tell whoever is doing the sticking where the best place is . It’s worked well for me and I have not been a pincushion since I adopted this practice . However , yesterday , upon trying to stick me , the nurse noted that I have a lot of scar tissue in my arm where I usually get stuck at .
It’s silly , but it never occurred to me that this could happen . It sucks. I am going to most likely be a pin cushion again. It sucks cause for some reason, in the realm of this undiagnosed journey, I felt like I had some control over a tiny aspect of this bullshit. I could control where I was stuck. You know what I mean?
We moved my appointment up from 6 months to 5 months, now I am at 4 months. I think that is the sweet spot. The past couple of weeks I have had the exhaustion setting in and within the last week my armpits started flaring up as well as my neck getting sore too. I am hopeful that by doing the infusion now, I will not be subject to a bad flare this winter.
So , infusion went as planned, no issues…. until Thursday. Allergic Reaction. Ugh. I woke up with my face on fire and it was red, blotchy and I had some swelling. To the point where I had to leave work and run to CVS to grab Benadryl. I was at work so I only took 1 pill. Didn’t work and instead I was kinda out of it. I got a hold of my doctor who told me to take some more Benadryl and if that did not work, head to the ER. So, I headed home to see if I could avoid the ER. Thankfully , a few Benadryls and some sleep helped the reaction wear off. I have had a reaction before but it happened when I was getting the treatment, not the day after. Just another way that Meganitis has a hold on my life.
Here’s the thing – for most people dealing with a reaction like I was having, they would of gone to the ER. But honestly, what the fuck am I going to do in the ER? Explain that I have been battling an undiagnosed illness that no one can help me with? They would not know what to do with me. It would just be a waste of time and money. In addition to the fact that I do not “look sick” .
Scar Tissue is defined as ” Fibrous tissue that forms when normal tissue is destroyed by disease, injury, or surgery”. My scars are all within. I wish people could see what its like living in this body that lets me know how much it hates me. I try so hard to not let this take over my life, so damn hard and I fail every time.
My nurse asked me what my pain was on that stupid pain scale 1-10. I said 5. He said ” Oh honey, I’m so sorry” ( all the while sounding like Agador Spartacus )
Truth is a 5 ain’t so bad.
Maybe some day this will all go away. Maybe someday I will find away to cope. Until then, I will try to keep the scars hidden .