Things to Think About

Scar Tissue

“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 .

Things to Think About

Demons of Pain

If you are one of the lucky ones like me that deal with pain on a daily basis – here is a soft high five for ya!  My normal daily pain I would say is about a good 7 or 8 on that happy little pain scale at the doctors office.  You know which one I mean,right? Standard-Pain-Scale

They should have a chronic pain scale that goes higher.  This past month – I am a solid 11.  Spinal Tap Style…. ( you millennials prob don’t get the reference, google This Is Spinal Tap ) It royally sucks.   I know I have bitched about this before, but it fucking sucks.

Not knowing what is causing my issues fucking blows.  If I had a cause, I could treat the cause instead of treating the effect as we are now. Like, if you have cancer – you get chemo, diabetes – you take insulin , cough -cough drops.  I am stuck with no cause.

I am at the mercy of my body giving me no symptoms or warning – the flares just hit and  I am in the middle of a long one.  I know it could be worse and I am grateful that its not but this shit is getting old.  I have been doing my Actemra shots each week but currently I am waiting for my shipment to arrive. Specialty pharmacies are great, lemme tell ya.  So I was getting my shots from CVS Specialty pharmacy, but I got a new health insurance and have to go through a different pharmacy. I was on the phone with them all week, they kept transferring me to a voicemail that specifically says ” leave your name and number….blah blah blah and we will call you back ….YES, WE WILL CALL YOU BACK ”  Left messages all week and finally complained that no one called me back and I got to speak to someone.   Problem is that I needed to take my shot on Thursday night. Its Sunday. And my shipment won’t be here til Tuesday.  They did say I would not have to pay the co pay for my trouble,but honestly, I don’t care – I just need my meds.  Ugh.

It sucks to rely on something to feel better , even when its not working good.  But the potential is there and it gives me hope.

I have thought about going back to the drawing board and taking all of my tests and starting somewhere new, like a 3rd or 4th opinion.  I don’t know if that would be worth it or not.

I am sorry this is a pity party, but  I am frustrated as hell.

I haven’t been to the gym in  a month and I am pissed. But I hurt.  Its hard enough to be me day to day and get through what I need to .

In other positive news – I am still steadily losing weight.  Currently down 72 pounds!!!!  I am definitely navigating eating better.  Thanksgiving was different this year, had to really pace myself and certainly did not eat nearly as much as usual.

So, I have been thinking.  There has got to be some medical student , some doctor, some medical professional who is looking for a case.  Who wants to be the person to give an actual name  to Meganitis?  I am serious.  If you want to take a crack at it, hit me up!

I don’t think that its too much to ask to ween the daily pain down to a 4 or a 5 if I won’t ever be without it.

I just gotta have hope that eventually I will have an answer and feel better.

Until next time folks -Just gotta keep swimming !

img_1087-2