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

The Eve of the Day That Could Change My Life

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Hello Everyone!

I know its been a while, I feel like I say this all the time.  It’s not you, it’s me, lol.  So, let’s catch you up.  Had the weight loss surgery and that has gone well. I am kinda stuck at 80 lbs.  Hard to move since everything hurts, so my exercise has been no where near where I need to be.  Meganitis has really been kicking my ass lately.  It really does suck.

Its hard to believe but I do try to not let it get me down, but sometimes, I’ll admit, I am circling the sinkhole.  Being in a state of constant pain is quite frankly exhausting.  But , there is a glimmer of hope on the horizon.  I have been through lots of medications trying to find a treatment that works while trying to figure out what Meganitis is.  I have done methotrexate ( Pills and injections), humira, prednisone, gabapentin, Actemra , and cyclobenzaprine ( at night ) .  Everything has failed or stopped working after a bit or lowered my already low immune system.

Which brings me to where I am at now. My Rheumetologtist suggested we try IVIG infusions .  After bloodwork, my IGa was really low which could cause anaphalactic shock apparently if I got the infusions, so I was sent to an Allergist , which was then changed into going back to the Immunologist.  Luckily , I was able to get in pretty quick to se him .  We went over everything and he told me that the IVIG infusions would help my immune system, as I would not get as sick anymore, but it would do nothing to help with my pain.  Big issue for me as the pain is my number one problem.  He suggests Rituxan.  Rituxan is an antibody that binds to a specific antigen (known as CD20 antigen) on the surface of B cells. B cells are a type of lymphocyte (white blood cell) that plays a role in the immune system and inflammation.  It is this reason that both of my doctors believe this will work for me.

My doctor told me that I had some ” Catastrophic Event” take place within my body and that I have not recovered from .  My body has been out of whack for four and a half years fighting itself.  This new treatment should reset my body and fingers crossed, may be the key to my survival.

Being sick, no matter how sick you are , is emotionally draining .  It really is.  For me, with no answers and my body screaming at me, I have thought I was going insane .  I don’t look sick, which makes it hard too.  On the inside , I am dying , but on the outside  (as unhappy as I am with my looks ) I don’t look sick.  This whole process has been so draining on me .

And now, I have a chance I feel, the best chance I have had yet.  Tomorrow I report at 8:30 to get my first Rituxan infusion.  They told me prepare for 6 hours.  My son will be going with me to drive me home.  I am super nervous.  I don’t know why.  I think its because I have so much riding on this. The chance to feel better.  Its crazy to think that in just 4 to 6 weeks, my nightmare could be a thing of the past.  I am desperate to feel better and I am hopeful that this could be my big chance.  It’s hard not to get my hopes up, but I need to maintain positivity.

So , wish me luck folks!

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