one step forward, two steps back?

It’s been a rough one. Its crazy to me how one minor alter in my daily regimen can throw EVERYTHING off. I tried to wean off the Benadryl pump, VERY VERY SLOWLY…I began noticing symptoms when we reached 1mg/hr. less that I had been receiving. After I was down about 1.5mg, I had to go back to full dose and reinstall the bolus pump for flares.

I am on SUTENT a chemotherapy drug that has a few side effects. I am trying my best to manage through them. I had a high fever for a few days and my PICC line in my arm was incredibly sore and burning. I went to ER to make sure I didn’t have some sort of infection. 3 days of hospitalization later, I have a new PICC and am more miserable now than before.

I believe my fevers are a side effect of the chemo. While my blood work is a little off it was trending in the right direction when I was released. The issue is that the new picc they put in had to be put in the vein next-door to the one they used the first two times. The veins that had been used has a lot of scar tissue which was probably causing the pain…

The new picc I was sent home with was bleeding everywhere. Joy. My home nurse is amazing and came over right away yesterday to put pressure coverings on it and I woke up this morning without any crime scene looking sheets. HURRAH. It hurts. Bad. My right arm is pretty much completely useless right now. When I move it, it burns and feels literally like I am holding a hot iron to my arm between my elbow and my armpit.

I spoke with my doc’s nurses yesterday and they are working on getting time to put in a port instead of a picc. The problem…its highly possible that I am allergic to the plastic the PICC is made of…issue being, the port will be made out of the same plastic type.

My life is so complicated its ridiculous. I just wish I could press a pause button and be healthy for one day, maybe even just 12 hours so I could remember what its like.

I was supposed to fly and spend the week at my parents place in Florida. Obviously I am not stable enough. I spent the last 5 days in bed with very little sitting up and zero walking which has taken any of the conditioning I had built up away. I am like a weak baby giraffe. My legs are like Jell-O and I get out of breath just rollin to the bathroom.

I can’t be mad about life, I can let myself be sad for a few moments and then I gotta get tough and FIGHT through. I am sure it would be SO MUCH better if I could take antibiotics or pain medicine, but I cant.

When I am sick like this I separate my body from myself. Elle’s body is going through some tough shit, but Elle is ok! I will make it through this, and I will come out the other end stronger and wiser!

I so badly wanted to be the first patient that could wean off the pump…but turns out, my body really needs it. The pump doesn’t bother me that much, it’s the PICC that does. It’s a hard thing to always remember you have a pouch connected.

My mommy is in Florida now for the rest of the winter and my Grammy can’t quite drive again I am here, fighting with the support of Joshy his momma and his aunties.

I am woman hear me roar…but not like a lion, more like a freshly born kitten, the runt, who is struggling. LOL

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