Some say writing is difficult, I say it’s simplistic if you have a good story to tell. The days I don’t enjoy my writing often come from other blog prompts, searching for ideas rapidly, or just refuting an article a fellow blogger wrote to start an educational conversation. However creativity is the key to happiness and I’ve had a lot to tell lately. Life has taken some wild twists and turns but chronicling all of that here is the joy of the whole process so you can see how each day goes whether I’m quite ill or I make it outside for a while! Anything is an achievement as a spoon heck taking a shower myself and getting dressed without falling is a huge success for me. That may be a normal routine for other but as it’s something I struggle with I feel a warm bit of pride on the days I do manage to do it myself without any injuries!
Today was rather dreary and so is tonight I am afraid. I got a blog post written earlier which I hope you all enjoyed and typed up a small portion of another chapter of my book I’m working on about life with an invisible illness. Other than that my breathing has gotten worse, I’m on 2 chemotherapy drugs, Cellcept every day and Rituximab every 6 months via infusion. Oddly enough the Cellcept is killing me figuratively that is. It has broken me down worse than any chemotherapy drug I’ve ever had my hands on even Cytoxan and that on was by far the worst and ended up in a bladder bleed which had to be removed then cauterized. I thought this drug was supposed to be easier on the body and we’re slowly tapering up I’m only at half the dose I need to be so I am frightened to be at 2000mg a day of this stuff…this poison. Not to mention my voice is hoarse/non-existant, and my breathing has taken a turn for the worst. I use my nebulizer daily now when we’d never even taken it out prior to this past month or so. I feel as if I am slowly but surely losing my battle and I am fighting that mentality with all I’ve got in life. I am on very high dose prednisone again, and lastly I literally feel as if I’m dying. It really bothers me lately being in constant full bodied pain and having such issues breathing I never feel comfortable anymore and every single day I have to make the choice of whether to go to the emergency room or not. Today in fact I laid all day on the couch and rolled around in pain until I’d fall asleep. I just wish I had a break from all of this pain even a few hours or minutes would be much appreciated at this point.
I seriously think things are going downhill here but I’m trying to write more and think less about my illness. The issue with that is my life is engulfed by my illnesses, The true rub here lies in the fact that my book, my blog, my advocacy work it all involves one or more of my illnesses it is a problem I’ve been trying to solve but my passion for all these things takes away the few spoons I have remaining each and every day. If you don’t understand that statement look up Spoon Theory. I honestly think my passion for advocacy and helping others has gotten in the way of my own happiness. I can only hope that soon I will find a way to maintain my happiness again and escape this depression that has befallen me. Right now my lovely 2 year old dog Loca, a very special Wheaten Terrier, is helping me to forget all the pain and anger with her loving fuzzy little body lying next to mine.