How many of you wake up every morning to check your entire body for signs of your terminal illness getting more aggressive?
I’m guessing not many of my readers.
It’s one situation that makes me feel quite alone waking up to check my body for rashes and finding more each week, sometimes daily. Which is certainly disheartening, but I attempt to ignore it. The big problem is these horrid rashes have entered the realm of sleep and now interfere with my sleep patterns with horrific nightmares in which I see these clusters of hives and rashes growing. It’s quite scary and painful, especially when you have one of these intense nightmares and then you really do wake up to large new rashes on your body!
This iis my reality I live with these rashes taunting me each day like a death row patient whose innocent, they seemingly laugh in my face reminding me that my illness is in the terminal stage and that I may not live too much longer. It’s conflicting because then I see these tremendous blue cytoxan pills, 4 each day, slowly causing my health to deteriorate further along with the steroids. I’ve come to hate the Churg Strauss rashes that cover my body and I fight to rid myself of them every day. I’m hoping for remission, but my rheumatologist says that the chemotherapy is not yet effective unfortunately so I’ll continue to take those 4 blue pills of poison each day until I finally see these rashes disappearing and reach my goal of total remission.
What keeps me going? Well a quite few things actually one thing is I haven’t yet left my mark on the world , meaning I’d like to finish the 5 books I’m working on prior to my death if it has to come early. I also keep fighting for my new fiance Venus who fights hard to support me so in return I have to fight back against my disease, to not do so would be unfair to not only her but my whole family. That’s the last thing I’m fighting for my family including my loving grandparents who have supported me this entire journey, who knows how long ill be sick I know they will be there for me no matter what lies ahead! I’d mention my dog Loca who really keeps me strong and is great company but I consider her part of the family so she’s covered!
I hope the rest of you with invisible illness and chronic pain will fight with me. We can’t let pain overwhelm us every day and come to take over our lives! To enjoy life we must see all we get out of it all the joy and learning that comes from our situation regardless of the pain. No it isn’t right that any of us suffers but better me I say than those who cannot afford treatment! I wish you all a pain free day and hope that you will read my books in the future which will go far more into my philosophy and how I make it through life with more than 4 chronic illnesses. Thanks again for reading and I hope you’ll follow my articles and poetry in the future!