My medical calendar just got so full that it’s overwhelming me and I think I need to write it out. Vent. Rant. Who knows, but I definitely need an outlet. I had my first of several weekly lab appointments to draw my blood to monitor for damage caused by Methotrexate, the new medication that I am on for my Scleroderma. I have severe, extreme medical anxiety and even the simplest of appointments can seem to be too much for me to handle. This is not an occasional occurrence in my life. This is my reality every single time that I have to enter a medical facility for any reason whatsoever, and today I had to face my fear and get these labs done. I was hyperventilating for most of the drive to my appointment, and I don’t even know why. This was just a routine lab appointment, but I had myself all worked up over it. It didn’t help that the phlebotomist kind of had an attitude with me about my special needs. She seemed like she didn’t want Michael in there with me, but I left her no choice. I’m like a little kid at the doctor’s office. I’m literally scared to death when I’m there and I hate to be touched at all, so that makes me very apprehensive as well. The lady kind of scoffed at me when I tried to explain that I have severe anxiety. This was not the lab that I usually go to and I’m not sure that I want to continue using that same one.
My liver doctor requested a very strict schedule for my labs. They want weekly labs for four weeks, then every two weeks for two months, then monthly after that. It’s terrifying to know that I have to take a medication that will almost certainly cause damage in order to slow my disease down. If I don’t get this under control, my life could really be on the line. I’m lucky as far as the Scleroderma is concerned because I don’t yet have much lung involvement. Other than the occasion episode of shortness of breath, I don’t have much trouble breathing. My rheumatologist was impressed with my Pulmonary Function Test results from earlier this year, so that eases my worries just a bit.
Michael has had his hands more than full this past week with all of my issues coming to a head. The news that the Scleroderma is progressing was hard on both of us. It sent me into a spiral that I wasn’t ready for and I’m still trying to recover from it all. I’ve been crying, angry, sad, angry again. I’ve just been all over the place emotionally. I don’t know how Michael manages to keep me all together these days when the news was shocking to both of us. He’s had to keep his emotions about it to himself just so that he could help me get through it all. I don’t really think that’s fair, either, but that’s a whole different story. I’ve been flipping out all week over this news. I’ve been so alone in all of this. With the exception of Michael and my Bestie, nobody is there for me. My own family hardly speaks to me, so I don’t even bother to reach out anymore.
Dying is lonely and it sucks when the process of dying starts when you’re still so young. Hardly seems fair when I think about it. I had so many hopes and dreams, plans and goals. When I got sick, I had just gotten into what I thought at the time was the best health of my life. Little did I know that Scleroderma was ticking away inside of me, just waiting for me to notice something wasn’t right. That sign came in the form of my first Raynaud’s attack. My body was literally screaming at me to notice something was off, and I ignored it for well over a year. Finally, my mother convinced me to go to the doctor about it and when I did, I wished I hadn’t. Everything has just been a downward spiral since that moment and I don’t know if I’ll fully recover from the stress of it all.