It’s been a while…I have multiple unpublished drafts because my brain has been so scattered that I don’t always know if what I want to say is making any damn sense. I have recently gotten news from the doctor – lesions have progressed since October – oh gosh! I swear I could have made the same conclusion without a super expensive MRI to tell me, but ya know, doctors and science and shenanigans….I know it’s best to have the documentation to back up my claims, it’s a necessity even if its a pain in the ass sometimes.
So yesterday I saw my Alice in Wonderland doctor…and he says that it’s a go for me to start this new treatment. It’s called Lemtrada; I am not ignorant to the details of the risks and outcomes from this drug and I am fully ready to jump feet first. Every other drug that I have tried to make me ‘normal’ has always had a ridiculous amount of fear that came with it. I do not feel that with this drug; maybe it is because I know that I feel like shit daily now and am praying for a miracle. But maybe it’s a sign that this will be the medication that will work. I asked the doctor if he would be my regular neuro since the other one has a lack of responsibility when it comes to paperwork and shit…he said yes of course, we don’t want you to see anyone else…..so that man got a hug because he totally made my day…for Star Wars fans the Fourth was with me yesterday undoubtably.
In the past few months it has been extremely difficult to remain optimistic because every aspect of my life is literally up in the air; but…I am strong enough to fight this disease and I will do whatever I can to get the best quality of life. This does not mean that I am dying or anything like that – Hell’s not ready for me yet….but it does mean that I want to be able to live, and I will still get up, dust myself off, and keep moving forward. I don’t know another way, and way to stubborn to just quit.
So a few more tests, a consult with the place for the infusion of the drug, whole bunches of paperwork and whatnot, but really, if this drug is all that it claims, even if I get a little bit of normalcy I’d be grateful. My optimism is also my enemy because I am so hopeful for a miracle; but there’s that little bitch in my head (she’s my bitch) saying, it may not work! She’s right, it might now, but I won’t know until I try.
I can’t eat, I can hardly sleep. Moving in any other speed than slow or neutral is a special occasion. I’ve lost nearly 45 pounds – I AM NOT COMPLAINING – please, I’ve always been a bigger girl; but damn…it’s coming off so fast that when I brought this to my doctor she says it’s expected – WTF! I didn’t realize rapid weight loss was to be expected – but ya it’s cool. I’m in smaller pants now, and tops.
I am not working because the focus it would take to do that is exhausting just to think about it; doc has me out until 8/1. I can’t change this disease; I can’t make it like me or sit in a time out because I have shit to do. I can change my attitude even if I’ll forever be the sarcastic optimist; and I can change my hair color, cause well, nothing makes me feel better than a brand new do….