Last night I wrote about the reality of the whole actually having an autoimmune disease/diagnosis/starting treatment thing and the difference between being told about having been misdiagnosed, being properly diagnosed, treatment, what to expect during treatment, and the hundreds of possible side effects and precautions of treatments (including having to become a germophobe) and the reality of all of that actually hitting home. It's still sinking in. And today it sank in a bit more because I had to pick up the Imuran from the pharmacy. With the first pick up comes a consult with the pharmacist in charge. Most of it is the same thing I heard from my doctor: special precautions about germs, avoiding infections, live vaccines, what to do should I become sick... but it will take about two weeks before I actually have to worry about all of that fun stuff. It's just a good practice to get into now. And of course a brief coverage of the 5 pages of warnings that come with the drug--from the possibility of it causing lymphoma, the regular lab tests, side effects, etc. (All kinds of seriously scary stuff...) Then came the 10 ton Acme cartoon safe (which he told me to read when I got home), proving just how little my doctor truly knows about me.
At the end of the precautions/warnings is a funny little warning: "Avoid sharp objects, contact sports, or any situation that you could knowingly become injured." Really? Me? A walking clusterf*ck. Contact sports are pretty easy to avoid right now because my energy and mobility aren't anywhere near what they used to be. Sharp objects? Are forks included in that? Staplers? What am I, a newborn? And there's the "any situation" part. Does my doctor realize just how truly gifted I am? I gave myself whiplash in the shower!! I tore my meniscus chucking a treat at my dog! If you can think of it, odds are, I've probably managed to find a way to hurt myself doing it. I'm just glad in 3 weeks I will have been one year sober. (Which at least takes some of the danger out it.. some, but nearly not enough) At least for a little while my mom and I had a great laugh at this warning. Even better because we still have my nephew's old baby/toddler tableware. Most of it is Winnie the Pooh. And laughed even harder at some of the memories of just how many ways I have so giftedly hurt myself. Stairs, doorjambs, tripping over my own feet, falling out of or off of furniture (when I haven't missed it entirely, stapling myself to stuff, attacked by things falling out of cabinets and closets.. the list is pretty long. Hell, I fell down my basement stairs just last week...again.
But I have been trying to stay positive. It has its moments. Until the eggsplosion. All I did was open the fridge to get my iced tea and a dozen eggs fell out. All over the bottom of the fridge, the slate floor, and my feet. Granted, today is the first day on the Imuran, but I still freaked. Normally I'd get pissed off because of the mess (which I did to a point), but raw eggs have germs and diseases--LOTS of them. And the mess was everywhere, including on me. It wasn't pretty. I know this is going to take awhile to adjust to, but I never expected this. I never expected to be that afraid of a broken raw egg, or realize how dangerous something like a paper cut might be, let alone a small cold. And it's going to be a HUGE adjustment. But at least I can say I didn't try to warn the doctor about my many accidents. And I refuse to use kiddie utensils--no matter how cute a pink, plastic Piglet knife and fork set is. Although I may not be beyond using the metal Eeyore and Piglet sets..
Learning to live life with painful and chronic illnesses, while living with someone with whom also has a chronic illness. Learning more about the darker side of medicine, finding strength I never thought I had, meeting amazing people along the way, and finding myself trying to help those same people and more like me because we're all going through the same thing. At the end of the day, it's not about what we can't do anymore, but what we CAN do.
Sweetie, my heart goes out to you! I know you have to go through the treatment and side-effects alone...no one can feel your pain but you. BUT, you're not alone. There are more people than you probably know (including me) rooting for you and sending mad Ninja-vibes your way. (And I'll tell you one thing...if I could wrap you in bubble-wrap, I would!)
ReplyDeleteThank you. And you're right; I'm amazed and awestruck at just how many people there are behind me, supporting me, and just there for me. I can't express how grateful and blessed I feel about that, or how much better I feel because of it. And you're not the only one contemplating the bubble wrap idea, but there's a serious flaw with that plan--my dog absolutely LOVES bubble wrap, so I'd be turning myself into a moving target. We can't even get those manilla bubble wrapped lined envelope/packages in the mail because she tries to steal them before we even open them! lol
Delete