It's not like my life has been anything close to normal lately, but since Thursday afternoon, it seems everything has gone completely haywire at a time I need it to calm down. I'm trying to figure out what exactly my diagnosis of MCTD is, what it means for me, and how it's going to affect my life. It's also on hold until more lab test results come back to let me know which treatment I start--which hopefully will also be the first and only treatment I'm on because it will work without a million God awful side effects. Or at least work the way it's supposed to (whatever that's supposed to mean.. See my point about the needing calm?) My anxiety is probably about a 20 right now and while one person very close to me had a nasty reaction (I found out they were just having a bad day, they were relieved and scared for me and the response came across the wrong way and now everything is okay), my mother thinks I'm obsessing (which I kind of am because I'm not finding very much info on MCTD and what I am tells me almost nothing, and what I am finding is all very negative and extremely vague--re: "we just don't know besides it's definitely an autoimmune disease based on solid empirical data." And I'm an accidental health awareness activist, so that's what I do, so how effective can I be if I don't know a damn thing about the disease I have besides what it's called? Nevermind the pages of warning labels that come with the treatments... which include the high level of cancer rates. Yep. CANCER! Including Lymphoma. Seriously. I was just tested for that. Now I'm going to be put on medication that can cause the very disease I was suspected of having and I'm not allowed to worry about? Not to mention, well, this is my life. And I have a disease that no one really knows much about, or what the hell these treatments are going to do, whether or not my pain is going to improve, my mobility is going to improve, but the one thing they DO know is the treatment is going to slow the progression of this "orphan" disease. So yes, I am obsessing a bit. Because it's safe to assume that life as I know it is over. And I have to figure out how to start over again. And take things a day at a time. And I'm 32. At that age, it's scary. There's a lot of unanswered questions that go with that and a lot of questions, too.
So yeah, things need to be a bit calm. Except they're not. My car, Blue, is throwing tantrums and pitching fits. My mom got a newer car not too long ago. It's a piece of crap in my opinion and I'm fairly certain the previous owner was a female.. or a male who purposely went out of his way to dent every single panel (including the roof) of the car and succeeded. Including the sideview mirrors. But my guess is just a horrible female driver (the Slutgers parking stickers are a clue). And it couldn't get out of it's way if it tried, it's so slow. But Blue seems intimidated by the new car and I had to make her feel better and made sure that she wasn't being replaced, it was mom's, and the only time I would drive the new POS was if Blue was in the shop for more than a day for repairs. Then promised Blue a car wash and some overdue maintenance. That's when things kinda went sour. On the way home, the trans went into "limp mode" stuck into 3rd gear on a major highway. And the ABS and traction control lights went on. Of course the garage I pulled into didn't have the program to scan the OBD system (Seems German cars need special computer programs..) The trans fixed itself, and I was able to manually shift her home (LOVE that Tiptronic trans!), but I still don't have ABS or traction control...So I found an OBD scanner and came up with a solenoid code that might go away. Start simple, right? Check the fuses... the 2 might run on the same circuit. EXCEPT THE LABEL IS IN GERMAN!!!! Now I'm just irritated and waging war against the damn car.. the maintenance can wait and it'll get washed in the rain. And Germany? They can go pound salt. They build a car for Americans and label shit in German. The jack? It's in 4 parts, the instructions are also in German with no pictures. (Found that out when I got a flat tire last year.. put it together and prayed I didn't die.)
And then there's Darwin.. my hamster. She's my new roommate until the heatwave breaks. I cleaned her cage out and gave her extra treats, since she hates it when I clean her cage and toss her food stashes. I'm on the phone last night, talking to an old friend and watching her running full speed in her wheel until she purposely lets herself go, flinging herself backwards into a carefully placed pile of fluff. Quite ingenious, actually.. the way a kid would throw herself into a ball pit or something. (And amusing to watch) Occasionally, she would mistime the jump and slam into the side of the cage, but she's a resilient little rodent.. I've seen her survive harder falls before. After 2 hours of this, she went over to the water bottle for a bit, the food dish, her treat dish, make her way to the top of her cage, and just flop over on her side, eyes closed, not moving. I called her name a few times. Nothing. I put the phone down, opened the cage, poked her. Nothing. My hamster just dropped dead. Just like that. I picked the phone back up, not sure what to do. She's about 17 months old, I have no idea how old they live, but she was just playing. Was it heat stroke? Did she hurt herself on the cage? What do I do? I've never seen a pet drop dead like that.. My friend is trying to keep me calm when all of a sudden she gets back up and runs back down to her wheel and begins the process again. I fell asleep after watching her repeat this process for 4 hours. What the hell kind of hamster did I adopt? She's playing dead, my dog spends most of the day hiding in the closet, my car is throwing temper tantrums... Oh, and I have a 600lb bear stalking me. I couldn't make this up if I tried...Screw the Xanax... I need Valium.
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.
Like you, I thought everything would come into focus after I got a diagnosis. I was SO wrong! It just went even MORE haywire...there was just a name to attach to the insanity. *sigh*
ReplyDeleteI expected insanity for a little while after a diagnosis, but on my end while I figured everything out.. like school, adjusting to treatments, adjusting to the fact that yes, it has a name (although mine kind of doesn't.. more like a diagnostic code and an "unclassified group of stuff").. but I still haven't processed a damn thing because everything else has gone haywire and insane! Which scares me.. I know none of this has really hit me yet since the lab tests about the treatments are still out and there's still a TON of questions unanswered and I'm in the middle of dealing with chaos on every other front.
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