Chronicles of Life with Multiple Sclerosis
This time of night is when it sucks the most. Helps with pain/ spasms at bedtime so I can fall asleep semi reasonably and works well enough to reduce the times I wake up from spasms/pain in the night by half. The newest but most successful med for symptoms I’ve had and I am staring at the empty 10 refills bottle for the 5th day in a row. Talked to my doc twice today and was told it was called in/ faxed over. Pharmacy says “haven’t heard from anyone about it”
ugh! The drastic weather change is making it feel all the more desperate. I’ll be calling again 3x tomorrow. Fingers crossed.
hate the days like today, you spend the whole day on the phone trying to get appointments, meds refills, talking to collection agents etc, all to end with the feeling that you’ve accomplished nothing but worked a 10 hour day.
Guess this is the part where I say screw it! Cookies, TV and attempted rest of whatever sort presents itself. woooot
you know what pisses me off? days filled with pain and incredible cog fog that, despite extreme exhaustion, lead to nights of sitting up suddenly awake (still in pain) but somehow clear enough to be pensive in the grand life plan sorta way. More so (and frequently), that sudden awake and faux clarity that leads to internal attempts to form coherent responses to questions and comments that happend hours ago (days ago?). You were too foggy to really respond but managed to keep in your brain for just this moment. Damn you body. Can’t you use that energy for good? Occasionally when I’m upright? or not when on pain meds that make speaking even harder? please?
have been so painful lately, huge lumpy reactions that hurt and itch for weeks after if not forever. When I was on it before I got bad reactions but not quite this bad.. I got used to doing them.. now I am sitting infront of the damn autoinjector wincing before I even take the cap off. Add the weather induced horrifying pain? I am not a happy camper right now. ::whineyface::
Ugh. So I’ve been without internet for a week now (thanks for sucking RCN). In general I feel like my health has been declining but my attempts to fight the pain and fatigue have been increasing so I guess Its a wash.
Today I got lots of results from the crap load of tests I’m required to complete before I can start Gylenia. All but the dermatologist has been done so I figured I’d be taking the new meds by the end of the month. Well.. that was wishful thinking. Turns out that I never did get exposed to the chicken pox. I knew that about myself but most docs looked at me and sorta laughed and said “I’m sure you were exposed but you don’t remember” or “I’m sure you had a really mild case and didn’t know what it was”. Well they were all wrong so now I need to get vaccinated. Woohoo.
So the nurse at the clinic very softly (and in her kindest social worker voice) told me that its not just a simple vaccine, I’ll get it this week if I’m lucky then wait a month then get another shot then wait another month then they will decide when to start me on the meds. hah!
Yep, that pushes back my start date about 3 months while curascript kindly made sure I received my first month of meds this week.. apparently so I could pay them the copay and stare at the box. The doc says I should probably get a solu-medrol infusion since I feel like I’m on the verge of a flare up (pain and fatigue and cog - fog wise). But since im getting vaccinated I’ll have to wait till they figure out when I can get it so that it doesn’t interfere with the vaccine. Also there is the fact that I’ll likely get sick from the damn shots and I the person I hang out with the most is both immobile and has never had the chicken pox so I can’t expose her. blerg.
Point of all this? I feel like shit and I’m starting to wonder if the medication is even worth all this crap. /negativity
oh and P.S. I may not have internet but I’ve been meticulously typing this post out on my old ipad for the last 6 hours so that I can post it using a data plan I can’t afford to pay for. YAY!!!
Ha! Or Hug a chronically ill person, non condescendingly, that got sick before she/he established any lasting relationship and thus, this one day, hopes that the chronic pain/fatigue/ etc will allow them to sleep/toss and turn/ and generally be distracted enough by their crappy illness to forget its valentines day.
Hoping that forgetting this halmark holiday with an increase in the constant shitty feeling every day brings will allow them (us) to avoid the added depression/loneliness that valentines day will inevitably induce, in turn increasing the physical and mental pain to that level that you’d hoped would happen earlier because at least then you could have avoided that pathetic feeling while your try to walk the 10 ft to the bathroom from your bed at 7pm at night.
lets occupy the insurance companies! oh wait.. we can’t.. we’re too busy in MRI machines and on infusion tables (that we are worrying about getting billed for later) to occupy anything.
Thanks for refusing to pay for the two MRIs my doctor ordered. I didn’t wanna know if there was a fistula pressing against my spine, anyway.
P.S. JK fuck you guys
You know that full body ache that makes you writhe around because just laying still makes it feel more concentrated? I’m laying here fidgeting. I can feel every muscle, bone, joint, tendon in my body right now and they ache intensely. Its spread to my whole body when earlier it was just my back. I don’t get this type of pain that often, more electrocution like feelings all over my body. I had a busy weekend, so I figured the fatigue would be pretty bad today, which it was, but Its strange because for once I had very little vision graying. Almost none. That is the almost daily indicator MS sends me to “shut it down” . Not today I guess.. today this body ache is everywhere and in the last few hours its gotten really bad (and I have been told by many that my pain tolerance is pretty darn high). Its half small contractions in the muscles and half just a solid ache everywhere. My fingers hurt. My legs hurt. My back is throbbing. Way worse than the last few times this has happened. All I have to take for it is Advil. heh. That is not really helpful though I did take it. Blah. I guess there isn’t any purpose to this post but to vent. I tried to spend the day resting so I could recover from the weekend (sounds like I was wild and crazy but really I was just cat sitting heh). Instead of preventing further craptasticness I’ve gotten worse. I can’t afford to have another day with absolutely no productivity at all. I have more SSI forms, insurance companies to call, etc etc.. but if this keeps getting worse I’m never going to sleep and I’ll just continue to fall behind, get stressed about it, push myself too hard, and end up right back where I am at the moment. Failboat. Thanks MS, for never letting me forget. hah.