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
Today Dr.OZ has confessed that he has MULTIPLE SCLEROSIS!!
Does he suggest a diet that will cure him and all of us? hah.. cause thats sorta what I expect from him. #cynical #sorry Its great that he spoke out.
Okay can I start directing posts at the MS community on tumblr???
When you guys are having a flare up, do you ever wish you were a towel someone could shake dry?
I am so tired. But this restless fucking body just wants to spaz out.
I wish I were a towel.
Thats a perfect description of it really. Shake me dry or knock me out. When the symptoms of flares stay forever after till the next it gets extra frustrating. exponentially.
Day Twelve: Comic“Tremors”
#Art #Drawing #humor #MS
Was gonna queue this for tomorrow but I have a body split between full numb/tingle left leg and right arm while the rest twitches painfully. I’m really pissed I can’t take the one nighttime med that has actually helped me a reasonable amount due to the following ridiculousness:
I slept/writhed in post travel pain most of yesterday. I noticed before heading home that I only had one of my muscle relaxants left (the one that seems to help the most) and immediately called the pharmacy. So as soon as I could manage I forced myself upright and made my way the few blocks to the pharmacy. I didn’t anticipate any issues. I have 10 refills on the stuff so what can go wrong? Seems my insurance company found a way to screw that assumption.
While several of my meds were given to me in 3 month increments in the past, that stopped in the last month or two (and never included MS related meds). I don’t generally care either way as long as I get my medication. Now, however, it seems that those MS meds that were never part of the 3 mo 1 mo switch up, need to be given in 3 month supplies. Ok. Fine. Whatever. No biggie, right?
Seems that, despite the fact that I have 10 refills, more than enough for 3x 3mo fills, they will not fill them until the doctor sends a new prescription that indicates a 3 month refill. Really? is it that they think the pharmacists are bad at math? Really? What the fucking fuck!
So I went home with no meds. They faxed the doctor repeatedly. I called several times but couldn’t get ahold of anyone. Today the pharmacy is still without the new prescription and I’m still without meds. Since its the weekend this will continue till at least monday evening. ARGH.
I know the system doesn’t make sense but seriously? This is exceptionally ridiculous. I call shenanigans.
SHENANIGANS! EVERYONE GET YOUR BROOM!
Using mice (which don’t get MS the way humans do - the only thing they get is an induced autoimmune response, and without knowing the base cause(s) of MS that’s stupid) is like trying to figure out human anatomy based on a kid’s rubber baby doll.
Agreed! And I’m also getting tired of reading “was found to be XX% effective in comparison to a placebo” and never “was found to be XX% effective in comparison to the other commonly used CRAB drugs”. Small statistical differences between effectiveness in studies done against a placebo are pretty useless when making decisions about which treatment to choose.
It would be great to see some studies of effectiveness between all these meds along with side effect info so we can make decisions based on more than the fact that A was 2% more effective than nothing than B was! Guess the pharmaceutical companies wouldn’t be too interested in funding those sorts of studies.