Chronicles of Life with Multiple Sclerosis
What did they say?! Is it just your meds trying to make a crawly snake with its casing and the humidity?
thanks aetna rx home delivery- now i know why the bottle kept spilling tiny pellets aka the contents of this capsule #spoonie #spoonieprobs #chronicillnessproblems
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!
Its been a bit of a rough patch lately, to say the least. I’ve been writing less and responding more on this blog out of complete lack of energy, what I’ve dubbed ‘Cog Fog’, and lots of life stress that just makes it all worse.
As those of you in MA or major medical research cities, getting an appointment with a good doc that takes your insurance is rough. SO you take what you can get. I didn’t tolerate that with my neurologist (though it took a while) because it was clear I was talking to a brick wall. In the current case my therapist (required to see in order to get my required psych meds that the Neuro can’t prescribe as per insurance policy … not that I don’t agree but the complexity of that is not for a waiting for sleeping pill to work post.) Anyway. Point is I don’t have much faith in my mental health professionals and haven’t from the start. My therapist is a sweet lady that has a lot of interest in art and things I do… but seems more interested in being my bestie than anything else. I’m in charge of delivering her coffee every session, she emails me at home asking for pictures of my tortoise dressed up and sends me her art work.. all of which makes me, internal vault girl, essentially going to these sessions out of requirement. urn
Today, however, I kept thinking how rough things have been physically and mentally lately. How much I could use a real session. SO I got there and told myself I wasn’t going to let her get distracted by pets or art talk or anything else.. I was going to really talk about stuff.. see if I could make this what its supposed to be the one time I really felt like I need it.
It started out ok.. I was talking.. she was rambling a little back but would return to listening.. yay? well I was really trying to force myself to talk about things when she suddenly stopped me.. looked me straight in the eye and said “My god you must be so lonely! Sitting alone in pain.. You.. Your life makes me so sad” and then she started sobbing. SOBBING. So I had to get up and get her tissues.
So, considering I really needed some help (and coming from me the detrimentally independent person) IT really managed to push me back down that hill of I can move beyond these moments.. and made me wanna throw rocks everywhere.
sucks cause going to the appointment today was my attempt at being proactive and not wallowing or focusing on pain and what not. Not giving up though. My day veryIn fact, my day when I went to pick up a toaster oven from a very generous woman on Freecycle in my area. She was so kind and interesting and (unfortunately really) could relate to this particular auto immune disease, Karma? Kismet? Coincidence? Whatever it was meeting her made me feel a bit like life was giving me a kick and not allowing me to spend my day focusing on my earlier experience. It reminded me that others understand, have lived through more and less and just lived and its all worth learning from. And she has created some fantastic craft pieces that I really love. Perhaps a pic tomorrow. Sleep specialist is going to be really pissed at me since I was supposed to be technology free by midnight. oops..
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!!!
Too fatigued to work a full week is what I said. Do you have MS? I’d be sad about you being a dickwad but you obviously know nothing about me or MY MS other than what you see on my blog.
A lot had changed since I wrote that and some gutless anonymous prick is not going to make me feel any more bad about the fact that I can’t do the career I liked and studied and payed for anymore.
I don’t see how it effects you in the slightest either. Do you get money if I get a “real job”? Would your dick get hard (alternatively, ‘get a wetty’) if you thought I actually got all upset over what you posted.
Perhaps YOU should do something PRODUCTIVE and POSITIVE with the little time you have left after working all those hours at your REAL JOB, hey?
ok wait. Did someone actually write this to you? JESUS. Fuck them do what you need to do and define yourself how you want to define yourself. MS sucks the life out of us in a way that none of the people that would write something like that can even dream of. ugh. sorry. got annoyed on your behalf and on my own since I’ve been internalizing some well meaning comments by my doctor that don’t come CLOSE to this bullshit but in my head sorta feel that way. heh.
Damn some people need to get a life.
I’ve been so incredibly exhausted all week, like sleep 24/7 can’t move my body parts fatigued, but I’m still awake at 5:18am. I took my baclofen, took a xanax a while ago. I’m reasonably sure that by the time I fall asleep Im going to have to immediately wake back up and drive myself to the infusion center