Chronicles of Life with Multiple Sclerosis
I’m at a cancer hospital with my aunt
She has Multiple Sclerosis and comes here once a month to get an infusion to manage it.
And it’s seriously fucking miserable here.
All around me people are getting pumped full of chemicals and I swear I can smell the sickness in the air.
Everyone is smiling and trying to be positive but I can tell that they’re sad
So so sad
I feel like I’m choking
My head hurts
Some one please please please talk to me I’m gonna throw up or something oh my god
yep. I could never be those positive people. Why I half wanted to go alone half didn’t.. cause it is pretty damn depressing in that infusion center.
I’m feeling more positive lately (doesn’t say too much from the crazy you saw last month) I have about 5 different tests scheduled and a few more in the works before I’ll actually get to start Gilenya. BUT Im also in a crap load more pain and incredibly exhausted since being off the Tysabri for over a month now. I’ve been trying to hide it a bit, push myself and push myself to get out there and do things, focus on other people. I’ve actually been pretty productive lately but it freaking HURTS. hurts. I’m afraid I may collapse if I continue this way.. or maybe its the push I need to be productive? ya know.. till I pass out on the side walk entrance to my home because I was too tired to make it inside? yeah. Maybe thats what will happen. :::whine whine zzzzZ:::::
So, I am currently not taking MS drugs. It’s been a while. I haven’t been taking any since last year. This continues as I work my way toward starting Gilenya. I felt really good (even better) since stopping my previous MS drug, Rebif.However, I feel constantly on edge about have a flare-up or full attack. I have no safety net.So I am taking it really easy. Staying inside in the cool air conditioning. Not doing anything too physical. Getting lots of rest.Boring. April 24th can’t come soon enough.
i’m in the same place. Working my way towards Gilenya. I have a gazillion tests scheduled for this month and I am also feeling like I have no safety net.. Rebif was the worse medication I’ve ever been on. The side effects were so bad I wanted to die rather than keep going on it. Copaxone was easier, but the flare ups continued while I was on it. I had such high hopes for tysabri, but I’m allergic (of course). So now I’m not on any meds, worried about what my doc things I should or shouldn’t feel, and trying to figure out how I’m going to make it to all my tests when I feel like I should definitely not be driving. Sucks yeah? yeah. You’ve got it right there. Stay cool (easy for me in MA), get lots of rest, and sit out of too much activity. MS is so much fun. Good luck to you! maybe we can high five each other when we finally start gilenya.
So I’m on a bit of a “wordiness hiatus” due to some serious “last week before infusion” fatigue. I’m in shit load of pain and so exhausted. I’m sure you all know all about it prob more than I do. Anyway, now that I’m stopping tysabri I’m not sure how this will work out for me. I will likely not be on any meds for at least a month or 2 while I get the gazillion tests required for Gylenia and wait for insurance to approve the medication. The fatigue is usually helped by the next infusion but now I’m wondering if maybe I’ll just have to deal? dunno. Fingers crossed and all that.
SO, I just thought I’d stop in and say hi and share this sculpture I’ve been working on (semi related to the project I’ve been working on but not directly… ) The piece is about 1/3 of the way to some sort of completion but its a big one and is Resin based so it smells to all hell.. have to do it outside when semi warm so as to not asphyxiate myself and/or my landlord & fam. Anyway, I’ll send some more pics as I just added a polishing layer to the top and am working on a mold for the second go (cause you’re so interested right? right. ) I’d share the main project but I’d like to wait till I have something semi complete to share. So this here is a side project, half head with personal MRI prints, cast in Polyester Resin. Its not whole and is cracked, but thats sorta the point.
so I guess this was pretty wordy though I said I was on a hiatus, so uh.. sorry I never shut up once I start :o
ugh. You know, I was getting back to not obsessing being in control and thinking as positive as a cynic like me can for my future. I’ve been throwing myself into this installation project I’m working on and was back to that today trying to let go of all the crazy thoughts thanks to all of your support.
WELL. my neurologist’s assistant just called to tell me my allergy test in regards to Tysabri is positive and they want me off the medication. AHHHHHARrrgh. I’m so not happy with this. First they told me they could pre medicate me and I could continue to take the meds (when they were taking my blood for the tests) now they say I need to stop taking it and try something else.
Damnit I’ve tried the interferons and the ones that didn’t make me completely incapacitated from side effects didn’t stop the disease from progressing with new symptoms. My only option at this point other than going back to copaxone (on which I was still getting new symptoms) is Gylenia. Im doing more research (and had done it before but decided against it for many reasons) and I just am not sure how I’ll react to this one.
I’m so so frustrated. I had a story to tell you all about tripping and falling and wetting myself like a little baby the other day when trying to stay off the adderall like my doc had said but now I don’t even care about that. This is the only med that has given me a few good weeks of cognition and no new symptoms (though still maintaining the old ones) which was huge for me. I thought I was on a path to stabilizing a bit.
Ugh. I know I’m just frustrated and things could be much much worse but I am having that moment where I sorta wanna cry and sit on the floor and ask the air why i can’t catch a break. thats silly I know, I’ve had lots of breaks along the way (ssi, friends that are awesome, all of you) but right now I feel like I was kicked in the stomach again. Blah.
I see many of you are dealing with shitty things too. I’m sorry I’m too self absorbed to send each of you my good thoughts directly but know that they are there and that I’m just gonna embrace my internal hater right now cause well.. that gets me by.
Been feeling really foggy and in pain for a while. Hoped todays tysabri infusion would get me back on track. Well number 4 didn’t go so well. 5 min after the infusion my bp dropped to something ridiculous, started to black out, got some emergency fluids and had to lay around for a long time. Home now, massive headache, feeling like crap, and waiting to find out if I’m allergic to Tysabri. I guess having an allergy to the medication doesn’t mean you have to stop taking it you just have to pre medicate? in any case, MS ran me over today and its making it difficult to do much, even enjoy 30 rock and parks and rec which (as I’m sure you all know from previous babbles) are the highlights of my week. heh. yay MS awareness month! maybe MS wasn’t sure I was aware enough.. if so, I say “I get it MS. I get it. thanks. I am FULLY aware.”
started having really vivid dreams/nightmares? I have had the most vivid nightmares for the last month or so and the only thing that I can think of thats causing it (other than general crazy) is the Tysabri and/or Tysabri and some of my psych meds interacting. I am off the ambien so I know its not that. I know my psychiatrist has no clue about MS or any of the meds I’m taking and doesn’t seem to do any checking about interactions. I’ve done some myself and all I’ve found is that some people on Tysabri have reported mood issues and nightmares. So I’m wondering…
I know I need a new “head doctor” if you will, but insurance makes switching hard. Some of my dreams seemed like very vivid stress dreams while others were just horrible nightmares. I had one (don’t laugh cause it was actually really traumatic) that involved an anonymous person’s pet meeting Zoya (my tortoise) and biting her head off in an incredibly vivid and gory way. It was horrible.
The damn dreams aren’t making my general mental health better, nor my ability to deal with fatigue any easier. So far I really feel like the infusions are 1000 times better than the daily injections overall, but this aspect is unsettling. Not to mention, the mood issues it either comes with or induces.
The idea of switching anti depressants at this point is pretty horrifying. I’m on so many meds that weening off of something that (I know very well) takes a very long time and causes lots of distress, only to try something new that will take ages to take effect and might be worse than what I’m now.. it just seems like its not an option.
Anyway, I did talk to my neuro about this (or his research assistant anyway) and he’s gonna get back to me this week. So we’ll see… just thought I’d ask…
anyone else had this experience
I remember when I was growing up, how I used to envy all those swank couples in movies who ate chinese food out of boxes with chopsticks. These days, if you are out with friends in metropolitan cities, you DO NOT want to be the person who asks for the fork when eating chinese or Japanese (or Thai, etc).
For the past several years, I drank champagne and ate dim sum or sushi with chopsticks….but of course!
However, at times, relapse times, my hands would feel a little too weak to pick up bigger pieces, so I might have to say my apologies, and first chop my food into smaller pieces. But I could manage….I wouldn’t need to resort to….a fork.
until this week….
There I was, having a lovely dim sum lunch with my boss. As soon as I picked up the chopsticks, I knew something was wrong. I am in a relapse, so I figured, I would just need to do my chopping trick. But no. No no no. That was not the case.
I couldn’t lift. I couldn’t grab. Honey, I couldn’t even poke! It was a nightmare. I tried to talk more to distract him from the fact that my plate was still empty five minutes after the food arrived. All of my dumplings and parcels were still in their bamboo!
I felt like running. One of the pieces was huge and super greasy. It was a fried prawn. I picked it up with my hand and said, “you don’t mind me eating it like this, do you?”
“Not at all,” he answered, carrying on the conversation.
Well, another five minutes, and all I had eaten was one prawn. Things were not going well. I had to come clean.
“My hands aren’t working today,” I announced, as I called over our server. “It’s an MS thing.”
“May I have a fork please?”
I wondered did they even have forks. They probably had a set of 12 for the whole restaurant. For those few who carried the shame….
But in the end, does anyone really give a f….ork? I doubt it.