Chronicles of Life with Multiple Sclerosis
and I stayed awake to watch Jimmy Fallon.. which I wanted to watch but.. I’ve been in SUCH pain all day.. that I think it was that half hour of relief that had me up and watching and tweeting.. but now.. i want to pass out and hope the duller ache stays that way so I get at least 5 hours of sleep tonight and wake up from rest not from serious pain. I won’t bet on that happening.
A YEAR IN PICTURES: DAY 109
This was my hope… and it is fading. All is closing in on me. I had hoped the upping of this medication would bring me relief. But, I just seem to be getting worse. I really do not want a Baclofen pump, but I know that will be the topic of conversation on my next visit with the neurologist.
I’ve made a necklace with a baclofen pendant. So when it still hurts despite the meds I can wear it with a weird sense of pride/irony/dilusionalhopeitwillabosrbsomehow
oh man. that sucks! but hey, I know wanting to stop something so desperately that you just do it without thinking about anything but that. Glad you’re ok!
Sometimes I amaze myself at my own stupidity.
Boys and girls, don’t be stupid. Don’t do stupid things like smoke, or do drugs. Or worst yet, be like me and stop doing drugs.
No, it’s not what you think. I am referring to prescription drugs.
For a while now I have suspected my medication for my muscle spasms has only been making it worse. My new neuro, in an attempt to get them under control increased my dosage, which resulted in more pain.
So last night I decided to stop the medication. BIG MISTAKE! The thing is, I knew better. I am not a dumb person, just a stupid one when I am in pain. I have this drug in my body that I feel is poisoning me and I want it out. I know I should taper it down over a 3-4 week period, but to do that would mean continuing to put that poison into my body. I wanted it out and I wanted it out now, so I stopped cold turkey.
As I said. BIG MISTAKE!
Oh my, you look worried. No, no, don’t worry, I am ok. I did not die, I promise. But I did have more than my fair share of hallucinations. I accused everyone in my household of baking chocolate chip cookies. I was up looking for them, I could smell them baking. I later realized it was an hallucination based on the absence of said cookies and the presence to a lot of weird visual hallucinations.
Hallucinations are somewhat benign. At least in comparison to the other withdrawal symptoms, which include…
- High fever
- Increased, “rebound” spasticity
- Rapid breakdown of muscle tissue (which can be quite dangerous)
- Organ failure
- Low blood pressure
- Loss of life.
I kinda take issue with a few of these, including loss of life. Seems kinda permanent to me.
The thing that bother me is, what is the drug doing to my body that stopping it wreaks this much havoc?
I am not anti-medication. I believe they have a place. But I don’t trust drug companies and feel they hide information from us. I feel they keep medicine from us that might actually help more, but is less profitable. No, I do not trust drug companies.
But fact is we need them.
Fact is, we get sick, we get illnesses and we are required to take medicines to be able to function on a daily basis. Sometimes the side effects are very bad, but the effect of not taking it is even worse. And with muscle spasms from MS, we are limited in what we can take. We don’t get the feel good muscle relaxers. Nope we get the drugs that make you feel like crap.
So, here I am. Hallucinating, heart racing, and freezing to death. 3 of the withdrawal symptoms. The question is where would it stop?
So, I am back on the medication. I cannot risk organ failure, seizures, or that pesky loss of death thing.
So, I will continue putting this poison in my body.
I would like to state to those taking baclofen, if it works for you, great. DO NOT take my comments about it being poison seriously. This is just the ranting of a woman on the edge. A woman in so much pain she is losing her mind.
Fact is, it may be helping and I am just progressively getting worse. But I am finding my hands won’t shut and open properly and pain is wracking my body. Maybe the drug is helping me, maybe I would be worse off if I wasn’t on it.
My stopping the medication was merely a way to test my theory out. I just went about it wrong.
So, I am back on the medication. Considering tapering down. We will see. But it must be a slow process.
And now, I have taken my medicine, and I am going to go sleep a while. I am exhausted from searching the house last night for those fresh-baked, chocolate chip cookies.
I stopped taking ambien a few weeks ago. My psychiatrist and Neuro don’t really communicate at all and he (the psychiatrist) doesn’t see to know much about MS medication. I started having those Dateline NBC special type side effects to the ambien. Not that it was continuing to be the most effective but it helped some with the insomnia. The only thing I could come up with is that my baclofen and ambien were combining to make a crazy person that decides to suddenly clean at 1am and then leaves the sink on and floods half her apartment without any memory of it later. It was starting to worry me since I’m hoping not to die driving my car by accident in the middle of the night or starting a fire or something equally ridiculous that would leave me fodder for some obnoxious news article “Girl dies while sleep cooking grilled cheese with fat free Kraft cheese slices, it wouldn’t have even tasted good had she made it”. hah.
Anyway, Psychiatrist told me to take a mg of Xanax and night to see if that worked, well, its not really. I’m still sleep eating (this is an obnoxious problem for me) and falling asleep is still sucktastic, and then every day I seem to wake up at 4:30 am unable to go back to sleep till 7 or 8am. This sucks, fucks with (i.e. intensifies) my fatigue, is creating a sleepy cycle (hahaha like I had one anyway) that is totally screwed up, and makes my hours of energy even shorter than they were before, even with the adderal.
blah blah. I’ve also been having crazy anxiety dreams. Today I woke up from a nightmare about missing a flight, a friend showing up with some strange wooden crafted life sized person that I was supposed to take with me on the plane, and a flight that was to leave at 5:30 so in my dream I was laying in bed staring at a clock that counted down. In the dream I kept having anxiety about other flights I miissed, which were actually other anxiety dreams I’ve had over the last few weeks. Weird.
I’ve had other dreams about getting yelled at by my docs, or my landlord, or zoya getting sick, paying bills wrong and the IRS harassing (which is actually happening) but none are as frequent and continuous as the dreams about missing flights. I’m not even going anyway! (though I wouldn’t mind a free trip somewhere American Airlines)
Just thought I’d share since I’m up, been up for 2 hours and sleep is not happening, and the only TV I can find to watch are reruns of Married with Children that, sadly, experience has taught me will be followed by an episode of Home Improvement, followed by 2 episodes of The Fresh Prince of Bel Air. Guess there could be worse reruns To watch. So I leave you with this gift:
Now this is a story all about how my life got flipped turned upside down, I’d like to take a minute so sit right there and I’ll tell you how I became the prince of a town called Bel Air
now it will be in all your heads today too. :::insertevillaughhere::::
I know you’re all wondering what this crazy girl is doing on the last friday night of 2011. This shitty year is about to end so I should spend the last full night of it in a way that sums up the whole year, right? right.
Well, I don’t want you all to be too jealous but… I’m so on it. Currently I’m sitting on my couch watching SNL’s best of Jimmy Fallon (currently airing on VH1) in the shirt I’d been wearing all day, my pj pants, a giant sweatshirt, some bright pink leg warmers, with my hair all over the place from being half up all day and then taken down without further brushing.
Feel free to take a moment to yourself if that sexy image was too much for you.
I’ve worked on 4 separate crochet projects, 2 of which I started tonight when the other two got too boring, none of which will be finished in the next six months. My hand got progressively more cramped but I kept picking up the yarn and hook when I got bored but forgot why I stopped the last time.
I’ve made sure to turn on the space heater and my hot humidifier so my bestest friend, zoya the tortoise, stays warm enough while she sleeps (and so I don’t get any nose bleeds from the dry air in my apartment). I also made sure to decorate by bringing my pillow and comforter from my bed onto the couch, where I plan to sleep, and leaving some random scarves and gloves laying around.
but wait! I know what you’re asking yourself. “What sort of snacks does one serve at a party of this magnitude?!?” Good question! I’m partaking in an aperitif of gin and tonic which I plan to follow with the last Lean Cuisine in my freezer. Since clearly this is a high class party, I’ll be serving baclofen as a digestif and within the hour I’ll be choosing between two fantastic deserts: Xanax and Ambien! After this, I’ll be falling asleep on my couch and likely waking up to a horrible infomercial when I need to use the bathroom in the middle of the night.
yah! Here ya go 2011 gods! bring on the next year.
All and all its the perfect representation of 2011, don’t you think? (well.. if there had been a blood draw or hospital visit involved it’d have been perfect..) Come on over!
Tomorrow I have my SSI doctors appointment. I don’t know what to expect. Been doing lots of reading about others experiences and it all sounds similar to getting ripped apart by the defense in an episode of Law and Order SVU. Things are terrible financially and despite the fact that I’m not sure what I can physically do at this point, I’ve been applying to jobs that sound remotely like I might be able to do them for at least a week or so heh. In turn I’ve received 8 rejection letters.
Not that it matters really since my pain level, motor function decline, and fatigue have reached a new high. Even after starting on Baclofen I’ve been having serious aches and pains. This weekend I had my first real “claw hand” experience. It was painful and gross looking and did nothing to help my anxiety level and depression. Today, I started getting numbness in my left hand and tingling and numbness up and down the whole left side of my body. UGH.
In any case, All that has made me sad and anxious and even more terrified about tomorrow. The idea that a doctor will pretty much work hard to trip me up, to prove that I’m “not that sick”, and judge my abilities based on at the most an hour meeting 1 time, is just frustrating and depressing. Last wednesday was my birthday. I tried not to focus too much on it. I’ve always been a big birthday person. I love other peoples birthdays. It is also, for me, very reflection inducing. This birthday was hard. I’m not good with change and especially not good without a plan for the future. Living at the whim of this illness aka accepting that my future may not end in the career I’ve worked for or any career at all, that my priorities have changed, is all pretty overwhelming. I’m no good at not knowing where things will go from here. I’m not the best at living in the moment. So when all I want is something to go right, something to ease off a bit so I can focus on getting on a treatment plan that works and getting through these symptoms that keep showing up, the idea that some stranger is going to decide if I get that is unnerving. If I don’t look sick enough, or fit some list or something, does that mean I’m lazy and I should be tougher? Does it mean that I should be stronger? That I’m just pretending that I can’t get up in the morning? Can’t feel my arm? Fall over all the time? have claw hand (which btw has been dubbed my new superhero name.. so no one try and steal it haha)
As the days go by and I go through all this it makes me think about all those “pull yourself up from the bootstraps” believers. I just wonder how many more people would do that if we didn’t strip everyone down to nothing before deciding if we’ll give them a hand, help them get up.
Anyway, just wanted to put this out into the world. Any of you have any experience with SSI doctors or feel like sharing something ya know where the answer box is..
this has been happening to me more and more frequently. This past month it was unbearable a lot of the time. I talked to my neuro about how much worse its getting and if it could be a side effect of my medication, fatigue, or something else. Its both a tightening, electric shocking like pain that moves up and down and an over all body ache from muscles to bones. SUCKS. My knuckles hurt. He seems to be sure its the MS. After reading some message boards I read a lot about what people call “spasticity”. There seems to be varying ideas of what this means but this is one of them at the “lesser” extremes. So today my neuro prescribed me Baclofen. Its some sort of muscle relaxant type deal you take 3x a day. Haven’t tried it but I’m aching right now so I might just take my first dose now. Not sure this is helpful but its definitely a pretty common symptom and not directly fatigue related (though really it all works together to fuck up our days heh)
Does anyone else get the aches in relation to MS? I’m not sure if it’s basic MS pain or it’s related to fatigue. It makes my wrists, arms and shoulders and sometimes in my legs and say, the backs of my knees.
I just want to thank everyone for their advice, support, thoughts, and just reading this darn blog. I can’t tell you how helpful its been for me to write about this and touch base with so many of you that are (unfortunately) going through so much of the same crap.
So after reading and writing and posting I had my appointment today. It wasn’t so bad. I’m pretty exhausted and achey today so I won’t go on the rant about how amazing it is to have a great doctor that you respect and you feel respects you. Its only been a couple months but the differences is beyond words. Anyway, I decided that if I’m sticking to injections I’m going to stay on the copaxone since the others are generally intolerable to me (side effects wise) but that this will just be until I complete all the testing for the other medication options. I’m almost totally leaning towards Tysabri after reading, talking to everyone, and talking to my neuro today. That is, we both agree switching to tysabri is a great plan…. as long as I test negative for the JC virus (which having increases the risk of brain infection a TON statistically speaking ..hahha I like to make the former statistician in me twitch). Anyway, If I test positive for the virus (which is not unusual) I am not at a critical mass quite yet that its worth risking a brain infection. In that case I’ll be taking my chances with Gylenia. I had my blood drawn and we’ll find out 3 weeks from now.
In other news my usual neuro exam showed some dramatic weakness in my right side (arm especially) which oddly enough I didn’t list as a major new issue for me. Guess all the aches and shock pain and muscle cramping made that seem unimportant. So due to that weakness, and the increase in pain, I’m scheduled for another MRI in Mid November (had one in sept.) and my doc has put me on Baclofen for the muscle/joint/ pain. I’m still reading about it but it seems to be a muscle relaxant of sorts. Not thrilled about more meds but that really pales in comparison to the joy at potentially getting some relif from this pain and from having a doctor actually listen to me describe my symptoms and not look at me like I’m nuts, making it up, or whatever and actually trying to help!
So following all that I went to the RMV to get my placard only to realize after an hour of waiting (cause I’m slow) that I was supposed to mail it in. So they did that for me and I came home and collapsed on the couch. So now I’m gonna try to make that collapse some sort of sleep hah. Wanted to thank you all again. You rule! <3