Saturday, May 17, 2008

Time To Consult The All-Knowing Magic 8 Ball...

Finally, I'm back somewhere between the living and the blogging world. I have not had a pleasant week. Which is NOT to say my weeks must all be "pleasant", although I AM wondering if that would not be too much to ask?!?

I don't even know where to begin to tell you about the "events" of this past week in the BrainCheese've already read about the fateful Tuesday of my Tysabri being withheld...only to then RECEIVE it the very next day. And then there is the matter of being TAGGED with yet another disorder...degenerative arthritis...which I am STILL begging to differ about this widely slung label. All water under the expansive bridge, I suppose.

Thursday, I awoke (if I ever really DID sleep?) approximately 4 inches shorter, as my head had retracted into my shoulders like a turtle within a shell...pain swirled about my upper body (of course, NOT in my hands...still can't FEEL those buggars!) as I tried desperately to elongate my neck back to its original length. The joints in my knees and hips ached as well and I recalled having a similar "episode" following my last dose of Tysabri...not to worry...I have narcotics available in my pharmaceutical arsenal. I decided to hit the metaphoric nail on the head abruptly with some Percocet and Advil, in hopes the painful experience would remit quickly. And this, my friends, is where my tale of woes takes a slide down the rabbit hole into Wonderland.

Between Thursday morning post narcotics and Friday evening, my life became a bit of a blur. And, there is only one way to describe the next 36 hours of time in this tale: I LOST MY SH!+. Plain and simple.

I proceeded to CRY the entire day Thursday (no exaggeration...the ENTIRE DAY) with my mind bouncing around like a loose sander on a board. I could not regain my equilibrium, could not "get a grip" (as one might say lovingly to someone in my circumstance LOL), and could not, for the life of me, put into perspective exactly WHAT was happening to me. It was as if someone had replaced my tightly wrapped, anal retentive, calculating mind with the brains of someone circus-freak crazy. I observed myself have a near out of body experience while I tried desperately to keep one foot firmly nailed to the floor. I was in the throws of "having a moment"...

After an urgent call to the only doctor I trust to confide in where matters of the psyche are concerned (aka, my psychiatrist), it was decided the only way out of Wonderland was to SEDATE MY SORRY ARSE. Which, I did willingly, from the drug store I call my medicine the dosing advice of the good doctor. I proceeded to be "sedated" well into the afternoon Friday, waking into consciousness only long enough to be certain I had notified my work I would not be in.

If this experience could in anyway be compared to a "bad trip", as sure as God is my witness, I would NEVER EVER take a hallucinogen (LSD, etc.)...and, of course, I never HAVE taken drugs of this class, so I have no idea what deliberately inflicting such an experience on myself would be like. I DID take enough benzodiazapines and tranquilizers to knock down a large elephant...very fortunate to have had these on hand. WHY do I have these on hand, you ask? Because over the past few years, I've had every drug known to modern man thrown at me for this symptom or that ailment. And, as is typical, I comply with the initial request to TAKE the pills...once or twice...then abandon the costly candy deciding the original AILMENT is easier to tolerate than the SIDE EFFECTS of the drugs.

WHICH brings me to my idea of needing to consult my Magic 8 Ball...drugs...MS treatment options...longevity versus life quality...and whether or not to roll the lucky dice and simply FLUSH all this MS crap out of my system and start anew?

My jury of one in the courtroom of my head has been pondering the evidence presented this past week. Was it the Percocet/narcotic that tipped my scale into utter madness? Doubtful...I've taken this drug many times for pain before...but I suppose it "could" have caused an adverse reaction. Was it the lack of sleep I have been experiencing DUE to body pains in the night that caused me to want to howl at the moon? Maybe...but I've certainly been far more sleep deprived than this past week...and never ONCE had a similar experience (paranoia and visual hallucinations with severe sleep deprivation in the past...but that's an entirely DIFFERENT post!) not likely. Did the Tysabri set me sailing aboard the banana boat? I don't know...I've now had a total of 6 lifetime doses of this drug without ever experiencing the likes of symptoms I did this week...and NONE of the FDA literature lists "Batsh!+ Crazy" as a possible side effect! Have the lesions in my frontal lobe finally created enough space for misfiring synapses? I think THAT explanation...blaming it on too simplified. Have I finally traveled to the edge of my great mental abyss and peered into the black hole of mental illness? Doubt it...don't think I'd be "back" talking about it if this were true (those that know me, hold your tongues!).

So what DID happen? What precipitated this "event"? I honestly don't know and I doubt anyone could clearly TELL me either. It felt extremely "biochemical" in if out of my a heart attack you didn't know was lurking in the veins or a diabetic insulin reaction only reversed by glucose. And because I have worked for 22 years in the psychiatric field, I believe I am allowed to weigh in an "expert" mental health opinion, which is this: I AIN'T NUTS.

What I DO know is this (after consulting "the Ball")...I am NOT willing to have this experience again if I have any say or control in the matter. I may NOT be able to control my MS (although I AM looking into the idea using mental imaging, etc), but I DO have control over how I choose to treat it and the symptoms Multiple Sclerosis bestows so graciously upon me. What I cannot answer for myself at this time is, HOW to go about changing not only the physical components of my MS, but the psychological ones, belief system, which incorporates Western Medicine as well as my fears of NOT treating the disease and being unable to remain employed due to out of control symptoms.

What a crap shoot. There's no manual with footnotes on the "rights or wrongs" or predictive futures based on this or that decision. If I don't stay with the Tysabri, do I risk a sudden and severe worsening of what has already been labeled "aggressive MS"? If I stay on the Tysabri, do I risk untold permanent damage yet to be discovered in the human experiment? If I stop taking Advil/Percocet/Zanaflex/Baclofen and all the OTHER assortment of "as needed" medications that relieve MS symptoms enough to let me FUNCTION as part of the working world, will I simply curl up in a ball and give up? (And for those of you I do NOT take ANY of these medications on a daily basis, but there are times when they are the only thing that relieves a symptom that might otherwise keep me immobilized in bed.)

This week has certainly caused me to question many things...perhaps my "pseudo-insanity" cleared out a space in my mind to THINK more clearly. But these are the thoughts/questions rolling around in the creases of my brain and I've come to no solid conclusions or answers...only more questions.

How did YOU come to the treatment conclusions (or decision NOT to treat) you have made in dealing with your MS (or any OTHER life-altering disease, for that matter)? Where do YOU find your personal answers?

Now, back to the Magic 8 Ball...I have to decide what to eat for supper...



Linda, I'm so sorry that I have no answers for you. So far with the MS, I am putting my faith into the injectibles right now and I've found the neurontin and baclofen to be helpful.

Probably the RA diagnosis, and the subsequent drugs, was the most life-changing as it gave me my hands back and protected me from going under the knife.

Only you can determine if the chemical imbalances and their effects on you are more damaging in the longterm. I wish there were something I could say to make it seem better.

Sharon said...

I feel for ya girl. It is frustrating to know what is causing something when you have so much going on. I think your instincts have worked for you in the past and it will all come together. I wish we lived closer so I can be there for you. Sorry I haven't been around much, been going through my own stuff and trying to figure things out. Haven't been in the mood for bloggerville. Keep me updated.

Michelle said...

Oh Linda. Giving you a ((((((((((((HUGE HUG)))))))))))). I have never taken the CRAB drugs. I have tried quite a few for pain with no effect or severe side effects. My only treatment is Sativex for pain. It doesn't eliminate it, but takes the edge off to make most moments bearable. Creativity is my only true aid. It's what keeps me sane and it's how I survive. My MS symptoms forced my early leave from the workforce and I am lucky enough to have a wonderful caring husband and that I was approved for Canada Pension Plan Disability to ease the financial burden. I have no words of wisdom other than you have a strong, take no sh@# personality and I know you will prevail. Stay inspired!
Expand your mind ~ visit Brain Angles

Anonymous said...


It is disturbing I know. But from what I hear you need to hang in with the Tysabri, it usually takes 5 or 6 infusions before it really kicks in.

Hope it works,

Bubbie said...

"What I cannot answer for myself at this time is, HOW to go about changing not only the physical components of my MS, but the psychological ones, belief system, which incorporates Western Medicine as well as my fears of NOT treating the disease and being unable to remain employed due to out of control symptoms."
Linda, I think this was your ticket for that boat ride.
Maybe it was for the better that the choice was made for me.Doc's orders. I was physically unable to work.Dealing with the fear factor is still an on-again, off-again dilemma that I try to face within.
Take care Ms.Cheese.

Anonymous said...

Hey Linda, I'm with you in spirit, lady...MS really sucks and darn it anyways for sidelining our lives with decisions like this and symptoms like that. Alls I know is that one (of the many) personal discoveries I've made over the years is that, for me, it is true that what doesn't kill ya makes you stronger. Whoopee!!
I've been on a few of the lovely meds that are out there for this fun disease, including Novantrone X 5 doses and Tysabri X 2 doses. The decision making barometer for me was whether the SE were worth the potential "cure" or "cease fire" promises. I was lucky in that I had no allergic reactions and I really tried to hang in there to give the drug a chance to do it's so called magic. Tysabri I would have continued longer but for the fate of an insurance change.
I'm now off of all except the occasional Baclofen and I'm giving low dose naltrexone a run and a go.We'll see. I admire your tenacity and wish you clearer head spaces and a remission of painful episodes..Hugs...Sue in California

Anne said...

Hi Linda: Sorry to hear about all your reactions to stuff. No answers here either because what works for one doesn't always work for another.

As you know, I chose to not use conventional MS therapy and have not been brave enough to "try" anything that's been offered in the last five years.

As for my pain, I use hydrocodone/apap 10/650 on a very as needed basis - rarely more than 2x/3x a week.

Interim, I use cool whirlpool here at home. I've been known to sit in the whirlpool tub with a book for up to 3 hours. The only thing not wrinkled up in the water is my hands because of holding the book!

So pain-wise, that's been what I've been doing for that.

As for BATSH*T side effects from your regular stash, as you know, sometimes it just hits you like that - chemical imbalances in the body not jiving right with regular med intakes. Plus who knows what the Tysabri does chemically to your body and alters your reactions to regular drugs you are used to?

I'm glad you were coherent enough to write your post! Proves you are on the mend at least. LOL

Take care,

Joan said...

My treatment conclusions are based on my answers to the following questions:

1. Will the cure kill me? In other words, are the side effects causing more problems than they solve?
2. Can my symptoms resolve over time if I just leave everything alone?
3. Do I have the patience to wait for my body to heal on its own, or am I in so much discomfort or angst that I absolutely have to do something NOW?
4. Do I have the luxury of allowing my body to heal slowly on its own, or am I required to go to work or travel or be nice to people?
5. Does my body have the capacity to heal on its own? I often can't get a straight answer from my body on this one, so we usually fight then stop talking to each other. It's never pretty...

Spaz Attack said...

Luv your humor, Indentify so much with what you are going through. I too take as little meds as possible --- just to help endure. I'm conflicted though. I'm always in pain. Last neuro visit she said my MRIs looking much better than last. I asked why I felt so much worse? I have much more pain, numbness all over. She said because my body is tired and breaking down - great, right? So what's the answer? My "gut instinct" can't be trusted, nor my brain of black holes.But I WON"T ever do steroids or interferons again!
Luv the attitude of your neuro LInda (stop being so f-ing stubborn). I'm in Seattle area too. What is her first name or initial of first name? Hope you get things undercontrol and don't have anymore "Acid" trips.

Jaime said...

It seems like forever since I have left you a comment. I am sorry you are going throught this craziness with MS and/or Tysabir and/or....who knows what?! Fortunately you have not lost your humor and sarcasm about everything. Hang in there and take care.

frau1979 said...

Hey Girl, MS sucks and no one knows exactly how you feel but you. Find some little things to keep you going during the day--islands of oasis. You've got to to keep your mental sanity. I've been in situations where I was in bed for months, crying and barking at anyone who tried to offer love. It's so hard. I've had so many ups and downs. NO ONE knows when they will go and what will happen to them tomorrow. LIFE IS SHORT. Find joy somehow, in each day. I love your blog and your writing.

TickledPink said...

Wow! That sooooo sux! I had no idea you were going through this since you are always flitting around from blog to blog leaving your witty comments.

I can't say anything about side effects from DMDs as the only ones I've ever been on were Copaxone and now this mystery FTY720 stuff. I never had either do that sort of thing to me.

I can tell you that last year my last relapse included the added bonus ride of emotional issues. Never before has my MS done that to me, but I was having incredible panic attacks that just washed over me and took control. I know exactly what you mean about feeling as if you are on the brink of mental illness. I was totally freaked out.

The panic attacks were treated with Xanax as needed. Doc wanted to put me on an anti-depressant but I was terrified of that. I just clung to my Xanax and wouldn't leave home without it.

3 months later they were as good as over. Haven't had another one since and actually feel mentally "normal" whatever that is.

Just could be the MS because in my case it was.

((((hugs to you))))

Magic 8 Ball says "Highly Likely" when I asked if you would pull through unscathed.

When I asked about winning the lottery it says to come back tomorrow. Doh!