Thursday, February 28, 2008

Precarious Balance...

No change in my current symptoms prompted me to email Dr. She Who Will Not Be Named today in the most pleading of is a rare thing for me to stoop to BEGGING for pharmacological intervention...I'm sure this was a consideration in our subsequent communications. The decision was made to hit me with another blast of Solumedrol (if I had a dime for every bag of THIS juice that has been run into my arm I'd be...) for 5 days...and, for once, I'm in full compliance and agreement with the plan.

It is a precarious balancing act when trying to make medications decisions regarding Multiple Sclerosis. There are the initial "to treat or not to treat" questions that most MSers face when first diagnosed. Should I take an ABC injectable drug? Tysabri? Become a drug study participant? What is the "right" choice for me in my current circumstances? Will any drug be effective in slowing down the progression of my disease? Will I be able to tolerate the side effects? The answers to those questions fall somewhere on a broad spectrum for most of us and seem to hold no "right or wrong" in the becomes a choice of WHAT YOU CAN LIVE WITH versus what you can live without at times.

Then there is the decision whether or not to take something ongoing for chronic SYMPTOMS. Should I try the Baclofen/Zanflex/Flexaril for my spasticity? Will the Lyrica/Topamax/Neurontin help with my neurological pain? What are the side effects of Provigil/Amantidine/Ritalin and will those side effects outweigh the benefit for my fatigue? The list of medications and choices goes on and on...and we choose them based on consultation with our specialists, our past experiences, and a tiny bit of luck thrown in.

And then, there is also that decision whether or not to treat an MS flare/relapse...something we ALL know from experience will not kill us and will most likely resolve itself, with or without treatment. To take the steroids or not? This is the question that has been currently front and center in my own experience.

I have decided to "take the treatment" for this most recent car accident/virus/MS flare and I will tell you why. Some will not support my decision or my rationale for it while others may wonder why I have not made this decision EARLIER in the relapse. It WAS offered to me initially (before the virus became front and center and medically speaking, too potentially dangerous for me to be infused with Solumedrol)...all I can tell you is, today's set of circumstances--waking up to a continued inability to walk without assistance and pain, as well as having to miss yet another day of work--was the final straw on my decision back.

I weigh out many factors when trying to decide WHAT to treat WHEN during the course of my MS and/or relapses. More often than not, my decisions get based upon what I CAN'T live with rather than what I can. If my pain is so great it is affecting every aspect of my life, I request treatment. If my ambulation makes it nearly impossible to take care of my own activities of daily living like toileting, I request treatment. If my vertigo becomes so severe and disabling I begin to focus on having NO future, I request treatment...and so on.

I weigh out carefully the CONSEQUENCES of any treatment as well. If the insomnia/ravenous appetite/jitters of steroids is more overwhelming than the pain or MS symptoms, I refuse treatment. If the nausea/vomiting/fatigue of Interferons leaves me incapacitated more days a year total than ANY RELAPSE, I refuse treatment. If the long term side effects of any medication pose more risk than I might be willing to live with SHOULD I develop them, I refuse treatment.

Currently, I have been missing several days of work because of my viral infection that has now culminated into an MS relapse. I initially and instinctively knew I needed large amounts of rest, which I have provided for myself...not only to kick the virus out of my life, but to also restabilize my MS. I don't LIKE sitting at home with nothing to do but rest, and still I have done just that...because the potential CONSEQUENCE of NOT resting seemed far greater than a few days at home. That decision was almost a week ago, and I am STILL no better than I was on the weekend after my fever subsided.

I am a single, white female (bet you didn't know THAT, huh?!?) who's primary support is myself. There is no income flooding into my home from outside sources other than what I bring home to the table. There is no one standing by to wait on me, fetch for me, carry me to the toilet (and this is also a CHOICE I have made for my life a few years back...not crying in my booze here...I decided this was a better life for me!), or fix my meals. And, when "well", this is a wonderful arrangement...LOL I make my own money, I spend my own money...on ME...and of course, my cat (who is as useless as tits on a bull when it comes to caretaking me).

I have to always be mindful of just what impact my MS/illnesses/relapses are having on my employment situation and just what I can AFFORD (consequences again) to take for granted and what I cannot...second guessing what my BOSSES can afford to take for granted as my employer and what they cannot also weighs heavily on my mind. And believe me, I have a WONDERFUL employer who has always been very supportive of my absences...there are unfortunately, LIMITS to that support...both physically and financially, which is no fault of theirs or mine.

I am a single, white, female who is generally highly energetic (bet you didn't know THAT about me either. LOL) and requires a certain amount of intellectual stimulus to remain sane. Most of the time, that stimulus comes from my friends and my job. When I am in the throws of my MS/illnesses/relapses, I find myself dipped in discouragement that I might ever get better...doing the "just accept it" dance of complacency...this wreaks havoc on my mental stability and I begin to close off others from my world in an effort to "hide out". And, the more I hide out, the more discouraged I become...a vicious cycle of self-defeating emotional turmoil.

For all of these above reasons, I am choosing to TREAT my relapse at this time. It is not just one of the above reasons, but a combination of them all that has prompted me to request and comply with Solumedrol. And I share all of these reasons with you for a "reason", too. It is my hope in sharing the multitude of issues in my personal balancing act, that there will be something in my situation that might resonate in YOU as you decide what course of action(s) to take in your MS. "We" have MS, but "we" are all so very different in how we deal with, understand, react, work with the disease and there is no ONE right or wrong answer...the key is to find YOUR balance...and stay on the rope...

What considerations do YOU weigh in when making treatment choices for your situation and MS? Care to share some insights?...hint, hint...


Diane J Standiford said...

My decision from DX forward was based on what I told my neuro: "KEEP ME ABLE TO WORK." I loved my job, had just started, and when any symptom got so bad I missed work--Solumedrol--the cheap wonder drug for the beginning years. (I've been shocked to find people sufering whose Drs. never mentioned Solumedrol. It is cheap and around so long;not $$ to be made--Just a LIFE to be restored.) My decision process was much like yours. I haven't had an exacerbation in years. Insight? Just an observation: I have yet to find the person who stayed on Novantrone the full time allowed, or the person who while on it had no symptoms. Any chemo seems to hold MS at bay for a bit; just like pregnancy. For me the harsh effects of chemo are unacceptable; another deciding factor for me: I plan to keep as much of my body healthy as possible--"First do no harm." I had few sick days over my working years, thanks to Solumedrol. I feel for new MSers, so many drugs now, so many decisions. At some point trial and error must come into it. I hope you do well with your current fight. (I never took S for 5 days, that will be rough.It will leave you vulnerable; I hope you can plan to stay home a few weeks.) We all will be pulling for you.

Shauna said...

After my first and only treatment with IV steroids, I vowed never to take them again...they started to make me a little bit (more) insane. But they say "Never say never". Luckily, I've not had to take them again. And with age and wisdom now, I know that if it is deemed necessary, I will take them.
I know it's not an easy decision to make for most of us. Careful consideration of the pros and cons is necessary.
I am particularly interested in your mention of the "social" aspects of not working...I agree completely as many of us who have little support (either physically or emotionally) at home would find the not working very difficult. And being a social animal, anything that detracts from our ability to interact will have a negative impact.
Good luck with the steroids. Have some good munchies near.

Anonymous said...

Everything you've said sounded clear and well thought out. I think the IVSM will certainly short circuit your current exacerbation and get you on your feet quicker. Probably that will be worth the crappy SE of the steroids, yes?
I've been on every 3 month Novantrone for 5 doses worth and I did that because my reasons were pretty much aligned with yours...I couldn't live with the obvious progression of Sx and was ready to shoot the dice on a possible helpful therapy. It hasn't lived up to my expectations, but what med does? I do try to stay grounded in reality though I sometimes stray into the past of "things I could and did do with one hand tied behind my back!"
I wish you recovery from this current scourge and thank you for your insightful postings.
Sue in California

Anne said...

"What considerations do YOU weigh in when making treatment choices for your situation and MS? Care to share some insights?...hint, hint..." WOW, is that an open invitation to us who can't stop posting comments!!

Hello Linda: I pretty much take into consideration all of the things you did before going on IV. For me, going on IV also means having insulin on hand (because my blood sugar soars), having necessary things within reach (because my vision is all but gone), and have smoothies, yogurts, and puddings on hand (because my appetite is nil).

I am one of those people who has the opposite interactions than indicated. If it says I will sleep - I will be up all night; if it says appetite increases - I won't feel hunger. Coffee makes me sleepy.

For all the (almost daily)oral prednisone and IVSM I've taken, I should look like H R Puff 'n Stuff, but the moon face is lost of me.

I know you'll be fine in a few days. IVSM is a miracle drug to us MSers.

You're in my prayers. Take care,



Thanks for the encouragement...and I hope your 900 words a day for 70 days keeps you writing and posting and writing!




It's a strange thing to be so tied to one's occupation that the content of the work is not what is missed, but the "social" aspect...of relating to other human beings. Kind of makes work just another rich slice of life if you think about it...which is nicer than believing it is simply drudgery...




Glad to see you back and thanks for sharing YOU are taking the blue carpet dye as well! Yes, you are right...I have STILL had flare ups while on the Novantrone, but my MRI's have ceased looking like an O'Hare runway at night, which has to be an improvement. And now, I consider returning to Tysabri to give it another shot (or IV as the case may be)...we just seem to roll the dice and think there is some magic in our fingers and wrists as we throw them. But I imagine in the end, we will learn it is nothing more than statistical odds and an ounce of luck.




Thanks so much, Anne...I always treasure your insightful comments AND practical solutions from your experience. I do wish I had your adverse side effect of NO APPETITE from the Soly...I have worked soooo hard to lose almost 17-18 pounds since the first of the year and I fear a 5 course meal of Soly may defeat my purpose! Or, at the very least, jump my train off the track. Surgical sewing of my lips shut??? Naw, I'd probably just try to eat through my nose!


Anne said...

Through your nose??!!! LOL

NG tubes are not me. Been there & done that for two years. Didn't want a peg.

It's been a day or so, and I hope you are feeling better.



Who said anything about a TUBE in my nose?!? I was quite skilled as a child fitting everything from rocks to carrots in my nares...LOL