This blog may seem quaint or heart-breaking in light of recent developments regarding interferons. http://www.nytimes.com/2012/07/18/health/research/multiple-sclerosis-drug-doesnt-stop-disability-study-finds.html?_r=1
“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow.”
“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow.”
-Orison Swett
Marden, American writer associated with the 20th Century New Thought Movement
First, a moment
to vent about the excessive heat here in the Northeast. Cabin fever is
setting in, and I am not happy. At least we have air conditioning, the Internet,
and podcasts. Do you listen to “This American Life”? If not, I
recommend checking it out. “Fresh Air” with Terry Gross is good, too, and
Alec Baldwin has a great podcast called “Here’s the Thing”. But I digress.
So, recently I began
taking Avonex again. (After ultimately losing an excruciating six-mont-long
insurance appeals process to get
Rituxan, my doctor advised returning to Avonex, at least for the time being.) Fourteen
years ago, it was the first of many drugs I took to slow the effects of my MS,
the first in a series of injectable/intravenous drugs (we always remember our
first one, don’t we?). I can’t recall the details, but I must have stopped
taking it in order to begin taking Copaxone, then Rebif, and on and on. After
a while, you kind of lose track of all the disease-modifying
pharmaceuticals. We invest hope and faith in them and then try to get on
with our lives. Now, I suppose I have come full circle, back to Avonex.
And they say you can’t go home again.
The first time I
took Avonex, the drug triggered a severe emotional reaction that resulted in
harsh anxiety more from tapering off of the oral steroids my doctor prescribed
to alleviate the Avonex side effects. Have you ever tapered off a large amount
of steroids? It feel like you are getting electrocuted. I was convinced
the disease was progressing at an unprecedented rate. I joined a support
group (“You Look So Good”), the only time ever, began to see a psychiatrist,
took anti-depressants, and hit a severe personal emotional low. All while
working a full-time job and trying to maintain a semblance of normalcy
everywhere else in my life. Those were good times.
Fortunately,
they lasted a few months and are far in the past. So, after the decade of
Copaxone, Tysabri, Novantrone, and all the other junk I poured into my body,
coming back to Avonex was going to be a piece of cake, right?
It is Sunday
night a few weeks ago, and I have gotten out the materials to take my first Avonex
injection. Things have changed a bit. The drug company has devised
the Avostartgrip: you attach this piece of plastic to the syringe so you can
control the dose and taper up to the full dose over the first month: quarter-dose
the first week, half-dose the second week, and so on.
The only problem
is the pharmacy didn’t send syringes to go with the grips. They sent the
Pen injectors. Now in case you are wondering, let me explain. It is impossible to
fit the grip on to the Pen. It just isn’t meant to be; it physically cannnot
happen. But I figured if the pharmacy sent these materials, they must know
what they were doing. But the joke was on me because I spent about an hour
trying to make it work, culminating with my pressing the button on the pen and
spraying a full dose into the air. Fun, fun, fun!
After a few
phone calls, the proper syringes were mailed, and now I’ve somewhat reluctantly
returned to my Avonex routine, accepting that I am going to feel lousy the
morning after (headache, fatigue, etc.). Oh, the adjustments, compromises,
tweaking we have to make in our lives to preserve our function and abilities
(and sanity). It can suck the big one but we gotta do what we gotta do.
Please, please
stay cool, wherever you are. Have a civilized couple of weeks!
Best Wishes,
Marc
marc@empirelifecoaching.com
P.S. The rockin' little number I was listening to 14 years ago still resonates today.
Medication by Primal Scream.
Check it out here: http://www.youtube.com/watch?v=N4m-GZpbX_E
