Eminess is Back in Charge

 

"Jesus H. Christ!  All I'm trying to do it pick up a 100- foot, dry garden hose and put it into my Herbie Curbie."

Those were the words I murmured under my barely-there breath as I leaned against the dark green dumpster waiting for -- no, praying for -- a second wind. 

There are so many possible explanation for this decidedly new weakness of mine, it's hard to know where to begin.

I am in my late sixties.  My octogenarian mother reminds me of that each time she calls to discuss my health report of the day.  Just because I could have coiled that damned hose up, slung it into one shoulder and walked the distance to the dumpster with nary a droplet of sweat appearing on my forehead a year ago, doesn't mean I should be able to do it this much further into my dotage.

Then there is the upper-respiratory virus I'm still battling after nearly three weeks of coughing, wheezing, sneezing, strangling and daily unplanned naps.  That sure has taken any pep I might still have out of my step.  I still can't even blow my hair dry without taking two or three breaks.  My arms won't stay up! 

I'd much rather attribute my feebleness to those things than to that bitch, Eminess.  Oh yeah, we can't forget her now can we?

Eminess is the name I have given to my new constant companion, multiple sclerosis.  

She is feeling pretty smug these days because she has taken over again.  I had been extremely encouraged by the prognosis of shortened episodes and longer remissions offered by the drug Copaxone I was injecting daily.  The fact that I was soon covered in subcutaneous lumps under the injection sites that itched for three days each gave a whole new meaning to the term miserable.  

Copaxone is considered one of the safest of the three or four drug therapies used for MS, because it doesn't interact with any other drugs a patient might also need.  Since I first wrote about the $42,000 annual cost it would be to an uninsured patient, I have come to understand where all that cost is coming from.

This is not something one just gets a prescription for and has the local or mail-0rder pharmacy fill it.  This drug is handled directly by the manufacturer.  I should have gotten a clue when the doctor handed me the shrink-wrapped, multi-media informational packet and told me a nurse would be coming to my house to train me on the self-injections.

This nurse works for the manufacturer.  She came equipped with an auto-injection contraption, ice packs, alcohol wipes, a daily planner, a wall chart, a refrigerator magnet, a vacation kit, a rubber ball for practicing injections and a whole list of other collateral crap I could have free for the asking.  I have a background in sales and marketing.  I KNOW how much all this stuff adds to the cost of any product.

And the customer service?  Second to none.  I had my own nurse, Linda, who called me every week to see how I was doing.  When I complained of the injection site reactions, she lapsed into sympathetic oohs and aahs and swore it would get better with time.  As if the process of shooting myself up was something akin to rocket science, she quizzed me to make sure I was doing each step correctly.  I was.

The second week I was even more miserable because I had fourteen separate injection sites in varying degrees of rage.   Again Linda was most sympathetic, but this time I wasn't as receptive.  Again she ran through the procedure list.  Again she declared I was doing everything right.  Again she repeated it would get better...but maybe I should see a dermatologist.  I didn't even ask what that was supposed to mean.  

The third week I was frantic.  I called my neurologist, whose assistant assured me would call the next day.  He didn't.  He didn't call all that week.  I called back.  He was on hospital rounds, but a call to me was on his schedule.  Guess what?  He didn't call that day, but he did the following day.

"What's happening with your injection sites?"

I told him.

"Then stop taking the shots.  You are allergic to them!"

What!?!?!?!?!?  

Then I understood completely.  "Linda's" job is not to look after me so much as it is to make sure I keep injecting the drug.  All that investment of collateral materials, hands on nursing visits and weekly "sales" calls had to be recuperated. All the manufacturer's written materials listed the reactions I was having as "common" and "temporary."  My doctor says something entirely different.

Anyway....

I have stopped taking the shots.  I had a short withdrawal that wasn't pleasant, but I lived.  I am still itching, albeit not nearly as badly, and the lumps are slowly receding.  

And this week I must see my neurologist and discuss the next, less "safe" option.  So, Eminess is back in charge and it is very likely that she is responsible for the fatigue and weakness I am experiencing.  

Eminess: 1, L: 0.

Why is it that the treatments for serious illnesses often make us feel much worse than we ever did before the diagnosis?