In my last entry I wrote all about my diagnostic year- 1988. It sent me back in a whirlwind of memories — both good and bad — from that time. I’ve found when looking back the bad times, they are empowering. At least from the perspective of time. Surviving anything that is challenging is a shoring up of character. And there were more than a few things fitting that category, that year.
I mentioned the impact of disease modifying drugs- and how that transition from nothing to something was and continues to be a powerful perspective. I think it warrants more blog-coverage.
So let’s rewind, not quite so far as 1988 to 1993. With 5 years of MS under my belt I had experienced a good taste of what my MS meant. Nothing happened in those early years to help me cope with my uncertain future. As much as I looked for a pattern, I found myself with a series of clues that didn’t lend themselves to any conclusion. I had 2-3 accute episodes a year that included a veritable pu pu platter of MS symptoms. (fatigue, difficulty walking, poor stamina, a wide array of unusual sensations, small motor skill limitations, jumping vision, bladder issues) A set up that would become the classic Amy Gurowitz version of MS. But finally… all the muttering about developing drugs to treat MS … the FDA passed one. And with that, I entered the first ever drug-lottery.
Along side an enormous group of eager (understatement!) MS patients, I crossed my fingers as BetaSeron, the first medication approved by the FDA to specifically treat Multiple Sclerosis was approved. This development sent off great vibrations in the world of MS. Everyone living it clamored to get a portion of the premier Rx to treat the untreatable. So much so, Berlex (now Bayer) couldn’t possibly accommodate the demand with the supply. My understanding at the time was that although the drug was proven effective for Relapsing-Remitting MS, people with every stage of the disease were given prescriptions. And who could blame them? Considering this was the first and only option, and some had been coping for decades with nothing.
So, along with the rest, I drew my number…
…and as I feared it was very high.
I remember it clearly. It was 9-something. Okay, I remember clearly how I felt when I realized that I would not get the drug for over 10 months! A little dejected to say the least. I searched for something to feel good about. At least I won’t have to deal with those crazy side effects!
And so, my optimistic-at-all-costs approach kicks in, and gets me motivated. All the energy around this lottery got me thinking… There had to be another way.
So, I went to my neurologist at that time, Dr. Howard Zwibel in Miami, and asked what was on the pipeline. He told me about COP-I (now known as Copaxone) and how they were in the late stages of their drug trial, and looking for patients to add to their portfolio to strengthen their case to the FDA. The immediate obstacle was that I would need to pay for it myself – to the tune of $2400 a month. (ouch! My film archive salary wasn’t going to cover that!)
So, after much consultation with my family, we decided to chip in and forge ahead. Doing something felt much better than nothing as I nursed my crestfallen mood resulting from my bad luck in the big lottery. In spite of the fact that I would be on a drug that I had to pay for, that required me to inject myself daily, and ultimately may not even work- I was excited with potential. 5 years of question marks and uncertainty, it was good to be active for a change.
Next hurdle- the injections.
I went for my first lesson on how to inject myself with my sister Leslie. She has always been good at this stuff…. me- total wimp! In an emergency that requires quick thinking? -Hope that Leslie is near. Need a person who can re-frame any challenging scenario? She’s your woman. So, I chose well in looking for injection support. And I did need support. But who wouldn’t? I don’ know anyone who says, “Shots? I don’t mind ’em”
So there we were at Baptist Hospital… raring to learn. (more like scared *@!%less) At that time the process was very different. The needle was 3/4″ and a thicker gauge. It came in powder form and needed a little saline mixing and transferring before the syringe was ready. All this was hard to do when I was freaking about the final step. But I did it. In my thigh and in all honesty it HURT really badly!
I remember heading home with my huge box of supplies so frightened that I had to do this everyday. Leslie reassured me that I would get used to it. That my pain threshold would rise and that until that happens she would happily be the injector: Working out years of oppression as the younger sister… one shot at a time!
So at this point I wonder, if in fact I should continue on with this story in such detail, sum it up and end it now, or go with a to be continued– Like the last episode of Happy Days before the season ends and Fonzie is planning the jump 10 cars with his motorcycle. Is this that cliff hanger?
Let me know!
Wait a minute. There’s more to this story……
Don’t leave us hanging like that.
That was a very interesting story. I think I would like to hear the rest. I am not on any injections curently but I see my neurologist very soon and I am not sure what he will recommend.
I like your cool poll thingy! yes of course we want to hear more of your story. These stories are so important and especially for people like me…who are not currently on any drugs and want to know what it might be like. The needle aspect of things does freak me out I must admit. I am so hoping for the oral meds to come soon.
Just wanted to pass along too…our beloved Diane Standiford graciously acquiesed to doing an interview for me for Health Central and you can check it out here: http://www.healthcentral.com/multiple-sclerosis/c/73302/home
Wanted you to know as well…I passed along the idea of podcasting to my editor and she loves the idea. I have never done one before but it sounds very exciting. Perhaps there will be a way soon for you to do podcasts there. We will see what happens!