Very shortly after being diagnosed, I was faced with the fact that I needed to research and select a disease modifying drug (DMD) to try and stop the progression of the disease. At the time, the general protocol was to start with the one of the Interferons that were on the market. The first neurologist that I went to see (who was also the one to diagnose me and tell me the it wasn’t an OH FUCK MOMENT) provided me with a lovely stack of marketing materials for the choices I had. This stack included EVERYTHING from brochures to DVDs to a pen, a t-shirt and even a FRISBEE?!? Really?!? I wonder whose brilliant marketing idea THAT was? As if getting a FRISBEE with the name of a drug on it, would make me choose THAT one (although I must admit, it caught my kids attention when I brought it home!:) Once he had fulfilled his “duty” of providing me with the information, he then followed up that exchange with a suggestion that I find a new doctor. REALLY? You are breaking up with me!!! I have a story to write about that (surprising isn’t it) but truthfully, he WAS looking out for me and my best interests. He WAS NOT an MS specialist and although he done a bit of his fellowship in a hospital in an area that had a high rate of MS patients, he truly didn’t feel that he was up on the latest information and research about the MS. In hindsight, I find that to be a very honest and truthful thing to admit and to this day appreciate all that he DID do for me, before kicking me to the curb:)
So I was sent off to one of the “best” MS Clinics in the Pacific Northwest, and met DR. L. Over the next 5 years, she would become a close friend and a great pillar of support for me and the shit I went through (both medically and personally.) BUT, the first thing that Dr. L did for me was to help me decide on one of the choices and then contact the pharmaceutical company (Biogen) to let them know that she was putting me on their drug, Avonex. The way the process works is that they have trained nurses, that come to you, to teach you how to do the self-injection. And so the “official” life of having Multiple Sclerosis was to begin…
I was contacted in no time at all, and made arrangements for Mary’s visit. I was incredibly anxious about the whole ordeal, but figured, if it will help me, then I would find a way to get over my fear, and JUST DO IT (after all, there are SO many people with WAY worse SHIT to deal with, I was certainly NOT going to play the victim!) When she called to set up the appointment, I asked how long it would take. Her response was that it really depended. She explained that some patients get the hang of it and are able to do their first shot fairly quickly. But more commonly, it takes time and patience. NOT surprisingly, I wanted to be in the first category, and figured, I’ve always been strong willed. If there are thousands of people that have to do this daily (I kept thinking of the people I know with diabetes,) I could do it. To try and ensure this being the case, I scheduled a yoga class for an hour after Mary was to arrive. My thinking was…if I knew that I would miss the class if I didn’t get to it and chickened out of giving myself the shot, it would spur me on and make me JUST DO IT!
When Mary arrived, we started out with her showing me what the needles and packaging looked like. She then went over very detailed information about how to dispose of the used needles. She recommended taking an old laundry detergent bottle, labeling it very clearly with Rx, and dropping the needles in after each use. She then explained that I would then need to check with my city waste and disposal procedures to find out where I could dispose of the bottle, once it was full. (I remember thinking, yeah, that will be in about 15 years, given the size of the bottle and the small needles!) She pulled out an orange and explained that since the skin of the orange is similar in resistance to human skin, it is the preferred method for “practicing” injecting oneself. (Hhhmm, I wonder how many drug users have used an orange to practice?) Well guess what! I am SO SUPER EXCITED, and PROUD to announce….I had no problem shooting up that poor defenseless orange! As a matter of fact, I preformed the procedure more times than was probably necessary. I remember thinking, “wow, this is easy!”
Boy did all that change when the orange was replaced with my thigh!
The injections were to be inserted into a muscle, allowing for the drug to enter the blood stream as quickly as possible. I had listened carefully throughout Mary’s demonstration and instructions, and spent a lot of time assuring myself, “no problem!” “No, it wasn’t something that I had ever WANTED to do, but then again, I had never WANTED MS…it is what it is…so big deal!” I kept looking at my watch. I had only 35 minutes or I would miss the yoga class! I took the needle in my hand, pulled the skin on my thigh taut, as Mary had shown me, and FROZE! I kept trying to talk myself into it, saying out loud “okay, this time, one… two….three!” And…nothing! One…two…three! One…two…three!!! This went on for about 40 minutes (no yoga for me) and I was surprised to find myself in tears.
As much as I wanted to JUST DO IT, I found I couldn’t. There is something about your mind, wanting to intuitively protect your body…as in, HELL NO, I am not going to let you jam that needle into your own leg! That is just STUPID! I was mad and frustrated with myself. Mary was kind and supportive, and eventually I did manage to give myself the shot, but it took well over an hour of me sitting there with the needle hovering over my thigh, before it happened. I finally did it, and truth be told, it wasn’t as bad as I had imagined, but it was not pleasant either. Injecting directly into the muscle is painful, and if I’m honest about it, it really never got any easier. Each week, as I hit Sunday (my chosen injection day) and the afternoon wore on, I began to sweat and shake. Often times I would have a glass of wine (or two, or three) before “shot time”, which helped me relax, and made the process a BIT easier. But each and every week, I would remind myself, this is just another hurdle in my road to hopefully feeling better and getting back on track.
I wouldn’t know for a year, that it WASN’T doing that, I wasn’t BACK ON TRACK….I had derailed even worse:(
I had bad reactions to the drug. All the literature and information had talked about possible side effects, with some people experiencing flu like symptoms and I had each and every one that they said I might have. I would spend the night after the shot, having cold sweats (sometimes changing my PJs three or four times) and hovering over the toilet wondering WHERE all the damn stuff coming up from my belly had come from…didn’t think I ate THAT much! Still, I figured, if ONE day of feeling like crap meant that I was improving my odds with the disease, it was well worth it. I decided that Sunday night would be my injection time, that way I would get it over for the week, and although Mondays were a struggle, having not slept much the night before, by Tuesday I would be recovered and ready to go. I had my standing appointment with a personal trainer on Monday mornings, and that helped; working my ass off and sweating I think helped work the drug through my system. If I could get up and get through it, I was doing okay.
I remained on Avonex for almost a year, and although my condition with walking, and other symptoms continued to worsen, I repeatedly told myself I was taking the disease modifying drug (DMD) Avonex, and that without it, imagine how much worse it might be. I was doing what I was told: following the directions. So of course it should be working, right? My next MRI in November proved that this wasn’t the case. Apparently all those Sunday nights of wine and shots hadn’t gotten me anywhere. STRIKE ONE for Biogen!!!
So, Plan B was going to need to be put into effect, on to TYSABRI…