Because I had no idea what happening to me nor did I even know what the letters MS represented, when it came time to begin medical treatment, my limited knowledge forced me to conform to whatever course of drugs put before me. Beta Seron, a self-injection, came into my life not long after my diagnosis. The only other two options mentioned were Copaxone and Avonex, both also injections.
I didn't know the difference. My foggy head was full and heavy with information overload. Willing to do whatever I was told to do, I learned to stick a needle into myself, keep an injection site map, and only cry in private. Initially I had to manually inject myself, but eventually Biogen came out with an automatic needle injector, which truly made the process less difficult as long as I didn't jump at the noise the injector made upon activation. I even go excited when, after a couple of years, the rather drab looking injector changed to a colorful version of it's former self. (It's just the little things, folks.)
After eleven years as Beta Seron junkie, I was introduced to an oral drug. The medical student who originally diagnosed me was very excited about Tecfidera and his excitement spilled over to me as I anxiously awaited approval to begin my departure from needles, ice packs, and nasty looking bruises.A pill for multiple sclerosis! What I didn't know at the time was that Tec was not the first oral treatment for MS. My knowledge had not expanded at all, but I was ready and willing to be lead down this new option for combating my disease.
The warnings were clearly stated, but I was aware of a settling-in period and was patient. And at first everything was fine. I took two low dose pills a day. I kept my pills in a cute little green case and was totally thrilled to ad this fashionable accessory to my wardrobe. Hopeful...I was so very hopeful.
And then, the dosage increased as was the plan. i read and re-read reviews, warnings, cautions, but NOTHING prepared me for the hell that imprisoned me for the entirety of the anguish that my Christmas break held for me. I was still teaching and planned to ease into this increase in poisons I put into my body during a time aware fro students.
Following a three day vacation on my bathroom floor, I realized that maybe this wonder drug was not for me. Vomitting, diarrhea, headaches, lack of appetite...Although it was flue season, there was no way this was any strain of influenza. The advice I received from the medical world? "Maybe you should arrange a leave of absence until your body acclimates."
Let's take a look at the REALITY of this suggestion. I was the bread winner at the time. There was no way this could be an option. Yes, I had to take care of myself, but I cold not see in any way how forcing my body to accept something that made me so sick to bring a bout a positive outcome. Taking care of my family far exceeded the misery I felt.
I lost 14 pounds over Christmas holiday and have only re-gained about 2 of that. It's been several years ago and the weight is still off. Doesn't really sound like a bad thing, does it?
After making a break for it, I reported to my neuro that I really didn't want to be medicated at all. He didn't like that decision. I didn't care.
He wore me down, though, and a few weeks later I was back to shooting up; this time with Copaxone. The home nurse admitted that I as obviously a pro during our initial instructional meeting. I stayed dedicated to Copax until the injection site reactions became far too much for even this pain warrior. Welts, itching, even a little blistering. Not good.
This time I left the world of medicine without telling anyone. and I have remained "drug free" for site some time. I do have an affair with Ampyra (the walking drug) that I refuse to give up. that's another story in itself, but really not relative to today's post.
Now, months...no, years...later find myself face-to-face with another option. At this point, I am fully educated on the treatments available; not because I was versed by a professional, but due to my own research. At a recent MS Summit I learned learned about the vast assortment of MS treatments. I was amazed. Now, some of you will scoff at my naivete. You just go right ahead. For years I blindly followed the direction of the medical authorities until I finally took the initiative to really look at the MonSter. I mean, this is my disease. This is my demon. I have every right to know all there is to know about MS. I'm just a slow learner, I guess.
So, like purchasing a new car, I have devoted many months really delving into the options out there for me. I actually had decided to remain "drug free" until I overheard an MS pal comment on the fact that even though we might currently feel confident in that resolve, the brain is still being attacked. It is our responsibility to do whatever we can to combat that.
Yes, MS Warriors are guinea pigs. Of that there is no doubt. But it is absolutely necessary for us to test drive as many treatments as we can in order to find a cure.
I don't want my brain to die any more than it already has. At my age I doubt it really matters in the big scheme of things, but I have a lot to live for right now. I want to see my son become a famous game designer. I want to write a few more books. I want to meet Oprah Winfrey and pitch my story. I want to visit the Today Show (outside, in the crowd on a warm spring day).
Yes, I still have a lot to do.
So, this week I am embarking on a new chemical journey. While I was so excited about an oral treatment for MS, I failed to do my research. With a renewed dedication to learning about my disease, my new neuro and I have decided the next best plan for me is Gilyena. With several friends on other oral treatments, I was shocked to discover that Gilyena was the first marketed oral treatment for MS as well as the only drug approved for children with multiple sclerosis.
The initial dose evidently requires an interesting introduction to the drug. An entire day is devoted to the consumption of one tiny pill. No it won't take that long to swallow it, at least I hope not, but my heart and other body functions will be monitored closely for six hours to evaluate my reaction to said drug. I appreciate this care.
I am to pack a lunch and bring distractions to fill my day. It's gong to be a long one. Hopefully at the end of the observation period, I will be free to return home. There is a chance that I might have to stay in the hospital for the night. I hope not. That might just severe any interest I have in my search for treatment.
But, I'm hopeful. Always hopeful. It's just another chapter in this journey.
I'll let you know how it all pans out.
Have a great week,