I think the spring of 2005 through the summer of 2006 was the worst year for me (and my husband) physically, emotionally, and financially. It was the first time that my MS was, for the most part, out of control. The year felt like one long, continuous relapse.
Before this time I had suffered yearly relapses (between April and July) that were annoying but not severely debilitating. I was able to work part-time and we figured this would be the plan of action, since we knew I probably had MS, and part-time employment I could handle. Ultrasound, which I was trained in and with which I made the best income, seemed more and more like an inappropriate career choice, even part-time, because it involved little sitting or possible breaks in the schedule (contrary to movies and TV, ultrasound techs often scan on their feet to get the exams moving along and keep the pace. Pregnancies aren’t even leisurely exams.)
I began volunteering the year before at a local library, helping to reshelve the books. I did this for about 2 hours a day, 2 days a week. I was a paid shelver for about a month, then hired as a part-time library assistant with some evening and Saturday hours. The schedule was good for me at the time, and I really found an environment that worked for me. So when April of 2005 came around, almost a year after starting there, I was floored when I developed double vision. This clinched my MS diagnosis, and it started my involvement in a medication clinical study. It also began my struggles with working outside of the home.
In May of 2005 I started the study, and was given Betaseron, an MS disease-modifying drug. The study was basically comparing Copaxone, another medication, to Betaseron (regular dose), and Betaseron (double dose.) The theory was that, if tolerable, a double dose of Betaseron would be twice as effective as a regular dose of Betaseron or Copaxone. I knew I was on Betaseron, but I didn’t know which dose I was taking. Side effects for Betaseron include flu-like symptoms such as fever, chills, headaches, nausea, and body aches. I had all of these symptoms as I began taking the drug. Taking Tylenol or Motrin really didn’t help, and I was doing the injections every other day. Somehow, during all of this transition and while suffering from left-sided double vision, I was able to have my family cart me to work and back. Surprisingly this first month was not when I missed the most work.
The summer came and the double vision very slowly resolved itself. I found a way to turn to my left and not glance out of the corner of my left eye. This relapse did not fatigue me, so I went to work and did the best I could, and disclosed my diagnosis. Everyone was very supportive, and I learned that one of my immediate coworkers also had MS, although a milder version.
The clinical trial involved lots of blood work and constant evaluations. My balance and walking were always checked. Meanwhile, over the summer, I started to really feel lousy from the side-effects of the Betaseron and new emerging symptoms. I was developing a tightening around my torso that felt like a really strict corset. Sometimes it took my breath away. The doctors just recorded the information. Towards the end of the summer, the library director, one of the best supervisors I’ve ever had, gave me unpaid leave to try to rest up and feel better. I took about a month off, but I was still having problems with pain/burning/tightening in my ribcage area. Even sitting down would trigger pains. I was running to the bathroom a lot, because food was going right through me. My old symptoms were starting to rage as well. The doctors at the clinical trial just kept recording everything.
In the winter of 2005 – 2006, I was back at the library, with a slightly reduced schedule. One day I felt quite dizzy. This was new. I had never experienced vertigo before. It was horrible. When I went back to my doctors and told them this, they said it couldn’t be a new relapse. Maybe it had to do with migraine auras (from which I didn’t suffer.) All this was recorded by the doctors, but they didn’t treat the vertigo or do MRIs to see if I was having a new attack. Meanwhile, I was so sick from the dizziness and a new fatigue, I again missed a lot of work. In February, my boss had to let me go due to excessive absences due to MS. She wrote me a letter of explanation for the future, citing my inability to work my scheduled hours and not my performance (which was “excellent”) as reasons for termination. This would become evidence for my future disability case.
I became depressed that I couldn’t work. It was the first time the MS had really stopped me from keeping even a part-time work schedule. It is the worst feeling to want to do something, but having your health prevent it. I was also missing a lot of family functions and outings with friends. I was getting frustrated with the clinical trial too, because I felt that the doctors were minimizing my problems. It was as though they didn’t want to admit I was having a new relapse because it would mess up what they were trying to prove in their study.
Things were about to become worse before they got better. As spring 2006 arrived, my old symptoms raged, the dizziness lingered, and a couple of new symptoms evolved. Time for a change as I found my current, awesome neurologist (through word-of-mouth) and learned that indeed, I was experiencing a full-blown relapse. Proper treatment with steroids would follow. At the same time, my husband was undergoing a major career change, which threw us into even more financial instability. Another new, uncertain frontier.
