To everyone around me, I look and act fine. Going to work, exercising at the gym, socializing with friends- these are the things that keep me going. Having been diagnosed with MS in 1998 with no significant relapses for years allowed me to live in a sort of denial. I say "sort of" because it is hard to deny having the disease when I gave myself an injection once a week. This shot was supposed to help reduce the number of exacerbations, which it did for a long time.
When I recently fell out of remission, I was terrified. Over one week, the right half of my body went numb. I was walking with a limp. This was a big problem because I lived on the third floor and there was no elevator. Falling up the stairs made me angry. I worked so hard, expended so much time and energy, and spent thousands of dollars to control this disease. Wake up call: this can't be controlled. The progression can be slowed, but putting all of my faith in just taking one shot and exercising was not enough.
During late June, I went through a series of tests. It took two weeks to receive the results. When my neurologist called me late at night I knew something was wrong. I waited for her to tell me how bad it was. She began with, "Well, this is very disappointing." My heart started pounding and tears filled my eyes. She told me that my 2003 MRI shows significant worsening when compared with the 1999 MRI. I feel fine right now, but I have something called a "hot spot," or an active lesion, plus many new lesions. To describe it flippantly, my brain is actively eating itself. To put it bluntly: I am not in remission.
I expected some bad news, as I had an exacerbation during the entire month of May, but it still came as a shock. When I felt good for so long, I started to believe that this disease wasn't so bad, that I could control it. When I got sick, I couldn't stop myself from believing that I may have caused the exacerbation. Now I know that isn't possible, but I couldn't stop questioning myself. Before May, I had been exercising every other day, pushing myself as far as I could go. I walked out of my health club dripping sweat each time I left and felt that I was doing the right thing for myself, not considering the fact that heat is bad for people with MS. I questioned my schedule, which consists of twelve to fourteen hour workdays. Stress is also not good for people with MS, and that schedule was a source of great stress. I felt guilty for relapsing.
It has taken two months, but I believe that my exacerbation wasn't my fault. My doctors, family, and friends were there to encourage me to reread all of the facts about multiple sclerosis. I had avoided doing so, knowing that some of those facts were bleak. Reading it again, I tried to find not just facts, but success stories. Yes, I did find the horror stories, yet I have tried to embrace the success stories. Stories about women having careers and families cheered me greatly. Those stories helped in my decision to take a more aggressive approach to dealing with my disease.
I had taken Avonex, an interferon drug, for five years prior to this recent relapse. Avonex is an interferon 1a drug injected intramuscularly once a week. Its purpose is to slow the progression of MS by reducing the number of lesions, which in turn reduces the number of exacerbations. My 2003 MRI results showed that this drug was not working.
My doctor then recommended that I look at two other drugs, Betaseron and Rebif. Both drugs are also interferons, but Betaseron is an interferon 1b drug, while Rebif is an interferon 1a drug like Avonex. I felt lost but determined to choose quickly. I called the drug companies and spoke to their representatives. Each company provided a kit describing their medications. I pored over these kits, watching each movie, reading each pamphlet, attempting to decipher the meanings of some of the side effects, and in general driving myself insane.
In the end, I chose
Betaseron because it has stood the test of time. When I began taking
Avonex, it had only been on the market in the US for two years. The long-term
effects were not known.
Rebif has only been approved in the US a short time, and I could not find any
research on the long-term
effects. I wanted something proven to work over the long haul. Now, the
side effects can be the same as the
Avonex:
depression, suicidal ideation, anxiety, liver problems,
injection site reactions, risk to pregnancy, etc. Those are all very frightening things, but I had to weigh the
pros and cons. In the end, I chose
Betaseron. The decision was made and I called my doctor, who gave me a
prescription.
At my pharmacy, it takes between one and two days to receive Betaseron, so when I went in, I was ready. Well, ready to pick up the medicine, but not ready for the price. When the total came up on the register, I said something to the effect of, "Oh my God, you have to be kidding," and numbly handed over my credit card. I was used to paying quite a bit for Avonex each month, but was still surprised at the huge jump in cost. I now accept that you get what you pay for, and hope that it is worth it.
With my new medicine came new paraphernalia. I use the term paraphernalia because I now feel somewhat like a very organized junkie. My bathroom cabinet is full of Tupperware containers. That is not something unusual, but if you look closely, you will see the term BIOHAZARD on some of the Tupperware. Some containers contain syringes, each stored according to size and gauge. Others house cotton pads, alcohol pads, and little Band-Aids. Every other day, I go to this cabinet to collect the things I need to administer this medication.
Using Betaseron is a process. The medicine must be reconstituted before being injected. To do this, I have to draw 1.2 ccs of sodium chloride into a syringe. The sodium chloride is then injected into a vial which contains the interferon beta 1b. Once that process is complete, it is necessary to check the color of the reconstituted solution. If it is not clear, it must be discarded and the process repeated with two new vials of the sodium chloride and interferon. After checking the solution, 1 cc of the reconstituted solution is drawn into a new syringe. The injection site is then cleaned with alcohol to prevent infection. After all of these steps have been completed, I can give myself the shot. After the shot, it is necessary to massage the injection site, followed by icing for five minutes. The last two steps are to prevent injection site reactions like bruising and redness. Unfortunately, I've developed both. The bruises may last up to two months, but I take comfort knowing that I don't wear midriff tops or short skirts, or I would probably be asked questions I don't want to answer.
I do not mean to sound cruel when I say this, but having MS is my damn business. Some people in my workplace know about it, but only those who have to know or I feel should know. When I was going through infusion therapy in May to combat the exacerbation, I had to go to a cancer center. As I left after my first treatment, I ran into a coworker of mine. The gauze wrapped around my wrist was quite obvious, and she asked me if I had cancer. I looked at her and said no. She stared into my eyes, saying nothing, asking everything. I said nothing. I turned and left the hospital praying to God that she wouldn't tell anyone she had seen me there, yet feeling bad for saying nothing. I know I am under no obligation to tell anyone anything about my personal life, but being caught at the cancer center and having no explanation for being there was difficult. I plan to continue saying nothing if I feel it necessary. Uncomfortable or not, it still is my decision.
I may be
saying nothing for a while when I begin seeing friends and colleagues I haven't seen since spring. I have been taking
Betaseron since July 22nd, and am doing well, minus the bruising. There is another
medicine in the bathroom cabinet to combat the
side effect of
fatigue, and it appears to be working. It is called
Provigil, and is commonly prescribed for
narcolepsy. Narcoleptic, I am not, but if it works, I'm all for it. I am trying to remain
positive, but I have my moments of
frustration. Bookmarking the
success stories of other
MS patients has been a comfort to me. I would like to be one of those
success stories. One day at a time, I may be coming closer.