"The Medical MonSter"
I wonder if I never smoked marijuana, would I have felt the wrath of MS? Yes, of course, I was just having a personal pity moment and thought I would try to find all the reasons, excuses and what ifs I could to justify the illness that constantly tries to take over my life.
Funny, but with the latest information on different forms of multiple sclerosis, marijuana is being debated as another means of treatment. Go figure. Being stoned during most of my aging process was a good mask after all.
I never put two and two together and got MS. It seems to have gotten me. Sometimes I chalked it up to being clumsy, too high heels, or just too high, period. Alcohol did a good job of covering things up for a while, but then I was out of control and a menace to the world. If I wanted to save my life, others, and my marriage--it was best that I stop drinking right away.
Now an occasional glass of wine gives me that old warm and fuzzy feeling, but too much makes it difficult to inject my medicine every day. The medicine that I have chosen to take makes me sleepy and helps me to forget for a few hours. The downside is the insomnia that arrives later in the week hours and the depression that follows. I am the ghost that haunts my own house!
There was that dreaded day. It was a sunny, January thaw day in 2001. I walked out of the local post office with an arm full of company mail. I tripped on the sidewalk and went down on both knees. A very nice man helped me up, I was sore, embarrassed and went back to work to open the mail at my desk. As soon as I stood up, my knee snapped and down I went again. I now had a fractured leg! As it healed, I developed a slight limp, but since it was considered a comp case; I was sent to physical therapy and saw numerous
orthopedic doctors. The limp was not getting better, one doctor even asked me why I was limping. He said I had foot drop and did not think it was a result of the fall. Month after month, test after test, and still no progress. The comp people thought I was faking, but I was still limping. I finally decided to see a neurologist. Every time I called to make an appointment they would tell me that since it was a worker’s comp case, I needed to see a comp doctor. I had an MRI even though I did not know why. Still no diagnosis. One comp doctor said, “off the record” I had much more going on than foot drop and a
After much pleading with insurance people and doctor’s office staff, I got to see a neurologist. I should say a physician’s assistant who saw me once and proceeded to call me at my workplace and tell me over the telephone that he knew I had MS.
Of course, I was shocked. nobody had ever mentioned this before, and I really did not even know what MS was. He said he would drop off some information at my home about MS plus a video on injection therapy.
Now I was really in a state of shock. My husband was mad as hell at this unprofessional treatment. What was this injection therapy? what is MS? Was I going to die? I was very upset, and my limp was getting worse. There were more episodes of falling during this time. I refused to go back so I made an appointment with another neurologist. This time I did not mention any prior history, worker’s comp or limping. I just wanted a consultation with the doctor.
After another MRI and nerve testing, I went to hear the results. The doctor took the time to explain the MRI results, the pictures made my brain look like a Rorschach test with
lots of zigzags surrounding the myelin in my head. It confirmed a diagnosis of Relapsing Remitting Multiple Sclerosis and he suggested that I begin treatment immediately. First, I needed infusion steroids for five days and then I began Copaxone injections. This was followed by intense physical therapy and lots of searching the Internet to try to understand this illness. It was difficult to go through all of this since I had just started a new job. How do you explain to your co-workers and managers why you have to take time off without pay? Most people wondered why I was limping, and I just explained it was from an old bunion operation.
I have my own exercise bike and access to a treadmill, but I’ve never been able to go beyond the warm-up speeds. I can finally walk past the end of my driveway again. If I pace myself, I can go to a mall or large department store and if I rest every so often, I can do it. A small victory considering I did not go to a mall or even a grocery store for over a year.
Had I gotten this therapy when they were misdiagnosing me with foot drop or saying I was just plain clumsy, perhaps I could have continued to walk the way I used to and not just stayed in my home. The year before I fell at the post office, I had hiked five miles in one day and was in my best physical shape ever.
So, what is the big “secret” with this illness? Why don’t doctors recognize the symptoms sooner? Why do most of us say, “I won’t die from MS, I will just die with MS.” How come
no one seems to know that you have MS until you have exhausted all your HMO referral tickets? I did some soul searching to see if I could perhaps find my own cure or at least justify that I was not alone in this. In retrospect, I must have had some indications of this Mon Ster, or was it just denial? Subconsciously I was making excuses for my behavior.
Once I stopped at a grocery store and was walking out holding a plastic bag in one hand and a six-pack of soda in the other. I tripped on that “stupid” carpet runner and crashed on my rear. The commotion caused the automatic door to open and close, but at least the glass did not break. How dare they leave those carpet runners there?
And what about the time on the dance floor with my friend, Mary. I blamed that one on my sneaker during the song medley which included the lyrics, “Save my life, I’m going
down for the last time.” Guess what? Smack on my ass! Hmmm, one might wonder what was going on.
Not to mention the time I was instructed to run across the street to a pizza shop before the light changed. Suddenly, my legs just did not want to go. From that time forward, it became a common occurrence of mine. I was walking into a mall and bam, down again so hard that I hit my head on the concrete. I ended up with a contusion and another fracture. That summer I tripped on my own sidewalk while my husband was mowing the lawn. I was so embarrassed that I could not even tell him. Then I fell just walking around my yard looking at the flowers. Blamed that one on a sinkhole in the lawn.
Should I continue? Any idiot should have seen a pattern forming here.
Maybe not. MS is so hard to diagnose. It is missed so often and for so long. It took almost six years for me to discover my MS. I had test after test, B-12 shots, thyroid imbalance, bone loss, seeing a shrink, just clumsy, then top it off with a tetanus shot for all the constant falls and what do you get? I think maybe an MS salad bar with unlimited visits.
I tried to think as far back as I could to see if I could remember the first time I fell, and it wasn’t for any good, logical explanation. At first, I thought it was 20 years ago, but then I realized it was way back, long before then. The seventies, a time when I still worked in the city…the old high heel days and I remember tripping on the sidewalk during my
lunch and blaming the “stupid” city sidewalks.
Then I thought some more, back to the sixties, remembering my eighth-grade graduation and my legs giving out on me and down the thirteen stairs in my house I went…on my knees. Let’s not forget the fifties when I would run outside to play and crash, skinned knees again. Everyone said I was just “being a kid.”
I have tripped the light fantastic on so many carpets, made many a missed step, and just plain, “oops” that I have lost track. I figured it was just being clumsy, but I think it was the MonSter rearing its ugly head.
I’ve resigned myself to being In Valid and Deferred Indefinitely, which are two silly titles I have become attached to along with MS equals Many Smiles. A sense of humor is what makes the craziness more manageable.
It is now year number nineteen since the diagnosis. I have not fallen in over a year. It was just an indoor one in my own kitchen, tripping over my own feet. I stopped taking the Copaxone nine years ago. Even though the neurologist said to stay on the medicine no matter what. I felt like a poster pincushion for MS. My hips are sore, the scar tissue is intense. The daily injection needle made diabetic insulin needles look like mosquitos. My balance is not very good. I have severe vertigo some days and my memory is no longer as sharp as a tack. I no longer can donate blood. This is very frustrating since I am a universal donor. Now I am “deferred indefinitely” which is not a good addition to an already “invalid” person. I think I know a subject; however, it takes me a long time to
finish my story. Not a real good thing for someone who wants so desperately to become a writer, huh? The jokes don’t come out very well either. The punch lines sometimes are delayed for hours.
The depression is the worst, I wake in the middle of the night and I am so sad. I did not expect this to happen to me. I am now 68 years old and the reality has set in. This kind of thing always happens to someone else, right?
Believe me, I have thought of every reason for this not to be my handicap, but it is just that…mine. I do know one thing, every day that I wake up and see the sunrise means I have a reason to be here.
Joanne writes creative nonfiction and humorous stories. She retired from a technical school business office and enjoys reading, gardening and classical music. Joanne was diagnosed with Multiple Sclerosis in 2001.