I am feeling a bit sore today because before I went to bed, I administered my Avonex shot that helps control my multiple sclerosis (MS). The side effects of this shot are flu-like symptoms: fever, chills, body soreness. It is not so bad considering the alternative.
My Diagnosis of MS
I am lucky with my relapsing-remitting MS. I have really had no problems since my diagnosis in 1999.
Diagnosis was a scary thing, though.
I had been working as a carrier for the postal service (where I met the second love of my life, Tom) and had experienced quite a bit of neck problems from carrying the postal bag (I thought), which forced me to make the decision to quit.
It was during the time I was working at a local university full time and finishing my degree part time when I had an unusual experience: My left arm was making a wacky movement whenever I would try to reach out for something.
I went to an older, experienced medical doctor, which I would advise everyone to do, who had me stand up and walk across the exam room toe-to-toe. I lost my balance and had to catch myself.
After running some tests and getting results to rule some things out, Doc said, “You have MS.”
I said, “No I don’t.”
“Yes you do.”
“No, I don’t. No one in my family has it.”
“Yes. You have MS, and I need to refer you to a Neurologist.” he said sternly.
I wanted to cry. Tom, who was with me on the second visit, looked so sad.
My thought: Wasn’t it enough that I lost my first husband. Things were just starting to go well again with the job and with Tom. We were even talking marriage. Now this health problem is slapping both of us in the face.
Spinal Tap and Needles
The first Neurologist that I went to wanted to perform a spinal tap to confirm diagnosis. My fear of needles caused me to refuse to return to him and turn to the internet for other alternatives. I found that the Cleveland Clinic Mellen Center was doing good things with MS research and could confirm diagnosis of MS with an MRI.
Luckily, as my Mellen Center doctor told me, there was a cancelation and I got an appointment fairly quickly. Apparently this is a rare occurence.
So I had my MRI and had my MS diagnosis confirmed. Next they told me there was good news. There was a medication that was having good results to control the disease. It was a medication made up of the same protein that is already found in your body. The MS attacks that protein-based medication rather than your own self.
Great! Things are looking up!
Then, they said, “It is administered by injection.”
Fuck! I am not getting out of this needle thing. Even my mother said, “I can’t believe that you have to give yourself shots. You were always scared of needles as a kid.” Very true. I even hid at school to avoid getting a booster shot, which actually didn’t even hurt once my teacher caught me and made me get it.
Tom the Nurse
Insurance really sucks when there are new drugs on the market, but the National MS Society had some resources that enabled me to get my meds. So, after I got through that hurdle and got my first month’s worth of shots, I had to have a nurse come to my house to walk me through administering a self injection, with an inch and a half needle, into the muscle of my leg.
I don’t know how I did it, but I did the intramuscular injection myself with Tom and the nurse as my support system.
That was the first and last time, though. After the nurse left, I refused do the injection ever again. So who dispensed my weekly shot? Tom, the nurse.
When Tom then passed away, you can imagine that it left me in quite a predicament. Who did my shot then? My sister, my friend’s husband who had once been a paramedic, my stepdaughter or whomever was around and willing to do the task. That was the situation until one glorious day when I went to my scheduled MS appointment and they told me that they now have the Avonex pen, which is a spring-loaded shot - with not as long of a needle, I might add. They were also working on oral medications.
You might be surprised, considering my fear of needles, that even though they have had a couple of oral medications on the market, I stuck to the Avonex, and I can administer the shot myself.
God bless all the people who helped me deal with that situation. Especially, Tom, the nurse, who always wanted to give the injection in my butt.