It was on the morning of February 20th 2004 when I woke up with some numbness in my left arm and leg. I decided to write it off as I slept wrong or maybe had a pinched nerve. I got myself, my toddler and the baby ready for the day. My husband Tony had already gone to work a couple of hours earlier and the boys needed to be taken to Nana’s so I could get to class at the community college I was attending. After dropping them off, while I was driving to school the numbness was worsening and my left side started feeling heavy. I figured there was no harm in calling the local hospital’s ‘Ask-a-Nurse’.
I spoke to a wonderful lady at the hospital, telling her all of my symptoms. It wasn’t long into the conversation that her tone changed a bit and I became a bit more concerned. I parked the car and continued the conversation which ended with her advising me to get to the ER. The nurse believed my symptoms sounded like I was having a stroke, possibly in part due to my birth control.
So turned around and headed to the hospital, calling Tony on the way. He immediately went looking for his boss in the factory to let them know he needed to leave. Upon arriving at the hospital I told them all that was happening and they rushed me back and hooked me up to an EKG. My heart was fine. By then Tony was there and the hospital staff was sending me for a CT scan. That came back fine as well. Next they had me do an MRI. While sitting in the impossibly cold room waiting to hear about this final test I prayed…
…“GOD please have them find whatever this is, I know this is not all in my head, give us answers and we will deal with them as we need to”.
You see for years, even as far back as high school, I have had these odd things come and go. Pains, numbness, severe fatigue, and a whole myriad of other little things. Physicians had on more than one occasion said ‘yes you have these things but we see no underlying cause’ alluding to it may be all mental. Sitting there I was terrified that I was going to be told it was all in my head again.
When the doctor returned his face was concerned looking and he sat down on a stool and slowly began to tell us their findings from the MRI. The physician said it looked like I had M.S. (multiple sclerosis) and that he wanted to send me to a neurologist as soon as possible. I looked at my husband he looked like he just saw a terrible injustice; he looked at me with strong devotion and sympathy. I wasn’t sad, scared, or even upset. The sick thing is I was relieved. It was ‘real’ and it had a name. Granted I didn’t know anything about this disease at the time and I am sure I was exhausted from the hours of tests, but at that moment I was numb mentally as well as physically.
When we were finally allowed to leave the hospital we were both spent. Tony assisted me to car because by then I could not walk without aid. I didn’t want to tell anyone until I understood more but as it was we had to get our kids from Nana’s. So there was no choice in telling them or not. It was strange seeing the faces of my grandparents as Tony explained for me what all had happened.
Papa sat very still and listened but the old man’s brow was furrowed as if he was working on some sort of difficult task. Then there sat Nana in her chair, she looked helpless. This woman is a rock, never did she put up with anyone’s guff, and she could do anything she wanted to put her mind to. I didn’t comprehend this until years later when she told me what was going through her mind.
“I felt like the universe betrayed me, you are my first grand-baby and you were never have anything bad happen to you. I was going to make sure of that.”
There was certainly some humor that night though. My mother has always been ‘special’ in her comprehension and certainty in her knowledge. She began to tear up and pace about the room while Tony was explaining all of the events and results of the hospital trip. I don’t know why but the whole scene for me was like I was outside of it all. Watching the people in that comfortable, if not overly furnished room, as though it could have been on the television. Granted I was right there in the middle of it sitting in the chair by the fireplace holding a wiggly toddler on my lap.
That is about when my mother said,
“I am so, so sorry. You must have caught it from me and your father. Something in our genes must be faulty. It’s just not fair that my only child is one of Jerry’s kids!”
That’s when i snapped back into reality. One of Jerry’s kids? This struck me oddly funny seeing as I used to watch the MD Telethons and I knew at least this much, Multiple Sclerosis is definitely not Muscular Dystrophy. So tired as I was and mildly irritated for a reason Im still not sure I responded with a bit of biting yet giddy,
“MS not MD! GOD bless them but I’m not a telethon kid! “
The rest of the evening was unremarkable. Tony got me home and put me to bed. It would be one more long and uncertain day before I would see the neurologist. The next day I saw my new neurologist, a Dr. Bekavac. I had to have more MRIs done, with and without an injection of contrast to show active lesions. I learned lesions are scars where the immune system is attacking the protective covers on your nerves. Fun, huh? That was followed by a spinal tap, not enjoyable but if you have had an epidural it is a similar process. Instead of putting stuff in they are taking fluid out- gives you a wicked headache afterwards. The diagnosis was a definitive MS. The doctor wanted me to get on a disease modifying drug to treat my newly discovered disease.
The next morning Tony again stayed home to care for me and the boys, he also made phone calls to his mom in Manchester IA and my dad in West Bend WI. The news was met with mixed feelings of denial and disbelief. It was a lot to take in for everyone. Between the things the doctor said and all of the informational booklets about this disease I started to feel overwhelmed…and scared.
The drug treatments turned into a couple of month ordeal. A nurse practitioner would come to the house and teach me and my husband on how to do the injections. She was a wonderful woman who took her time and did her best to make us feel comfortable with the process. On the third day of the drug Rebif the nurse noticed I was developing a reaction, a bad reaction, my tongue started to swell. She shot me with and EpiPen and called my doctor to let them know I could no longer be on that drug. So a week later they switch my treatment drug to Copaxone. I broke out in blistery hives. Same as last time I got shot with and EpiPen to stop the allergic reaction. It was a few weeks after that that they had me try Betaseron. Also a no go.
My symptoms progressed during that time. On top of the left arm and leg issues my right leg was starting to go numb from the knee down and the fatigue was unbearable. My neurologist started me on a run of IV steroids followed up with oral ones. It would be years and a few trips to Mayo Clinic before I would be able to level out. During that time I went from using walkers, wheel chairs and canes interchangeably with periodic bouts of near normalcy with a smattering of steroids in the mix.
Through the days, months and years I ran a gambit of feelings-anger, fear, mourning, depression, detachment and finally acceptance. Every day is it’s own day. One day I may be absolutely fine and the next day find my limbs unresponsive. But I did learn one thing and it is so desperately important…
….you can get through more than you ever thought you could and still see their is beauty and joy even in the little things all around you.