9 years ago today I was admitted to the hospital at the ripe age of 21 unable to move my extremities and scared to death. After a battery of tests it was determined I had some form of neuropathy. I was treated with IV medication for 7 days and seemed to respond quite well. Strength began to return to my arms and legs and I was released from the hospital with the instructions to take care of my self. Well not even a month later the symptoms of not being able to move those arms and legs came back again! Back to the hospital I went.
I did not respond well to the medicine this time. I got a little worse then a little better. Then a little worse then a little better. Some more time went by and then by the time thanksgiving came about I was wheelchair bound and unable to do anything for myself but think and run my mouth!!! I of course kept my silly sense of humor running full force, I mean as long as my lips and mouth could move we were cool! I joked with everyone that I was a hot babe looking for a date and I even came with a sippy cup, stroller (wheelchair) and my own potty chair (you can figure it out). At Christmas I was still wheelchair bound and trying desperately to keep on laughing . It was tough be I manged to keep on trucking with a gigantic toothy smile.
The illness was finally diagnosed as CIDP. What is CIDP! Well it stands for Chronic Inflammatory Demyelinating Polyneuropathy. I interpreted it as some Crap the Dr's didn't really know or understand. I was treated with different types of procedures and medicines. Nothing really worked. Or if it seemed to work eventually it crapped out and we were back at square one. Even through all this over a 2 year period, I was able to keep on trucking with a toothy smile (for the most part). I secretly would cry at night to my pillow when i thought no one knew or could hear. My dumb butt self forgot that a woman who is paralyzed from the neck down has someone close by at all times, even if she doesn't think so. DUH!!
It was incredibly difficult to watch the faces of my family, friends, and caregivers. They did an awesome job in keeping their spirits lifted around me, but man I could read them like a book. Terror seeped from every muscle in the forced smiles at me. I have to say that was by far the hardest part of being sick. Not the inability to move. Not the having to succumb to someone doing everything for you. Not the constant wondering of what your fate may be. It was watching those around you be in pain. I hated it!
We pushed my stroller right on through the holidays and in to February. On Valentines Day 2001 I made a fabulous achievements. I moved my right pointer finger ALL by myself. It was the most awesome feeling I had ever experienced. We called everyone. The nurses, doctors, family and friends, People gathered around my bed to see Michelle the amazing Pointer finger moving girl. Circus freakish I know. But it was so good to move that finger. Soon after the finger movement, other muscles began to respond. In no time I was re learning how to walk. Frustrated that I could not instantly run marathons, i struggled with sound mind through intense physical rehab.
I learned to use my extremities again. I slowly began to resume a life of independence again as well. It was joyous. I returned to college. Got a job and began to live as a normal healthy person. Well sort of. Finding the right cocktail of medication was quite a chore and not something the normal healthy person endures on a daily basis. I take an oral medicine daily and an infusion of medication at a designated time point. The infusions started out every other day. And in 9 years we have successfully reached once every 10 weeks. During those early years no one knew if I would ever walk, run, care for myself again. It was pretty much understood that carrying my own children would never be a possibility. Well here we are 9 years later and what do you know. I carried a perfectly healthy baby almost to term. I was training for a marathon (reached 11 miles continuous run before finding out I was pregnant). And I am happy and doing great!!
I know this is just a glimpse or rather a very short summary of 9 years of illness and recovery. I don't really feel the need to go into all the gory horrible details. I really just want to recognize the date and look back at how far I have come. I am incredibly happy and thankful to still be here. I am grateful for every day. And I am so in love with my daughter Amelia Grace aka Baby DIVA and Alberto My Hubbs-to-be! I couldn't ask for a better life. Even if it was rocky in the past it has made me who I am and I think enabled me to be a better parent to my daughter!