Since I have Cerebral Palsy, my muscles are a lot tighter than the average person’s. I’m also very spastic…a loud noise (sometimes it doesn’t even have to be loud) can happen and I will practically get so jumpy that I swear I almost jump out of my skin.
When I was 10 years old I went through testing to see if my body could handle having a medicine pump to help me deal with these issues.
Turns out I was a match for the Baclofen pump ( thank God!) Up until I got the pump, I had constant nerve pain and spasms in my legs, the nerve pain was like constant bolts of lightning shooting through my legs.
The sad part is, until the Baclofen pump, I thought that was completely normal, I didn’t really know I was different than other people, aside from the wheelchair of course. I honestly thought everyone in the world had this nerve pain and we were all just supposed to just deal with it. Guess what? I was wrong.
Ever since then I’ve had the pump in my abdomen. It’s like a tuna fish can, or a hockey puck. The pump is connected to a catheter that runs up my spine and continuously bathes my spine in medication.
Now I very, very rarely have lightning legs, and am far less jumpy, my muscles are a whole lot looser than they would be without it.
Every 4 to 6 months I go to get the pump refilled with medicine and the doctor adjust the dosage, if needed. They refill it by giving me a shot in the abdomen, the pump has a tiny rubber door and as long as the doctor hits it in the right spot it, it is easy to refill.
Every 7 years the batteries of the pump have to be replaced. Don’t want to let that slip up. Trust me, I know.
When I was probably 14 years old the pump I had malfunctioned in the middle of the night. It was such weird timing. My family and I were watching an episode of House, MD in the episode everyone was on an airplane mid-flight, when suddenly they started breaking out in red itchy rashes. My family has always called me a hypochondriac. So, when I started itching at the exact same time as the characters in the show, my Dad didn’t believe me.
Flash forward to about 3:00 AM that morning, I am in the emergency room, going through drug withdrawals, lightning legs and everything. I had to have emergency surgery to have my pump replaced.
I still tease my family about not listening to me when I first got itchy. I’m never going to let them live that one down. Ha!
Ever since that night I have the doctor check my battery percentage, every time I go for a medicine refill. I refuse to go through withdrawal again. It was one of the worst experiences of my life. itching everywhere, non stop…an itch that could not be satisfied with scratching. I remember laying in the hospital bed, praying that God would just let me die. I couldn’t handle it anymore.
So, anyway tomorrow it is time to get my batteries replaced yet again. I am not in any way a fan of doctors, hospitals, or surgeries. I have major white coat syndrome.
So if you could please send prayers and positivity my way for tomorrow morning. I would really appreciate it. Surgery is at 7:00 AM.