Since I have Cerebral Palsy (you can learn more about that here in my About Me page) 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 would practically get so jumpy that I swear I almost jumped out of my skin. Until I got a Baclofen Pump.
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 sharp, intense 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.
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