Last year, to make a long story short, I had a bunch of GI issues.
Peg tube caused pain
The GI team decided to give me a peg tube. I want to be friends with it, but it's a battle. I can never be fully comfortable with it because I've been in pain 9/10 times since the minute I got it. I kept being told the pain would stop, and it never did. I had a Mickey button for years, but because I ended up needing a feeding pump, they decided that it would be best to switch to a peg tube just because a peg is supposedly low maintenance. I just have to laugh at that because nothing with SMA is low maintenance unfortunately.
I just have to say that being okay with all these changes then, and now a year later, it has been tough. I feel like people told me to just move on, but I'm still living with the consequences a year later, and things happen with the peg just when I forgot about everything and feel calm.
But no peg would be worse pain
As I write this, I recently had a cauterization and everyone said it would be painless and easy. I was expecting terrible pain, but what I got was way worse. Even though I had something to numb the area, it was awful. I put this procedure off for a while because I had anxiety about it all. But I had to do it to avoid more long-term problems and even worse pain.
Able-bodied people’s pain tolerance and mine are extremely different. I truly wish that living with spinal muscular atrophy were so much easier. I live life as fully as possible, I don't have time to be held back by something I was told would be easier.
There are positives - I remind myself
I'm definitely trying my best to remind myself of the positives that came from getting this peg when I feel sad and frustrated by all this, like how I can finally not have to worry about nighttime fatigue because I have the feedings to help give me energy!
Due to the face that I have depression, I try really hard to find the balance of my negative and positive thoughts so that I don't spiral. But I have be completely honest, sometimes you need a breakdown, you need a cry, you need to say screw you, SMA!
Trying to balance positives and negatives
Sometimes SMA is just super tough and overwhelming - and that's okay. I always want to remind people that it’s okay to hate your SMA sometimes. It can be a lot to handle, and it absolutely doesn't mean that you're ungrateful.
To myself and to the community, I hope you find ways to help yourself when you need it and to be able to cry and scream when needed, you just have to!
I love you so so much my friends. I hope that you can take care of yourself, however that looks for you.
Have you taken our SMA In America Survey yet?