Well I let life get the best of me. And writing makes things too real sometimes. But I’ve reached the point where I feel like I need to.
*This post will include a lot of NON-MS crap about my life*
First things first, I left my dead weight. I am a single woman. It sucks. But, I know I did the right thing, when he said to me “No one else could love you with your MS bullshit”.
Fuck you bro. I am human and, of course, made my own mistakes in our relationship. Who doesn’t. But NEVER my our relationship to be my diseases issues.
That all happened shortly after my last entry, and then I was given my FIRST EVER round of prednisone.
I’ve since learned a lot of people with MS get their first round of steroids shortly after they’re suspended of having MS as… If your having symptoms to seek help, youre in a flare up. Steroids end the flare-up. My doctor I’ve been seeing for 9 months now never thought to prescribe them before…
So, I couldn’t handle the first steroid round. I took them as prescribed and ended up being so nauseous and sick, I lost 14 lbs in the four days I was able to stay on them.
Not a big girl to begin with so… I was down to 95. I was scared for the first time in my life about my weight. I struggle to keep it as it is, but when sickness gets me and I lose a lot, it’s a BATTLE to regain it.
I emailed my doctor and stopped taking it. They said it was fine and we’d discuss at the next appointment
Now the next appointment was to cover how the disease modifier was working for me. I’d been suggested to take copaxone.
I had the 2% reaction of rabid heart rate and cold chills. It was probably the scariest thing I’ve ever need through.
I’ve never been the one to think, I should go to the doctor, until it’s like… Death.
I almost called an ambulance. I was terrified.
So now I’ve gone back to the doctor, and we have hopefully found another route for the steroids.
Now I’m waiting for an appointment next week for the prescreening appointment to start Gelinya.
Now for more basic life crap.
As a single woman, I’ve become a no income house again. Which is just stress on toast.
I’ve been told not to work for a year to continue on the disability thing. I hate the sitting and waiting for someone to tell me I’m broken.
Ive also noticed my depth perception is getting so much worse. I didn’t realize how bad when it was just me running into walls and nonsense. Then yesterday I was trying to help my son wipe in the bathroom, and slammed his head into the counter top.
Aside from the instant, WHAT THE FUCK DID I JUST DO TO MY BABY, I was so lost for a moment. I heard his head hit but my brain was still like, hit what? There’s nothing there.
It took me too long to grasp the counter, that had been there for my whole life, was still there and I’d just helped my son smack his head on the side. Luckily he’s ok, but… Omg talk about mom of the year.
I am doing my best to deal with my stress and hopefully not injure my kids anymore. It’s been a rough few months but hopefully I can get on top of my shit.