I started my day by scrambling to get to a doctor appointment that I forgot I had. Normally I’d just…not go…but this is a neurology appointment, and they’re actually really important.
All 3 kids went to see their neuromuscular doctor the other day, and that was a loooong day. We spent almost 6 hours in the car in total and it was brutal. It’s usually closer to 4 hours total.
The appointment went well overall, but there are some new concerns. My 6 year old is the most concerning health wise, while my 4 year old has significantly more muscle weakness and overall strength. The baby is ok so far, just showing signs of low tone. But it’s hard for a 4 month old to be too delayed just yet. Time will tell with him.
I’ve been having a lot more pain and issues related to my genetic disorder lately as well. I’ve always said that I never wanted pain to control my life, and that I would always be “better than the pain”, but lately, I’m thinking that maybe I deserve to…not be in pain all the time.
I’m still breastfeeding, so medicine isn’t an option for me right now, but my doctor has made it clear that that’s probably the best option for me down the road.
I’ve always kind of felt like maybe I deserved the pain I have. Or maybe, if I was “tougher” than it, it would prove that I’m strong. But maybe that’s bullshit, and life just sucks sometimes, and I got dealt a shit hand. I still feel like I deserve it. Like I did something so bad in my life and this is my punishment for it. I know that sounds weird, but it’s just always how I’ve looked at it.
But I don’t want this. I want to function better. And hey…maybe if I’m actually medicated and dealing with my pain and my issues stemming from my genetic disorder…maybe then I can stop self medicating so much.
Anyway. My appointment went well, and now I’m waiting to get a bunch of labs done because my doctor thinks I have arthritis and neuropathy. No, I’m not 65, I’m 28. But my body is giving up, and that sucks.
It’s always strange to me being SIGNIFICANTLY younger than anyone else in the waiting room. When my brain isn’t telling me that I want to die, I also hope that I get to be old.
I really don’t want to have health issues. It’s scary. And it’s scary knowing my kids will die from this as well.
I just really, really hope that it isn’t during childhood. But the prognosis for them isn’t good.
I guess I really need to focus on making each day a good one. I’ve been spending a lot of time hating my life, and I think I need to just slow down. And find the moments to enjoy.