Why is it always the same thing with doctors? I have yet to find one that will listen to me.
Yesterday, I had to go see my neurologist. The first thing that I don’t like about him is how he treats me. He speaks to me slowly and names everything as if I haven’t heard of it before. When it comes to having myelomeningocele, there’s a high probability I know more about it than the doctor does; I live with it!
(yes, this is my spine…)
Being born with spina bifida is a little bit weird, it’s a snowflake effect, every person born with it is affected differently; not to mention there’s different kinds. I have what is seen as the “worst” one. When I was born my spinal cord and nerves were outside of my back in a little sac. A lot of people who have myelomeningocele use wheelchairs, but I don’t.
Since I was 17, I’ve suffered from a tethered cord. What that means is, my spinal cord has attached itself to scar tissue and is now “caught” instead of being free-flowing. It HURTS. Between this and the spondylolisthesis, I’m not sure what pain I’m feeling, so we’ll just pretend it’s neither and I actually have a little gollum in my back making stone art.
I’ve had one detethering in my life, aside from the one done at birth, and they screwed it up. So for the past 10 years, I’ve been living in physical agony every day of my life. But the good news is, you get used to it! So it isn’t always as bad as it seems… unless you try and relax.
Unfortunately, there is “nothing” that can be done for me! My doctor told me that everything I’m currently dealing with is minimal, which I can understand, but it doesn’t FEEL minimal! I’m completely fine avoiding going under the knife, but I should be allowed to live a life relatively free of pain. When I asked what could be done, he told me to take Advil and that was that.
I have tried so many pills over the years, from Tylenol and Naproxen to Oxycodone and Demerol, to things like Gabapentin. None of it has worked. I think the closest thing to ever helping has been marijuana. Luckily, where I am, medicinal marijuana is legal, but that doesn’t mean I like smoking it! Yesterday I was so ready to march to the doctor and get him to prescribe me some, but after thinking about it, I don’t even really like it. Once in a while, when the pain gets so intense I can’t handle it, I love it, but that doesn’t mean I want to depend on it for the rest of my life. I shouldn’t have to, and I won’t.
So I spent most of my day upset. No one will listen to me. It has literally gotten to the point I think I should start responding with, “let me cut you with a chainsaw and you tell me if it hurts. I’ll give you some Advil to ease the pain afterwards.” That’s ridiculous, is it not? Of course it is! Now you understand the vexation I have with doctors!
I think I’m going to try and find a pain management specialist. If no doctor wants to help me, I’ll do it myself! Like I learned from my mother and like I’ve done since day one!