I have had arthritis since I was a small child. Most people do not think that you get it until you are older. SURPRISE!
For me, it started in an ankle and progressed to almost every joint in my body. Before it got that far, I developed my first patch of psoriasis (the “p” is silent). It was on my face. (Lucky me!)
Back then there weren’t many medicines so my mom was given a choice to either give me baby IBprophen or gold shots. If she had chosen the gold shots I would have never been able to stop them… I have never heard that given as an option since then so they must have been scraping the barrel for that one.
I started with a rheumatologist and not I also have a dermatologist, several specialized orthopedists, an oncologist (because why not??) and I am pretty sure I have forgotten some.
I had my first surgery when I was 14. It was on my jaw. I had braces and they used rubber bands so that I could barely open my mouth. That was just before I started high school.
During my senior year, I had surgery on my right foot. And the summer after I graduated I had it on my left foot. I started college on a roll a bout. I could have had more surgeries on them but we didn’t.
Later on, I had a minor knee surgery and then about three years later I had some tingling in my arm that let (luckily) to the discovery of a brain tumor. The doctors cannot say that my diseases cause the brain tumor or that the medicines I take for them did. They also can’t say that they didn’t.
What Started in an ankle and one patch of psoriasis now affects most of my body.
Those lovely TV commercials that advertise medicine for arthritis or psoriatic arthritis make it seem like all you have to do is take this and it will get better. Then you just have to hope and pray you don’t end up with one of the MANY side effects… some of which are worse than what you are taking the medicine for in the first place.
My body is so awesome that I take something once and it might help but the next time my body has adjusted to it and gone back to making me miserable.
I have tried most of the medicines. Some work well for my joint pain and others help with the skin. Nothing has “worked” completely so the search goes on.
I used to get clear in the summer when I was out in the sun a lot but that doesn’t seem to be happening anymore.
I went to the doctor today and she says that my hands look worse but even if they are they can’t really do anything because I am already taking medication. She can have x-rays done but again it won’t change anything.
It’s not the first time I have felt a little helpless. In 2015, I was lectured by my best friend about taking care of myself and changing my diet. I did for a while and though I didn’t notice a change in my disease I did lose weight.
Losing weight is supposed to help. My very nice dermatologist says he knows it is hard to lose weight. Maybe what I need is a doctor to say “Hey, is this the life you really want?! I am trying to help you but it isn’t working so what are YOU going to do about it??”
I started this blog to see how blogging was and because the consensus was it was more interesting to people than books (debatable!) I thought writing about a disease that isn’t really helped by medicine would be depressing.
Maybe it will be depressing BUT I need to do something. I need a hip replacement and it will be easier if I am not overweight. The Paleo lifestyle helped me lose weight. That is a start. I do not really know how to cook but I am going to try anyway.
I try not to complain and this whole post seems like complaining to me but that is not my intention. This is a decision. This is my I have had enough.
Tomorrow is day 2.
Any of you out there ever been where I am?