As I leaned against the bathroom wall this morning I don't think I've ever been so close to wishing I was dead. I don't ever put that into words anymore. I think we've all done it at some point in our lives, when we were young and didn't really see the value of life. We were stupid and just said what popped into our heads. But I stopped saying things like that a long time ago. Words have power.
Today, I'm close. The pain is in every joint. Nothing is helping. I spent the next several hours lying in a chair trying to sleep.
I don't know how I'm going to get through the next five days like this. I don't know how I'm going to get through the next five hours. I've tried to figure out what I did to deserve this kind of torture, because it is torture. It feels like your joints are being cooked from the inside, slowly. The cramps in my legs from the knee pain make lying down uncomfortable. And my neck, while it may look ok, is not. I can't sit in certain positions, like reading or crochet angles, so I'm constantly shifting for something that minimizes the pain and doesn't make my neck and shoulder go numb. I'm not reading or crocheting these days for more than minutes. That spreading numbness is very scary.
I've looked for all kinds of answers and I'm pretty tired of the effort. I really don't want to do it anymore. I've finally realized that there are no solutions. None.
What is even more frustrating is that I can't seem to get anyone to understand that there is nothing anyone can do to fix it. It is like talking to three year olds. They either think, because I'm up walking around that I don't have a problem or because I managed to get to work, I must be o.k. People seem to refuse to believe there isn't some magic potion to make you better. There isn't.
And I have to say when you are in pain, people tend to say the stupidest things, as if you haven't frantically searched for something that will help you. Yes, I know they mean well. Yes, I understand they are upset by my state. Yes, I do appreciate it. But to spare me any further pain of dwelling on the hopelessness of it please educate yourself on my disease. Google the hundreds of pages I've Googled.
"Do you need to go to the hospital?" No.I can't afford it and they can't do anything anyway.
"Did you take something?" No because there is nothing else I can take. I am allergic to an ingredient they put in the medicines to treat the disease. That allergy will kill me if I take it.
"Can you call your doctor?" No. My doctor knows my condition and nothing has changed.
"What about .....?" NO!
"Or .....?" NO!
"Maybe if you ...." NO, NO, NO!
Stop it already.
Believe me when I tell you that in the middle of the worst pain, I've sat sobbing over Google looking for something that will fix it. I've read medical reports and articles, I've talked to other people with the disease. I've researched alternative medical sites. I've read junk science. It can't be fixed. There is nothing I can take. There is nothing I can do. There is nothing you can do. There is no place to go, no one to see, and no one to talk to about it. You can't help me. I can't help me. The doctor can't help me.
So, I leaned against the wall, waiting for the water to get hot and said, "This isn't living. This is living death. And I don't want to do it."
I was surprised I meant it.
I put a link for acupuncture. I want to you to call one and try it. It was a mini miracle for my daughter. It is not cheap by any means but I think at this point it's worth a try. I wish there was something I could do to help you.
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