I'm going to be honest with you. I'm not making this post to have any sort of moral or meaning. I'm not making it to share a success story. I'm making it because this is something I'm having a hard time with and writing here is how I figure things out. This will probably include a lot of complaining and processing. Fair warning.
I've talked a little bit about how I've been told I have Ehlers-Danlos Syndrome (EDS). It's a connective tissue disorder. We believe I have Hypermobility type and so my main problem right now is that my joints don't want to stay in place.
I've only been dealing with this for four or five months and I'm not going to lie, it has been hard. I'm 19 years old and being told I have a chronic illness. I'm being told that there's nothing that can be done. I'm being told that I need to learn how to live while being in pain. I'm being told I could end up in a wheelchair.
I've been seeing doctor after doctor hoping that someone can help me. These past two weeks that has made it worse actually. I was told that i needed to see a rheumatologist and a pain management doctor. I finally got in to see a rheumatologist last week only to have her tell me that she won't take me as a patient because there's nothing to be done for the disorder I have. Then I saw a pain management doctor on Monday.
It's funny. When I got the appointment set for this doctor I was so incredibly excited because I honestly believed that he was the person who could help me. I became increasingly discouraged when he told me he wasn't going to go forward with treating me, that any treatment side effects would be worse that what I was dealing with, and that all I needed was to exercise more and learn how to live with the pain.
The rheumetologist is setting me up with a doctor at UCLA, and I'm seeing a geneticist there in August. It just seems like everything is so out of reach. In the last month I have seen three specialists in Bakersfield in three different areas of medicine and they have all told me there's nothing they can do. I don't really know where I go with that.
I had been holding on to hope before this last appointment. I had been holding on to hope that my body could get better. I've realized this week that my body is never going to get better and it will probably get worse.
I know there has to be a way to treat this, to find at least a little relief. I know that I just haven't found the right doctor yet. I've made it through so many hard things in life. I know this will be just another obstacle. I have faith that there is a reason for this. I do not know it yet. I might never know, but I know there's a reason. I just need to remain faithful.
The one thing that has been my saving grace this past week is that on Sunday I started learning how to crochet. It has helped me. I have to be careful because it can make my neck/back hurt and I need to be careful with my wrists, but I love creating. It's been very calming.
I guess that's it for now. This isn't a very put together post. I don't mind. I needed to just get all my thoughts down. Congratulations if you made it through all that rambling. Good night.