I almost decided against this post as I try to have a happy happy blog, but in the end, I decided that it is worthy of the goal of the organizers behind this movement to carry the message.
I have Rheumatoid Arthritis.
I have Rheumatoid Arthritis.
For many years, I didn't really share that I had a disease that can have a rather bleak future.
Two reasons guided that choice:
1) I didn't really want to be a complainer or draw attention to myself.
2) I felt if I didn't talk about it, then maybe I wouldn't have to consider the destructive force behind it.
I spent time researching it because that is what I do, but I somehow hoped modern medicine would figure out a solution to it before I got to the bad stuff.
The reality is this crazy disease really works differently in all people. It is an autoimmune disease, not your typical arthritis even though is called rheumatoid arthritis.
I really like that there is a move to call it rheumatoid disease. I think that better describes it.
I remember when it hit me that something was wrong. I had two episodes that had me wondering what in the world was wrong with me. The first involved my fingers. Such excruciating pain! I remember it hurt so bad that I had trouble removing and replacing the whiteboard marker caps. (I am a retired teacher.) It passed, but I distinctly remember it. Later, my shoulder began to hurt so bad that I was sure I had done something to it. I thought maybe I had damaged it somehow with my teaching bag. I did make an appointment to see a doctor. That was the beginning.
I won't go into all the details of my journey, but rather say it is good to have a diagnosis than think you are nuts or lazy which is what you think others must think. The diagnosis explained that lethargic feeling I often felt. That feeling that was so much more than age or kids or teaching or hormones, etc.
It is funny...as a child I often had pain in my legs at night. Mama called them growing pains.
I have a wonderful rheumatologist who has guided me through the years. I have tried many of the medicines. They are beyond scary if you read the side effects, but without them...well, who knows?
I have read so much that sometimes I have to stop and remember who is control of my life.
That would be God!
The past two years had begun to go downhill for me which led me to try some alternative measures along with modern medicine. So far, so good!
There is so much to be learned as with any disease. All parts of this story don't work together. Sometimes you don't know who to believe, but I believe the answers are somewhere in the middle of the mix of doctors dispensing the standard line and those with what seem to be radical ideas.
Either way, I read both and try to navigate those waters.
For now, I will continue to take Xeljanz, eat the organic foods that are on my list, avoid gluten, sugars, and all processed food. I will avoid the toxins that I know of and drink water that is as pure as I can get. I will live life to the fullest and enjoy and be grateful for every day.
Hoping like many others with all kinds of autoimmune diseases out there that there will be cure.
Hoping like many others with all kinds of autoimmune diseases out there that there will be cure.
Blessed,
Sandy
Chronic illnesses are sad. Our family suffers with many autoimmune diseases and it is a trial for sure. I am glad you are feeling better and I hope your new regimen will bring relief for years to come.
ReplyDeleteSandy, you know I'm there with you! I'm also glad they've decided to use the term "disease" instead of "arthritis." I don't really talk about it much, but when I do bring it up, someone is sure to say, "Oh, I have arthritis too" and what they mean is they have osteoarthritis which is totally different.
ReplyDeleteHang in there, and glad to know you are doing better!