I haven’t talked about this subject here for a long time.
For those of you who are recent additions to my friends list, you may not know that my disease was the main reason I started blogging. I had rough time a few years ago, when I had difficulty explaining some of the things going on with me to my friends and family. Because this topic usually encourages unwanted sympathy or awkward silences, blogging about it was easier than talking about it, and so, my blog was born. Gradually, as I felt better my blog topics started to focus more on my sense of humor and daily adventures than on my disease. But, unfortunately, good things always come to an end, and that is kinda what is happening to me now.
So, for those of you who don’t know. I have Rheumatoid Arthritis, I was diagnosed about 13 years ago. Here is a brief explanation of what RA is:
Rheumatoid arthritis is an autoimmune disease that causes chronic inflammation of the joints. Rheumatoid arthritis can also cause inflammation of the tissue around the joints, as well as other organs in the body. Autoimmune diseases are illnesses that occur when the body tissues are mistakenly attacked by its own immune system. The immune system is a complex organization of cells and antibodies designed normally to “seek and destroy” invaders of the body, particularly infections. Patients with autoimmune diseases have antibodies in their blood that target their own body tissues, where they can be associated with inflammation. Because it can affect multiple other organs of the body, rheumatoid arthritis is referred to as a systemic illness.
I take a combo of 17-22 pills a day. In addition to that, I have one huge medication, an infusion. Right now the infusion I get is recommended to be given every 24-48 weeks. It is a b-cell suppressant. Basically it kills all my unhealthy b-cells and the hope is that only healthy cells will return.
So, I had a treatment in January, and the meds should still be working well. But, they aren’t. I am not sleeping well at night again. I sleep for about an hour, then I wake up in pain, stiff and stuck in a position and I have to try to find a different not painful position and try to fall asleep again. By morning I can’t really walk, can’t straighten my fingers, arms or legs out. I shuffle to the shower and stand in the hottest water I can stand for a LONG time. And during the day, normal things exhaust me. Standing, walking, sometimes even sitting. All my joints feel achy… like a humongous bee sting in every part of your body that bends. It wears me out. Sometimes it even makes me feel nauseous.
But, at this point in my life, I am used to this happening. Typically, around the one year mark of a new medicine, it starts to not work as well, or not work at all. So, on some level I try to remain hopeful that the newest medicine will work, but on another level I am always preparing myself for the time when it doesn’t.
I am not saying all of this to get sympathy… please don’t feel sorry for me, I super-duper hate that. I just want to explain why I might be saying I feel like shat more often… or why I might not be around as much blogging or commenting. I will have to rest a little more… so don’t freak out if I go MIA for a few days. (You better miss me though!)
Anyhooooo, my next doctor appointment is Thursday, so all of this junk is weighing heavily on my mind. My anxiety ramps up before the appointment… because I do enough research to know that my options at this point are extremely limited. So, errrrr, maybe keep your fingers crossed that my research skills suck and the doctor will have some better treatment options than I have come up with.
And as always… if anyone has questions, feel free to ask. I am not sure how much people want to know, or how much they may know already.