Struggling

Sorry that I have been absent for a couple days. I have not been feeling the greatest this past week. Hell, this past month, really.. 

For about 7 weeks I have been on chemotherapy. Methotrexate, orally. I started out with one pill a week for 2 weeks, 3 pills a week for 2 weeks and then I started at 5 pills a week. Which now is my my second week of that. It has definitely taken its toll on my body.

To be completely honest, I don’t know why I am on chemotherapy. Other than the fact I tested positive for Human Luekocyte Antigen B27 (HLA B27). That can be anything. Psoriatic Arthritis, or Ankylosing Spondylitis, Reactive Arthritis, or other arthritic autoimmune diseases. I do know I fit the symptoms for PA, and AS. 

I am awaiting further testing from my rheumatologist. Have to have x-rays of my spine and lower back. After the x-rays, comes MRIs to fully diagnose my HLA B27 mutation. 

In the meantime I have to take the immunosuppressive drug. I used to have thick hair, that has thinned out quite a bit. Which is severely depressing. What’s more depressing is that I am struggling to find out what is going on in my body. 

Here is a picture of about how much I lose in the shower, every time. 

I know it may not seem like a lot, but to me, it’s a scary thought. I don’t know how long I will be on chemotherapy. I don’t know how long my hair will hold up, even with taking folic acid 4x a day. 

Body Pain…ugghh

I have been having widespread pain for about 4 years now… By pain, I mean debilitating pain. The pain where you can barely move let alone get out of bed sometimes. 

I have been on 3 different pain medications. First one was Tramadol, it only worked for so long, then gave me headaches. Second was Norco, stopped working for pain, they increased the dosage, had severe stomach pain after that. Now I am on Percocet, 3x a day. It’s starting to only work for an hour at most. Then after that, I am screwed. 

Some might say, “those are harsh opiods” or “damn that’s a lot for one day”… I want you all to know that yes, they are very harsh on your body and can be addicting to some. My next step is likely morphine. Sounds completely insane, I know. 

Here is what I take pain medications for:

• Ehlers-Danlos Syndrome (connective tissue disorder)
• Fibromyalgia
• Arthritis of many types some still yet to be determined by blood work. 

I am 28!!!! I used to be physically active. I ran a lot, I was in track, marching band, and cheerleading. (How I don’t know. Literally the clumsiest person. Ever.) I thought maybe all the activities I did in school may have been the cause of my issues. 

Boy, was I wrong… My gene’s are mutated at some points in my chromosomes. I did not know I had a genetic disorder, I did not know it would cause so much debilitating pain. I go to physical therapy for EDS, but so far it has only flared my fibro up. 

I have the joints of an 80 year old….ugh. 

My body is literally falling apart. 

This constant pain is like surviving a rollover accident and feeling like you got ran into by a train. (I’ll get to my rollover in a different post)

P.S. there is no cure for EDS, only treatment.