Long Story Short

I'm watching a series on Netflix called Tales by Light. It's about photographers that travel the world and take once in a lifetime photos. By the end of the first episode I was bawling. Not just because the imagery and sentiment coupled with the end music was moving, but because I haven't been able to venture out into the world with my own camera in about 1.5 years.

As you may have guessed already by taking a gander around the links and title of this blog, I have Rheumatoid Arthritis. I've always hated that it's called that, by the way. It's so much more than joint pain and gets grouped with osteoarthritis by everyone that hasn't dealt with the disease. Osteoarthritis is caused by injury and age. Rheumatoid Disease is caused by your own immune system attacking your body. To include every part of your body. You have joint destruction and pain, but you may also have brain fog, heart problems, teeth deterioration, skin nodules, joint deformities, jaw misalignment and insomnia among a list of other problems. But still when I tell someone that I have RA I have to mentally brace myself for their next statement. Here are a few I've experienced; "Oh, I have a little of that", "Like what old people have?", "My grandmother has that", "Aren't you too young for that?", "Have you tried bone broth?", "Have you tried Autoimmune Paleo?", "Have you tried shark cartilage?" and my favorite, "Jesus can heal you".  Here's the thing; Unless you also have been diagnosed with RA, you shouldn't comment. Maybe just ask, "What's that like?" Or say that you have no idea what that's like. Or be sure you know exactly what RA is before saying someone you know has it. That's fine if you want to tell me all about your friend that has it. But don't mistake it for OA. And don't make suggestions on how I treat it. I've had my fill of that and you just might find out how hard a person with bad joints can elbow you in the face.

My journey with this disease started shortly after my 21st birthday. I was living in Lincolnton, Ga and working at a friend's preschool. I got very sick with something that was going around at the preschool. My temp went up to between 104 and 105. I didn't have insurance, so I didn't go to the doc. My Mom brought me some antibiotics. I eventually felt better and tried to go back to work. My ankle swelled shortly after. I didn't know what was wrong. I had broken up a fight between a wandering dog and my little pug recently by using my foot to scoot the bigger dog off mine. I knew of the dog and didn't think he'd bite me, but I wasn't putting my bare hands in between them to find out. So I used my sneakered foot to push him off. I didn't strain it, but it did pull. So when my ankle swelled a little while after I thought maybe that was why. When it didn't get any better I went to the hospital. They gave me meds for the pain, some crutches and told me to stay off of it for a week or so. They hadn't seen any break in the x-ray and said I may have pulled tendens. Long story shortened slightly, I ended up seeing several docs before being diagnosed by an Ortho and sent to Dr. McGruder at MCG in Augusta, GA. By this time both knees, my ankle and several smaller joints were swollen, painful and frozen. I was in bad shape. My Rheumatologist said I was his youngest patient and my disease was more aggressive than he'd ever seen. Gee, what do I win? Answer: Low dose chemo in the form of a pill called Methotrexate among other drugs. All of that was back in January-March of 1998.

Fast forward to my 39th year of life. After 18 plus years of being on drugs like Methotrexate, Enbrel, Plaquinil, Celebrex, Folic Acid, and a laundry list of others along the way, my body started to shut down. My skin looked like I had been burned or beaten. And I felt like I had. My eyes were swelled shut and my body felt like it was covered in ant bites. The itching was the most miserable experience of my life. So much so that I prayed for death. You have to put yourself in my position. I didn't sleep. I cried constantly. The constant itch was maddening. I sat with ice packs all over my body. I didn't know what was happening. I saw doctor after doctor and they just wanted to cut into me. None of them actually listened. I was at the end of my rope with no hope of healing.

To be continued...

This blog post was written and saved as a draft in August of 2017, and finally published on April 20th, 2018.