LIFE WITH RA
It's been almost 3 years. This was hard to write but I figured it's time to open the door I shut three years ago.
- •First off, what is RA?Rheumatoid Arthritis - A chronic inflammatory disorder affecting many joints, including those in the hands and feet. Incurable.
- •My immune system is on overdrive.
- •It started three years ago.I started having a lot of stiffness and joint pain when I would wake up in the morning. It started simple. Pain in the knees which I connected to kneeling and walking a lot when I worked with kids or pain in my fingers which I connected with writing too much.
- •Then it got really bad.I could barely get out of bed. I could barely dress myself. The stiffness made it hard to move and any movement or pressure brought tons of pain. It got to a point where walking was painful. I brushed it off and took an aspirin every morning. I was about to graduate from college so I had a lot on my plate, I couldn't slow down. The pain resided through the day but always came back at night.
- •My mom finally forced me to go to the doctor.This is because she caught me crying when I was trying to put my hair up in a pony tail. Even that was too much. At this point, my fingers were useless and swollen. The best way to describe it is that every part of me felt sprained. One elbow was even locked up.
- •The doctor visit.I had done research prior to the appointment so I had a feeling it was either RA or lupus. I got blood tests, the dr checked me out, and I went home. When the blood work came back, I was officially diagnosed with rheumatoid arthritis. "Luckily", I was diagnosed with seronegative RA which means I have a "less" serve case. Still incurable.
- •Next stepsMy next steps were to see a rheumatologist. Our dr referred us to one close to home and I'm happy he did because he's a great doctor. He had me do all this weird stuff like walk on my tippy toes (painful as hell), squeeze some weird plastic thing with my hand (holy crap, ow), and try to grip a paper with my thumb and index finger which was impossible because of my useless fingers. I had to see him once every month to check progress. That meant blood work every time. Boo.
- •MRIBecause my elbow was locked, the rheumatologist had me go get an mri. This was to make sure it was just due to the RA. this was one of the worst things I've ever experienced. Not only was that machine loud, it was scary. I cried through most of that test. Mostly because it hit me at that moment that what I have is something to be worried about and because I could see my mom from the machine and it hurt me to know I was doing that to her.
- •MedicineThe doc started me with 9 different pills a day. It was very hard to get used to and it made me feel sick. The side effects were gnarly. This disorder already makes me lethargic but adding this medicine made it worse. Also, getting off some of these medications was awful. I literally went through withdraw. Sweats, anxiety, mood swings, nausea. The works. My appearances changes a lot. My hair for thinner, my face sunk in. I was a different person.
- •State of mind.This knocked me into a horrible state. I was always crying and worrying. I never wanted to go out or do anything. It was a hard adjustment. My appearance bothered me, I still had so much pain, I was afraid of the medication. I had to use all my energy to remain positive.
- •Family.They got me through it. I'm extremely lucky to have the parents I have. They went through great lengths to help me and I'll forever be grateful. I hate that I put them through that but I strive to get better for them.
- •Boyfriend.Probably the person I owe the most to. He would help me get out of bed, help me get dressed, help me brush my hair. - Everything! One memory I have was when I was trying to tie my shoe. Bending over was too painful so I sat on the floor. I couldn't get up once I was done, no matter how much I tried. These were moments where I would burst out crying because I felt useless. He was there to help me get up and wipe my tears.
- •Stress/temperature/illnessIf I get stressed, my disorder acts up. I'll feel random pain in a wrist or something. If it gets too hot, I have random moments of little pain. I cannot get sick!! Not only because my immune system is wacko but because it could get really bad. Pneumonia is my worst enemy. Also, cold medicines interfere with my meds so I can't take them.
- •Good and bad.Family was great, boyfriend was great. Friends...mm not so much. "Don't only old people get that?" Not really ever asking how I'm doing. Asking "what's that again?" When it would come up in conversation. Stuff like this shows you who is really there. I'm grateful for that.
- •Now!I had an appointment this week and my SED rate is down to 14!! (That's really good). I only see the dr every four months now and each time is better than the last. I have no pain in my joints at this point. I can walk and move normally. I only take three pills a day. It only gets better.
- •Luxuries.This helped me realize all the things I took for granted. Something as simple as tying your hair up or switching sides when you're lying down were the hardest and most painful things. I appreciate my mobility much more. I appreciate my health. My family. My boyfriend. LIFE.
- •I'm still lethargic all the time. Maybe I'm just lazy.