Nov. 14, 2010

 My husband and a very dear friend of mine suggested that I begin to journal about my past and present experiences with my Rheumatoid Arthritis diagnosis. I have thought about it, and have decided that they are right. I think ppl will learn from my experiences with this disease as it progresses.


Nov. 14, 2010.
I was diagnosed with RA on Aug 4, 2010. One day before my 32nd birthday. But before I go into what has happened since then, let me explain what has happened leading up to that day.

I have always been an athlete. ALWAYS. I ran track in high school and college, basketball and soccer in high school. I started playing soccer again when I was 21, AND I LOVED IT. When I was 22, my left forearm swelled for no apparent reason. It was painful to touch, red, and literally looked like a football. When I went to the dr, they couldn't find anything wrong with me (or so they said). But they decided to do a bone density scan on me. My bones came back as a 57 year old woman. at the age of 22...They told me to take calcium and sent me on my way. They did not check me for anything else. that was it. that was my visit to the dr. So, the swelling eventually went away and I sucked it up (the pain that is). Then it happened again. This time in my knee. I went to a new dr. Thinking he was an internal doctor, he would do something different... He was what I call a "door knob" doctor... You know the kind... They have their hand on the door knob the whole time they talk to you. Yeah, that was him. He put me on VIOXX. And honestly, it worked for the pain. Then they took it off the market due to heart and stroke issues. So I was left to "suck it up" because I had to be a hyperchondriac... or atleast I thought. I was playing soccer 2-3 times a week. My crawling up the steps after a game had to be because I was out of shape or something, right?  So, I continued to pop Ibuprofin and tylenol. My husband at the time was such a trooper. He loved going to movies, and my knees would swell twice the size just sitting there for those two hours. He got to the point where he would get me those self adhesive knee warmers to wear just for the movie. I was in so much pain that I didn't want to go anymore. Through the years, I continued to crawl up the steps and soak in the tub after a game. And I accepted it because maybe i was a hyperchondriac, or just out of shape.

By the time I was 31, then the exhaustion came and symptoms worsened. I'm not sure if the exhaustion got worse or I just became more intuned with my body's needs but boy did it hit me hard. I got a new family Dr. This family Dr is AMAZING. He actually listens to me, sits down (no door knob dr here) and we talk. I've always been afraid to tell my dr's how I feel because they never listened to me before, they were so worried about getting to the next patient, instead of treating me. My Dr now listens to me. So when I started to tell him all of my symptoms, he was genuinely concerned. My fatigue had been going on for a while now, my cholesterol and triglycerides were (and still are) out of whack, I was in a lot of pain (knee, ankles) and I wasn't healing very fast. AND i was ALWAYS sick (bronchitis with asthmatic symptoms). I sang my daughter a song every night, there were times when I couldnt sing because I was so sick. I cried myself to sleep those nights along with other nights from pain.

After about 6 months of being on and off depression medication, fatigue worsening and a knee surgery. My Dr was growing concerned. From about May of 2010 through my diagnosis in August, we did about 6 rounds of bloodwork and different types of testing on me to get to the bottom of my issues.  My worse days were in July, 2010. I was at my lowest point when I had to go down our steps on my butt. Literally, on my butt. I couldn't walk. I felt so helpless and LAME. Who has ever heard of a 31 year old, active woman not able to walk down steps??!! I couldn't go up either. I had to pull myself up or go up on my knees. Mind you, I was still trying to make a come back to soccer after I had my knee surgery in June 09, and after a VERY bad ankle injury in January 2010 (all my tendons were ripped). And I still was not healed. But darn it, I LOVE soccer. It is my outlet. And I want(ed) to play so bad. I tried to play a couple of games but it hurt to run so much.

This is when my Dr finally called me in and said to me "I think you have Rheumatoid Arthriitis. I"m not a specialist in RA so I'm going to send you a local RA Dr to do the diagnosis" Talk about scary. I had to wait to weeks for that appointment. All the meanwhile, looking RA up online and what it is.. Basically saying to myself "yeah, this is it. FINALLY an answer".In between the two Dr's visits, my family Dr prescribed me prednisone 15 mgs a day. THE PAIN WENT AWAY. I WAS IN HEAVEN. I actually remember running up the steps to the back porch and being thrilled that I could do that with NO PAIN!!

Aug 4, 2010.
I was nervous to go to this appointment. I walk in to the Arthritis Clinic and I'm the youngest by 30 years. I say to myself "this can't be it? Am I in the right place?"  When I finally meet the Dr, she examines me, looks over my paperwork and says "Yes Tonya. You have Rheumatoid Arthritis. Your bloodwork is testing a low positive but still positive. We will need to start you methotrexate and 5mgs of prednisone.

If you know me, then you know i'm the "research queen". When I researched methotrexate, I literally sobbed. The side effects of this drug were so scary. I cried when i took my first dose of methotexate and it made me sick. I threw up all night. I called the dr the next day and asked for something else. Oh, and the prednisone stopped working. 5 mgs was not enough. I had to increase it back to 15mg a day. The RA Dr prescribed PLAQUINEL. I tried it for about 2 months. It made me exhausted. We cut the dose back, not tired anymore but then I couldn't move my right wrist. That was a RA problem. We had to go to the methotrexate- again.  This time its an injection that I give myself every Sunday morning. I HATE needles! lol  and I hate this medication but the benefits outweigh the cons so I will take the medicine, and curse the whole time.

Now for my mental status through this whole ordeal...
Scared of the unknown, scared that my life span is automatically shortened bc I have RA,  depressed that I may end up crippled, depressed that I can't keep up with my kids, depressed that I won't be playing soccer anytime soon, , mourning my healthy body, angry, Pissed that I can't do anything about it. People say "stay positive" and I get that... hopefully that will come with time. But i was just diagnosed with a chronic disease. The word "arthritis" being attached to it, is misleading and people look at me and say "its just arthritis". I get so upset when ppl try to talk to me what what they THINK I have. Do some reasearch, and then come talk to me. As you can tell, this is the anger coming out about this diagnosis. I'm not happy about it. I'm scared. We are taking out kids to disney in march and I'm afraid I' won't be able to keep up. Will we need to get me a wheelchair bc i'll be so tired?? John tried to make me feel better by saying "yeah but then we'll get moved up to the front of the line!" :) that is funny... and i know he is dealing with this too.  I can't imagine being told that he has a chronic disease that is going to shorten his life and will more than likely kill him. I can't imagine. And i know my mental status is effecting him too. I'm not a happy camper right now, i'm moody (thanks prednisone), I'm gaining weight (again, thanks prednisone) and i'm scared.

I plan on writing in my "journal" atleast weekly, maybe more. Feel free to follow. :)

 t