#RABlogWeek Starting Stories

I keep telling myself that I want to start an RA blog to document my experience. It only seems appropriate that I start on RA Blog Week. I’m getting a late start so this is the prompt for day one.

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My story actually starts about 25 years ago. My job at the time paid for a very extensive physical exam. After all the tests were run, they would call you in if they found something out of the ordinary. Now at that time I was exercising a lot – biking, swimming, and going to the gym almost every day. When the doctor called me in about my results he asked me if I had rheumatoid arthritis (RA), I said no. He asked me anyone in my family had rheumatoid arthritis. My answer again was no. He asked me if I had been sick recently. At that time, I hadn’t even had a cold in a very long time. As it turns out my sed rate was very high, an indicator of RA but also an indicator of infection or inflammation. So I find a doctor and tell him about the exam results. He tells me I’m too healthy to have RA. I felt very foolish and decided never to mention it again. I doubt another sed rate was run until 2015. There’s no way to know now if I did have RA then but it affected when I was finally diagnosed. I put off mentioning it to my doctor until it was very bad (I don’t recommend that by the way.) and valuable treatment time was lost. This is also one of the reasons I decided to start this blog. If one person is encouraged to pursue their rheumatoid arthritis symptoms, I’ll be happy.

By the time I was diagnosed, my hands were so swollen and painful that I could barely get dressed, prepare a meal, or cut my food. Making a fist was impossible. Up until that point, I thought the pain and stiffness was stress and getting older. Plus the pain would come and go until the day it came when it never left. My hands, wrists, shoulders, knees, and feet were very painful. My primary care physician took one look at my hands, told me I had rheumatoid arthritis, and set me up with a rheumatologist. Those days before my rheumatologist appointment seemed like an eternity. Now I’m a researcher at heart and I also work in a doctor’s office so I spent a lot of time consulting Goggle. Thankfully I also happened to stumble on this page by Jessica Gottlieb in my searches, You’ve Just Been Diagnosed with Rheumatoid Arthritis, Now What?. This post finally made me smile and relax a bit.

I’m lucky. I love my rheumatologist and her nurses. She wasted no time doing tests and getting me started on medications. I like her so much that I drive a little further to see her. On the first visit she gave me a big steroid shot, a prescription for prednisone, another prescription for folic acid, a bunch of material on RA and methotrexate, took xrays and drew lots of blood for tests. My biggest fear is that the tests would show nothing. I was so wrong. On the next visit two weeks later I had my final confirmation. All of my RA markers were very high. I started on methotrexate increasing it over the next few weeks. That first visit with the rheumatologist marked the beginning of an increasing reduction in pain and an increase in sound sleep.

Now while the diagnosis is scary enough, the medications required me to take a few deep breaths and just go for it. But really, I’ve had few major problems with my medicines and they have worked beautifully. I had some side effects from the methotrexate but switching from folic acid to leucovorin fixed that. The patient information that comes with these medicines is terrifying so it doesn’t surprise me that some people decide not to take them. I still cringe a little when I see that line “sometimes fatal skin conditions”. I’m sure I’m not the only one who had to take a deep breath before that first dose of new medicine. A few months later, Humira was added to methotrexate which helped more and gave me a little bit of my energy back. Now it’s just another part of my new life. I’m still getting used to my post-diagnosis life but it is much better than the pre-diagnosis life.

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4 Responses to #RABlogWeek Starting Stories

  1. Hi, I noticed you were unable to link your blog to the other RABlog week content. So I went ahead and did it for you. We will the link pages up all month so feel free to link additional content with us. Thanks in for joining the fun !!!

    rick

  2. So glad you started a blog Sydney & joined the RA blog week. Definitely a great week to start blogging. I love the name of your blog too. It’s so important to try & find the light in what can be a dark journey with this disease. Keep writing, your attitude to this disease will help a lot of people. Take care Sam x

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