Rheumatoid Arthritis

Starting Story

Today is day one of the 2nd annual RA Blog Week! Here is today’s prompt:

Starting stories – tell us about your diagnosis, what were you thinking, feeling or when did you first know something was wrong? Or maybe you were having a break from a biologic medication and you decided to give it another try? 

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I often think back to how my diagnosis of Rheumatoid Arthritis came to be and I wonder how much differently things could have gone.

In September of 2011, Labor Day weekend to be exact, my husband and I took a trip to Dallas to visit friends for a few days. When we arrived, I noticed that my left elbow hurt and just felt a little weaker than usual. I attributed it to hauling my bag through the airport, took a few ibuprofen tablets, and tried to forget about it. When we returned to Baltimore the following week, I went over to Patient First just to have someone take a look at it. They did an xray and diagnosed me with tennis elbow. They encouraged me to get a brace and told me I’d be fine in a few weeks.

The next day, the nurse called from Patient First to tell me that a radiologist had reviewed my xray and saw that my synovial membrane was inflamed. She said I should follow-up with my primary care doctor that week. I did and my doctor agreed that it was tennis elbow, told me to make sure I got a brace and to let them know if things didn’t improve.

By the beginning of October, my elbow was much worse. It was so stiff and swollen that I couldn’t use a drive thru ATM. I couldn’t bend it to reach my face or to put a necklace on. I was worried. I decided to go to an orthopedist who gave me a cortisone injection and sent me on my way. I was seen again two weeks later and was told by the doctor that I was “favoring” my elbow and that it was fine.

By the beginning of November, things took a big turn. I could no longer walk down the stairs in my house in the morning. I would literally sit on my butt and scoot down. My elbow was more stiff and my fingers and wrists had joined the party. My neck was so stiff that I couldn’t completely turn it to either side. I fell asleep during a hair cut. I was in trouble and something was really, really wrong.

I went back to my PCP and in between sobs, demanded tests. My PCP could tell something was wrong and ordered a battery of blood work- Gout, Lyme, Rheumatoid Arthritis, Lupus…you name it and I was also given heavy painkillers. I got a call later in the week to say that my Rheumatoid Factor had come back positive and my inflammation levels were very high. My doctor didn’t want to diagnose me with Rheumatoid Arthritis but encouraged me to get an appointment with a Rheumatologist as soon as possible.

By now it was mid-November. Every Rheumatologist I called, wanted to review my records before deciding to even see me. I called my insurance company. They tried to help but were unsuccessful. I called my PCP back. She was very honest and said that although she couldn’t instruct me to do so, she really encouraged me to go to the emergency room. This was the Wednesday before Thanksgiving. I took off work and went to the ER alone. A fellow came into see me and said she was sure they were going to admit me. Luckily, the ER doctor who finally came to see me had a good relationship with a rheumatologist who happened to be doing rounds in the hospital at that time. He was able to secure me an appointment in December.

I wouldn’t formally be diagnosed with Rheumatoid Arthritis until January of 2012 and would start methotrexate at that time. I wouldn’t start my first biologic, Humira, until six months later. I think back to when Patient First noticed my synovial membrane was inflamed. If I had known, or my PCP had been more educated, would we have drawn labs then, or even a few weeks later when the swelling had intensified? If I had known that patients with moderate to severe RA do better with aggressive treatment early on, and I had started methotrexate and a biologic in January, would I be better off than where I am now?

I don’t spend time harping on the what ifs, I can’t change anything for myself now. But I do share my story so I can change things for the next diagnosed patient. If you’re recently diagnosed, I encourage you to research your disease and treatments, don’t immediately go with what your doctor suggests. Be aggressive. Ask questions. This disease will be with you every minute of every day for the rest of your life. Do what you can to make let it have the smallest impact possible.

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7 comments

  1. Cathy

    And you are so good at sharing your story Molly. You have a great way of telling it like it is but also adding humor and compassion. One of the awesome things about RA and blogging is the great people we meet along the way. You are definitely one of those people. 🙂

  2. Linda W. Perkins

    Wow, Molly. It’s crazy how we have to fight for a diagnosis sometimes, isn’t it? Your story with the RA dx reminds me of what I’m going through with another autoimmune disorder. It really shows how proactive we have to be. I’m sorry it took so long and so much pain before you were able to get diagnosed and receive the help you needed. “Do what you can to make let it have the smallest impact possible.” – Yes, that is the key, isn’t it?

    Blessed to be blogging alongside you during #RABlog Week!

  3. Rick Phillips

    Molly, it is such happen chance that the ER doctor you got was connected to a cool rheumatologist. It seems like your RA might have come up more quickly than my experience which drug out for months / years. I do not knwo which i might prefer. Well ok, I don’t want any of it. That is my preferance

  4. Karen

    Oh Molly, I hate how long it took you to finally get your diagnosis and I hate that you were in so much pain. And still are. Our healthcare system just sucks a lot of the time. Gentle hugs to you.

  5. Lene

    You hit the nail on the head right there. Unfortunately, PCPs are generalists, knowing a little about a lot, but not a lot about some of the more rare conditions that can walk into their offices. It is a positive thing that yours gave you really good advice and facilitated getting seen, rather than dismiss your concerns, like what happens to so many. Thank you so much for sharing your story. I think it will encourage others to keep pushing for answers.

    1. Cristina

      Molly, I loved the comment on “If only my PCP were more educated”. Most of us can relate to how fighting to get a proper diagnosis can become a full-time job. We have also joined the party 🙂 I’m happy for taking the time to read the #RABLOG week blogs!

  6. Pingback: Great Blogs I’ve Read This Week A non-comprehensive list #RABlogWeek Day 5 – Deserae's Silver Linings

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