Finally getting a plan in place.

Hi all. It’s been a long journey without a map and no GPS. I haven’t had a regular Rheumy since I got diagnosed 11 years ago. There is not a doctor who comes to my town and I could only see someone once a year if I drove 90 miles one way… and it was always someone different each time I went. All that changed when I made a “I’ll take anybody” appointment a few weeks ago.

I have never had a really bad flare. Four or five days of Prednisone always kicked me back in gear. I have been going downhill for many months but would not admit it. With nobody checking my blood tests, or ordering the right blood tests, I went under the radar. I finally got to the point where I couldn’t move any joint without pain. I own a store and run it myself. I was killing myself at work and spending my time at home trying to get ready to go back.

The doctor that I saw is a family medicine doctor. The most amazing part for me is that his wife had R.A. and he is an expert at diagnosing, treating and UNDERSTANDING R.A. Most unfortunately, his young wife died. The way he talks about her struggle makes her sound like an amazing example for us. I am so fortunate to have found him.

We tried the usual short course of Prednisone a few weeks ago. It helped a bit, but stubborn me didn’t go back right away. I went back today and he said that this had gone on long enough. He put me on a 14 day course with a taper and is researching my current med (Enbrel) and pondering adding Methotrexate to it. He is heavy into researching everything and has agreed to be my Rheumy. Imagine that. A doctor that I can count on, can go to, can question about things, etc. A doctor who will help me with a plan. I have hope… and hope will go a long way.

I’m not great at asking for help or support, but I enjoy checking in here. I don’t feel like a burden here. I don’t feel like I will be pitied here. Thanks for reading this. I feel better already. Calm seas to everyone.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • Lac294
    7 months ago

    I just wanted to say hello. I am having trouble typing right now because within a matter of hours my index finger that was hurting is not but now the inside of my hands feel like someone hit them with a hammer. RA seems fickle but constant. 🙂 I hope you find the help you need. I am just in the early days of a diagnosis so still trying to figure it all out.

  • Richard Faust moderator
    7 months ago

    Hi Lac294. Sorry to hear about the diagnosis and that you are struggling. Know that you are not alone in the quest to figure it out. One of our contributors wrote a series of ten articles on things she would tell her newly diagnosed self (I recommend all of them). The first is on getting the diagnosis and the opportunity it presents: https://rheumatoidarthritis.net/living/no-1-its-just-a-diagnosis/. This community is here for you with information and support. Best, Richard (RheumatoidArthritis.net Team)

  • WayWayUpNorth author
    7 months ago

    Hi, Lac924. You are describing exactly what sent me to the doctor and what led to my diagnosis. I felt like I had broken my hand, though I had not injured it. I could only describe it as “bone pain”. They followed a hunch and ran the bloodwork for R.A. Mine has never been bi-lateral – affecting both sides, and has not, until recently, been affecting actual bones. I suffered with pain in all of my “soft areas” and “connecting areas”. In the last 6 months, I am starting to have some bone changes, but we are working on that.

    Be proactive. Be firm and calm with the doctors and nurses. Ask for the tests. If they don’t want to run them, ask them to make a note in your chart right then and there as to why THEY have chosen not to. This is your body – defend it.

    All that being said, try not to get lost down the rabbit hole. Don’t let this become what you are. Get the best treatment that you can construct for yourself, take care of yourself, take it easy on yourself and keep on going. You are not alone. 🙂

  • Richard Faust moderator
    8 months ago

    Thanks for sharing your story Waywayupnorth. Glad you finally found a doctor you feel understands RA and who you are comfortable with. When you mentioned the doctor saying things had gone on the way they were for long enough, I couldn’t help but think of this article from one of our contributors on a doctor who wouldn’t let him settle for simply reducing the intensity and frequency of flares: https://rheumatoidarthritis.net/living/the-good-doctor/. Know you are absolutely always welcome here. Best, Richard (RheumatoidArthritis.net Team)

  • WayWayUpNorth author
    8 months ago

    Hi, Richard. Thanks for the kind reply and for the link to the article. It was a very timely read for me. I appreciate your support. This is a soft place to land. Best wishes.

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