I have what? But I’m not old!

In my early 40’s I had a series of back surgeries to repair a fractured vertebrae and several ruptured discs. As a result of this I was on prednisone and a nonsteroidal anti inflammatory that’s no longer on the market plus serious pain meds. So these masked my RD for many years.
I woke up one morning and could not lift my arms. Then my legs swelled to twice their size. Every joint in my body hurt. I ran a constant low grade fever. My doctors ran all the tests. My RA factor was negative so they ran more tests. Then I developed a trigger finger and had to have surgery. I was awake for the procedure. When the doctor opened the area he said, “Hmm, this isn’t what I thought it would be”. He started asking me questions and I told him about the joint swelling and pain. He took tissue samples.
I’m a sero negative RD patient diagnosed by a hand surgeon.
I live in a small town and quickly went through all the “Rheumatologists” in the area. I ended up with the head of rheumatology at UT Southwestern in Dallas, TX.
Getting a diagnosis was the hardest battles for me. My husband and I educated ourselves quickly but I still missed a year of work.
Now I battle ignorance everyday. I also have fibromyalgia and diabetes.
I just learned a new term- Activity Hangover. I have to schedule work so I don’t live with this as I work two nights a week and two weekends a month. But my work is important and I love it so I make it work.
My wonderful husband is so loving and supportive. We agreed early on that we can hate the disease but not the person. My children are also supportive except for my son who saw too many horrors in Afghanistan to find sympathy for a disease he can’t see.
But I’ve come to the point where I can no longer hide the pain and need a handicap placard. I resent the dirty looks and questions.
I think people should live in our bodies for 24 hours before they can judge or make stupid suggestions. I also think the idiots who decided Tramadol is enough to handle RD pain should live with RD permanently and see if they stick with their decision. Make the criminals pay for their abuse not those of us who actually use for pain. Numerous studies have shown that you cannot become addicted to narcotic pain medicine if used properly for pain relief only. I am living proof of that.
Having ranted about all that I must say that for the most part I love my life and I always love my Lord and serve him through my job and I love my family and my precious grand babies. I am the only member of my family with RD and pray I have not passed it to my children or grandchildren.

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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  • Erin Rush moderator
    3 years ago

    Hi RaRa!

    Thank you for sharing your story with the RheumatoidArthritis.net community! You so eloquently shared what many of our community members can relate to — the long road to diagnosis, the search for a good rheumatologist, the struggle to maintain a good quality of life while living with RA. You really summed up a lot in your story! Thank you! And it’s always helpful to read more stories from our sero-negative members. For those fighting for a diagnosis, your words can offer hope to keep pushing for an answer. I am glad you finally received the correct diagnosis, even if it was in a somewhat unusual way!

    I am glad you and your husband have worked hard to stay united in your fight against RA. It can be all too easy to let the disease steal more from you than your health!

    As you can tell from the comments our community members make, you are not alone when it comes to battling ignorance about RA and what living with it is truly like. While it is hard to have to accept change, I do hope using your handicap placard helps you manage on those not-so-great RA days. People can judge all they want, but until they have walked a mile in your shoes, they have no authority to tell you or anyone else how to live your life.

    It sounds like you have educated yourself about RA and your other chronic conditions and knowledge is power! You really summed up the RA experience so well in your story.

    Thank you so much for sharing with us. We are glad to have you here! Best, Erin, RheumatoidArthritis.net Team Member.

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