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Linda’s Patient Journey – March 2020 Autoimmune Month

Linda's RA Journey

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Week 1: Leading up to diagnosis…

Sitting in the doctor’s exam room, I wasn’t expecting to hear the words my healthcare provider said, “You have rheumatoid arthritis.” I was blank, staring.  I didn’t even know the questions to ask at the moment. In the four months prior, I hurt. The aches, the swelling, and extreme fatigue. Holding a pencil or fork or toothbrush was unbearable. Going to my family doctor was a driving pain. After a cursory chat and a prescription, I was told, “If you’re not feeling better in a few days, you need a rheumatologist.” Two months later, I had an appointment with Dr. T, my rheumatologist, who palpated each joint and asked hundreds of questions about sleep, pain, movement, and life in general. She ordered lab work and x-rays,  scheduled occupational therapy and physical therapy appointments, and handed me a bunch of prescriptions along with an appointment to come back in eight weeks…


 

Week 2: Understanding my disease…

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After the initial shock of my RA diagnosis, my doctor and I had a good conversation about what this meant for me. There’s no cure but RA can be manageable. It can be controlled. Dr. T believes in attacking the disease aggressively to stave off more joint damage and started me on methotrexate. Now I needed to be my own best advocate. I researched the disease, which was frightening. Reading about the medications often used in treating RA was scary, but I didn’t want to give up my quality of life. I had so much planned for my life and I was going to live it. Four months after learning I had RA, I started on my first biologic. OT and PT helped immensely, and I started feeling better.

 

 

 

 

 

 

 


 

Week 3: Finding the right treatment… #EmpowerWithVectra

1582222060041 3 airplane There was no Vectra® test when I was initially diagnosed. My doctor instead relied on other blood tests and joint tenderness, as well as including my input into setting up a care plan. That all changed in July of 2013. During a regular check-up, Dr. T discussed this new test that specifically looked at biomarkers in patients with RA. She said Vectra scores would help us both to make informed decisions about my treatment.

I took my first Vectra test and my results came back in the moderate category. The following year, my scores showed significant growth in my disease activity. This aligned with how I was feeling: tired, achy, stiff, with red joints. I was put on a new biologic and within six months at my next Vectra test, my numbers were dropping. I’ve continued to take the Vectra test every six months as part of my ongoing care plan. For the most part, I’ve stayed level in the moderate range.

Last year, in turning 65, my body was turning on me again. Back to the doctor’s office for a check and a Vectra test. This time, my results were in the high disease range, and the physician changed my medication. Having this test confirmed how I felt. It wasn’t my imagination. My suspicions were validated.


 

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Week 4: Living and monitoring my disease…

Having RA didn’t and doesn’t mean my life is over. It’s a new normal with many ups and downs. I have great family support. The hubby reminds me to take breaks when he thinks I’m overdoing it. He knows when I’m not feeling up to par without my telling him, and we slow down. My two sisters and I embark on a yearly sister’s weekend. It’s 3-4 days on the go, to wonderful places. They always have me lead the pace and make sure we take breaks. I searched for support groups and joined several. It helps to flesh out information and chat with others who understand just what I’m going through.

I took a huge leap in 2009 and decided to get my pilot’s license. My spouse had his. Having RA didn’t make it easy. The FAA required not only a special physical but also letters from my doctors stating I was physically able to take on the task. It took longer than usual, but in the end, I earned my wings. We traveled the country in our little plane, and I was pilot-in-command for many of the trips.

I didn’t stop there. The following year, my family gave me a sky diving experience for my birthday. It was wonderful, floating through the sky.  A year or so later, RA grounded me. I was having more challenges with my joints, and Dr. T and I decided she could no longer tell the FAA I could be pilot-in-command. My wings were clipped.

However, we continued to travel, and we do so today. The National Parks call our names, and we plan trips to see our beautiful country. I have hiked the easier trails in Glacier, Acadia, Wind Cave, and Theodore Roosevelt National Parks. Sometimes I had to sit out, but I was still part of the experience as we wound our way around the parks.

We are moving on to a new experience in our lives: retirement to warmer weather. This involves getting our home ready to sell and packing up our lives. My biggest challenge: finding a new rheumatologist I trust as much as Dr. T. It’s actually frightening. I used the Find a Provider feature on VectraScore.com to help me locate rheumatologists who use the test. Having this test is so important to me as  it has enabled my doctor and me to look at best treatment and to manage my RA. It has armed me with information and verified how I was feeling.

My wings may have been clipped but I continue to soar with RA.

 

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