LaRita’s RA Journey
Leading up to diagnosis
When I was first trying to figure out what was going on with my body, I was in pain, but I was also in a tremendous amount of denial. I was diagnosed with rheumatoid arthritis in the early-mid 90’s. RA is a serious disease because if you ignore it, you are taking a pretty big chance of having damage in your body that might have been prevented or at least limited somewhat if you had had proper care. I was aware of this, but at the time I started figuring this out, none of the biologics were out there.
When I first went to my primary care doctor and asked, “What do you think I should be doing about this pain?” she said, “There is a disease called rheumatoid arthritis. I could make an appointment with a rheumatologist.” I looked right at her and said with absolute seriousness, “No, no, no, I don’t have that. I don’t have that, and I don’t need that appointment.” I am a college professor with a lot of experience with research. I had researched my symptoms and realized I likely had an autoimmune disease, probably rheumatoid arthritis. And as soon as I got that information, I decided I was going to ignore it. Somehow, I believed that if I didn’t acknowledge it, it didn’t exist.
As time went on, I started to realize that I had gradually – and unintentionally – changed my wardrobe to clothing without buttons and only tennis shoes. It became a good joke for all of my students that I always wore the same shoes. I also started having trouble with one of my legs and terrible trouble with my jaw. A lot of people think that you have a lot of problems with your hands if you have rheumatoid arthritis, but any joint in your body can be attacked by the inflammation of rheumatoid arthritis. Eventually, I agreed to see a rheumatologist, someone who coincidentally turned out to be a friend and a neighbor. He diagnosed me with RA.
Coming to Terms with my RA Diagnosis
When I agreed to see a rheumatologist and was diagnosed with RA, he was concerned about why I hadn’t done anything about it. We went around in circles for a while, with my not wanting to take any of the medications — because I was afraid of them and because I didn’t know if they really help. Eventually, I agreed to start taking methotrexate as an injection regularly to see if that would help. When I first started, it was a little bit scary. I was not terribly afraid of needles, but certainly didn’t like them and certainly had never given myself a shot. After a short time and lots of practice with a former student who had become a nurse, I got to the point where I have no trouble giving myself a shot.
Even though I was taking the methotrexate, I still wasn’t doing particularly well. Once I had my RA diagnosis, I got involved with the Arthritis Foundation. I was doing events with them in other parts of the state and, eventually, other parts of the country, to raise awareness for rheumatoid arthritis and psoriatic arthritis. That put me in situations where I was meeting all kinds of people with all kinds of experiences living with autoimmune disease. Prior to this, I didn’t know anybody who had been diagnosed with what I had been diagnosed with, so when I met these people, part of me was so glad to see, “Oh my gosh, there are people like me.”
Through my conversations at these events, I started hearing people talk about a new drug called Enbrel. I didn’t know what Enbrel was. I didn’t know what a biologic was. Although it wasn’t yet available, I learned it was one of the few medicines that had been developed specifically for rheumatoid arthritis. Being involved in the arthritis community was really positive. It helped me to meet others who were going through a similar experience. Through those relationships, I was able to learn new information, such as information about Enbrel. And I found that, like me, many of the people who are living with chronic pain find a way to make fun of themselves. They have a little compassion for themselves, have a way of being lighter-hearted than you might think. And they were generally wonderful people who could say, “Yes, I have this disease, but this disease doesn’t have me.” So, it was very good for me to meet some of these other people who were dealing with what I was.
How Vectra plays a role in guiding treatment decisions
After Enbrel came out, it was the beginning of a wonderful time of watching people start feeling better and doing better because they were on this drug. What got my attention was that people were telling me how they felt before they were on it and how they felt while they were on it. — but I was still very cautious. So, when my rheumatologist suggested Enbrel to me, I said, “No, no, no, no.” Like telling the doctor that I didn’t have arthritis, again, it was a little bit of fear. It was a little bit of pride. It was a little bit of concern about how I would afford it, all of those things.
I could see my doctor was getting frustrated, but he let me take my time. Finally, months later, I went to my rheumatologist’s office and said, “I think I need to go on Enbrel because I can’t do this anymore.” The thing that made me do it more than pain, more than anything else, was the awareness that while I was trying to tough it out, my body was getting damaged. And many times, the damage that comes from inflammation is something that has to be treated either by surgery, of which I’ve had several over the years or by other kinds of drugs and different types of limitations.
Because I was diagnosed so long ago, the landscape was so different than it is now. The way that doctors determined how bad symptoms were was really subjective. I had a wonderful doctor, and I knew that she would believe me when I told her how I was feeling – but I always had “self-talk” in my head and worried that she would think I was exaggerating. I was SO VALIDATED when I started having the Vectra test, which backed up what I was feeling with real numbers. I’ve always loved data and having my Vectra score gave me a lot of confidence because the numbers usually track exactly with how I’ve been feeling. I’m so glad that those who are newly diagnosed can have this tool from the beginning of their journey and can get a handle on their RA more clearly and more quickly than we were able to in the past.
Living and monitoring your disease/How I am #RedefiningRA
If you’ve been following my story, you probably know I like to do things my own way, and sometimes it takes me some time to get there. One of the hardest things in this journey is giving myself permission to take care of myself. It’s a constant balancing act of trying to find out what needs to be done and what can be done later or by somebody else. If you can manage that, you’ve come a long way. I’m still not there yet. I don’t know if I ever will be, but I’m definitely better than I was when all this first began.
I stay as active as I can. My husband and I live in Florida, fairly close to St. Petersburg and Clearwater. A few years ago, we decided to open our home to tourists via Airbnb. We truly enjoy making new friends from all over the country, sometimes from other countries! We also make time to travel to see our family in Virginia, including my precious grandson, who is a newly mobile one-year-old.
Staying on my medication – and ensuring its working – is critical for me. I continue to get Vectra tests regularly so that my doctor and I both know I’m on track.