By Shannon Young, Executive Director of the Rheumatoid Patient Foundation
When your doctor calls at 6 p.m. on a Friday, it’s either really good news, or really bad news. Eight years ago at 6 p.m. on Friday, April 13, 2012, my doctor called with the news that I have Rheumatoid Disease. This was the culmination of several weeks of excruciating pain, denial that I had something serious going on and had reached the point where I couldn’t even pull up a sheet when I woke up cold in the middle of the night. My onset was sudden and brutal after a complete hysterectomy in late January.
I spent a lot of time crying that April night. I was scared. While waiting for my results I had done my homework. What I learned wasn't good. I knew that night that my future was very uncertain. When my results came back high positive in all categories, I knew that meant the likelihood of a more aggressive case. I knew that the majority of people with my results were disabled in 10 years. I’ve always considered my job in education as a calling and it became my goal to beat that 10 year prognosis. I had worked for years with students who have had the odds stacked against them, now they would be stacked against me as well.
I now have lived with this beast for eight years. I have tried to make peace with an immune system that has decided to attack part of me. I have learned way more than I ever wanted to about the specific cells that govern our immune system and how we try to shut them down. I have been on seven different biologics and two JAK inhibitors in addition to multiple disease modifying anti-rheumatic drugs (DMARDs) and lots of prednisone. Meds work for me briefly, then they don’t and we have to change what I’m on. I just keep hoping the pharmaceutical companies keep creating new ones fast enough to keep up with my ever changing disease.
My rheumaversary always spurs reflection. I have learned so much in the last eight years. Starting out I had no idea that various forms of chemotherapy are used to treat RD because I had no need to know that. Now that my hair is drastically thinning, I know it all too well!
I have cried. A LOT. It’s usually when I have to go back on a higher dose of prednisone and always when I have a rheum appointment because on those days I can’t deny that I have something “wrong.”
I have battled fears I never thought I could overcome. I had two kids with no epidural due to a fear of needles and learned to give myself shots! I have met so many amazing people who have fought for us as patients and have been blessed enough to be able to join that fight. I couldn’t be more honored to be among this group of people battling this disease.
So what have eight years of being a rheumie taught me?
- My faith is my rock. (I knew this, but sometimes we need to be reminded)
- I am so fortunate to be loved.
- I should have appreciated the ability to exercise if I wanted to.
- I am way stronger than I ever thought I was.
- Modern medicine is an amazing thing.
- Some of the good old remedies rock too.
- People are good and want to help so they share LOTS of remedies with you.
- Sometimes things don't go the way we want them to but that's ok. It is what it is.
- Family is golden and EVERY minute counts.
- Being able to braid your daughter's hair should never be taken for granted.
- The best friends are the ones willing to just sit with you when you don't have the energy to do anything, have frozen yogurt with you for dinner after an infusion, join the fight to advocate with you, and try to understand your disease as best as anyone who doesn't have it can.
- Having a purpose can make it possible to work through the worst pain.
- Prednisone is the drug I hate to love.
- Rheumatoid Disease is not like the commercials on TV. I thought I’d be Phil and I’m not.
- Laughter will always be the best medicine.
- We don't say thank you enough. So to my support system, thank you! I love you.
- When you are 49 with a blankie, you call it your prayer shawl. After all, that's what it was given to me as.
- Nothing eases pain as much as gentle hugs, especially if they are from a little one, your child, or your spouse who is fine just watching stupid pet videos on a Friday night. Holding babies helps too!
- Sleeping in is a wonderful thing and necessary at least one day a week.
- I have the best co-workers. Seriously. The. Best.
- Hope is a necessity. If the first, second, third, fourth, fifth, or sixth med doesn't work, the seventh might.
- When you’re a rheumie, you fangirl over meeting a well-known rheumatologist.
- Everyone is battling something. Just be nice to each other.
- Asking for help is NOT a sign of weakness. Ok, I'll be honest, I'm still working on this one.
- Handshakes terrify me and one good thing from the pandemic crisis might be them going away forever.
- This is largely an invisible illness and for now, I'd like to keep it that way. (Total fear of hand deformities going on here!)
- With the right attitude a trip to the infusion clinic can be somewhat spa-like. Well, minus the IV and nasty meds. But the nurses are great and bring you a basket of crackers and whatever you want to drink. If I could just get my nails painted at the same time…
- I still have a lot to learn and a lot to teach others but I have a fabulous Rheumatoid Patient Foundation team to do both with!