I remember when all I ever tried to do was keep “my secret” secret. After years of doing so, I remember the day that I made the conscious decision to not “lie” anymore to keep “my secret”, which comes much later in this journey.
I have decided to share “my secret” story in hopes that it helps someone else and maybe will bring a little smile into your life as well, as yes there has been a lot of humor in this journey. What I don’t want is anyone to ever feel sorry for me, that is not what this is about, and is often why I keep “my secret” secret. I have never felt sorry for myself and never ever plan on doing so. I am blessed beyond measure every day of my life, good and bad days included…so remember this is to share how and why I keep my positive attitude and how maybe, just maybe, someone can be helped by my experience.
You will have to come back often to travel on this journey with me. Some friends that do know about “my secret” have often told me, “you should write a book.” Since books have endings, and this journey will never have an end for me (until the end) so instead, I decided this would be a fun way to share my story. Plus “journaling” is good therapy and we all could use a little more therapy.
Let’s start by telling you “my secret.” RA-noted in the title of this blog is short for Rheumatoid Arthritis. A lot of people hear that and say “oh, man I got arthritis too.” And yes, I do sympathize with anyone that has pain, however, Rheumatoid is more than “just arthritis.” Rheumatoid Arthritis defined a chronic progressive disease, causing inflammation in the joints and resulting in painful deformity and immobility, especially in the fingers, wrists, feet, and ankles.
My RA journey began a long time ago, though me being 15 wasn’t really that long ago, was it? According to my daughter, I am ancient but in my mind, it wasn’t really that long ago that I was a teenager with not a care in the world…well maybe once you read my story you will see that I did have a “care” a care of what others thought, that now looking back made my life more difficult than it needed to be.
I honestly don’t recall all the details of when it started, but what I do remember is having pain that was not tolerable at times. We were raised at a time that people had gardens and I remember my parents telling me that they felt guilty for thinking I was lazy because I would have to sit on the ground and scoot my butt along the row, and oh how long those rows were, to be able to pick beans. I simply could not squat at all. I know my parents could have shared many stories here, but, for me, I guess it is good that my memory “isn’t as good as it used to be” or that time in my life was more painful than I want to remember.
I heard my mom share the story before when she knew it was time to take me to the doctor. My mom reminded me of a trip we took where after sitting for a long period of time that when we arrived I could not get out of the car and walk and it was then that one of my grandparents told her that she needed to take me to a doctor.
I honestly don’t remember going to the doctor at that time, though I know we did. But, what I do remember is having a “flare-up” and spending my 16th birthday in a hospital bed at Duke running tests and getting IV steroids. I had my “sweet 16” the weekend before so I guess it wasn’t too bad to be in the hospital. I remember my parents were eagerly awaiting test results, either MS or Rheumatoid, and they were so happy that it was Rheumatoid Arthritis. I did not understand that then, but I do now. This would be the first of many hospitalizations over the years for me. I am pretty sure they should have named a wing at Duke after me since between my parents and me and my husband, we have paid them enough to do so.
Then the journey began. I was in high school, the best years of my life. I did not allow RA to get in my way, but I can say it was often challenging.
My memories of high school-related to RA…
I was not able to participate in PE like my friends yet I did not want to be asked why I got to sit out of certain activities like I couldn’t do pull-ups, squats or run. I am sure there were others but I specifically remember those. I had a note from my rheumatologist that released me from PE however that would only spark questions from friends, so how do you handle that? You become creative. I had a supply of arm slings, ace bandages and such that I would wear during the semester of PE class. That way I was “injured” and did not have to explain why I wasn’t participating. If anyone gave it any thought, which I doubt they did, I would have seemed clumsy. I had “good stories” of what I had done to make me seem cool instead of the “sick” girl or “handicapped girl.” Yes, those things even back then, meant a lot to a teenager who just wanted to “fit it.”
Then came the tornado drills. For most, it was an excuse to get out of class even if only for a few minutes, but for me it was sheer panic. For me to get down on the floor in front of others and then trying to get back up was impossible, without looking awkward in my eyes, so I would not go to school that day (I worked in the office some so I knew when they were planned) or some other creative reason that I didn’t have to participate if I failed to know when they were.
There were lots of doctor visits for treatment over the years. The ones I remember the most were going to a doctor in Stoneville NC who was known to practice more holistic treatment and my parents, like most with a child with medical problems, would go to the ends of the earth to find a cure for their child. I remember being old enough to drive myself and would go monthly to get a B12 shot and see the doctor. Looking back, he had some great treatment ideas but to ask it of a 15- year-old in those days was too difficult. I could not eat red meat unless it was wild, i,e, deer meat, and rabbit, thank God we are country folks. I could eat anything that swam, flew or walked on two legs, but it could not be fried, no flour (back then I wasn’t aware of coconut flour or almond flour). So, what did you do when you went to McDonald’s with your friends? Exactly, so of course, this did not work for me. This was “back in the day” before you could buy “semi-healthy food” at fast-food restaurants. So my pain and discomfort continued and it wasn’t until later that I learned what long-term inflammation does to the body.
I did truly enjoy my high school years and have incredible memories of those years. I never let the pain or discomfort win and tried to be as normal as possible in the eyes of others, okay as normal as possible for me. I couldn’t play sports or even be in the band as my body would not allow me to do so, but I sang in chorus, participated in clubs and maintained good grades through it all. I also drove a school bus and worked after school at Rax Restaurant. I did learn though that sometimes no matter how hard you try, sometimes RA does win, physically. I recall specifically one time that I had to close at Rax and the manager made us clean, clean and clean some more. I ended up with a flare-up so bad that I had to be hospitalized. I never had to close again (not sure if any of my co-workers ever picked up on that one) though I did continue to work.
As hard as it may have been, I never let RA get me, even as a high school student, just trying my best to be normal.
Come back next time to go with me from high school to college…..