A few days ago I got to work in my yard and plant some flowers. I know, big deal-people play in their yards all the time. And we all have that friend on social media who posts their latest feats of gardening that would make even Martha Stewart jealous. So what, you ask, is so “blog worthy” about ME planting a FEW flowers?
Flashback roughly 30 years. I’m sitting in Mrs. Montgomery’s 6th grade class doing math and wondering what’s for lunch, when out of the blue I notice my middle and ring fingers on my right hand start to hurt. Thinking I was just pressing too hard on my pencil I eased up and kept writing. It was to no avail though–the pain continued. I muddled past it and was happy when the school day was over. The pain continued for a few days and then my fingers started to swell as well. So I told my parents and they took me to the doctor. After a thorough exam, I received a diagnosis that no 12 year old should have to hear. Juvenile Rheumatoid Arthritis (JRA).
In the late 80s, when heart disease and cancer were the kingpins of diseases, Rheumatoid Arthritis (RA) was but a speck of dust on the medical research radar. Back then arthritis was what old people got because their joints were worn out, and to try and argue that RA was actually a “disease” was a pointless endeavor and waste of conversation. Even worse, to say that a child could have arthritis seemed quite silly to most, so you can imagine the thoughts that went through my family’s head when they heard my diagnosis. I was sent to a specialist who, after lots of tests and exams, confirmed that I had JRA. My family was given as much information as possible about treatment and care and I was given medicine for the pain. We went home and I began my new life as a kid with a chronic disease.
I was fine for a bit, but between the ages of 12 and 19, my JRA moved from 2 fingers to almost every joint in my body. I was able to work and go to college (albeit it in constant pain), but because there were not a lot of meds out to treat or slow the progression of RA, I suffered joint damage. At 19 I was told that if I wanted a family I would need to start soon, as RA (Oh yeah some kids “grow” out of JRA and recover–I did not and moved on to full fledged RA.) affects all parts of the body, including fertility. I would also need to make sure that I chose a career that used my brain instead of my body because I would probably be in a wheelchair by the time I was 30. Words every 19 year old in their 2nd year of college wants to hear, right?
OK, enough back story for now. Long story short, it’s 30 years later and I’m still kicking. Well, maybe not kicking, but definitely giving RA a run for its money. RA has affected every aspect of my life– physically, emotionally, and spiritually. I can no longer do the things I could do even just a few years ago. Exhaustion is a constant companion and I idle at pain level 6–I’ve gotten used to it though, and count my blessings that I can still work part time and take care of my family.
5 years ago I could have worked in my yard from sun up till sun down doing all sorts of strenuous work. These days working outside for just a couple of hours and planting a few flowers in containers sets me back for several days. So being able to work outside the other day was a blessing. I wasn’t able to do much and believe me, I was in pain later, but I can say that for a few short hours, I was able to enjoy a normal life. For a few short hours I was reminded of what life used to be like and how good it felt to work hard and get dirty.
Rheumatoid Arthritis is a nasty disease that I wouldn’t wish on anyone. It takes your hopes and dreams while mangling your body and depriving you of a normal life. I hate it. I hate that I have it. I hate that there is a chance that I have passed it on to my own children or future grandchildren. I hate being so fragile sometimes and having to ask for help. Despite all this hate, RA has taught me some valuable lessons–the best being to take advantage of every day I am given.
The other day I woke up pain free and I planted flowers. It was glorious. I came back inside exhausted, filthy and happy. After taking a shower (and pain medicine for the inevitable bite that RA would give me), I went back outside and took pictures of those flowers. Later that evening, I posted those pictures on my social media with the happy proclamation that I was “able to do some gardening today.”
I hate RA. But I love that it forces me to appreciate the little things in life…like flowers.
Wanna know more about RA? https://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/