Pills, shots, blood tests and special shoes.
I have RA and I am thankful for it!
This is long, so settle in.
Growing up in Northern Wisconsin as part of a lower income family during the time where the VCR was invented, M*A*S*H and Watergate was the talk and Skylab took flight. ‘Saturday Night Live’ changed the TV watching habits of teens. The bicentennial fireworks were awesome, Elvis had passed and Star Wars became a distraction from the unfortunate bad economy. My life was not much different than many others around at that time where were coming into our teenage years. Getting older back then, meant moving away to college or getting your own place with a projection TV and a HI-FI.
But life, for some reason thought that my being a skinny, tall and somewhat clumsy 12 year old was not enough. Enter Scoliosis. I don’t know where the medical community came up with this need to take a bunch of nervous 7th grade boys, have them strip down to their undies and parade them in front of a couple strangers as if we were on display for them to review before the horse auction?
Ok, we can work with this as he is not twisted up that bad. We only need to fit the boy for a plastic girdle.
Great just one more thing that an awkward boy needs to fit in! Thanks Doc.
Now about this same time I was on the elementary schools track team. I was running the 50 yard and the 440 yard events with good finish times. In the few competition events that my school took part in, I came home with a 2nd or 3rd place ribbon for each event every time.
Now hold on, 8th grade came and so did the need for the girdle upgrade to the newest and coolest model. You know the one where the user now gets the full time, built in chin rest, and I got to model this wonderful fashion statement 23 hour a day! What no cup holders? Dang, now all I needed was the stainless steel head gear with the nylon straps in the back to force my teeth straight. Luckily for me, the local welfare program wouldn’t pay for that as my front teeth did not pass the “Does he have a donkey face” test. But they did supply me with the latest Mr. Magoo model of reading glasses; I had them but couldn’t use them for long as they mysteriously became lost. Needless to say it, but my track and field days, along with any other athletic or competitions in sports days were not allowed.
I made it through 3 years of high school gym into junior year by taking as few physical education classes that I could and just enough to get minimum credit points. Things like badminton, snow shoe, X-C skiing, Which I did all winter on the way to and home from school, also tennis, which I think is boring, and swimming. I hate water. I know how to swim, but I just hate doing it and hate going into it. It took my wife 15 years to convince me to go on a cruise. I enjoyed it, just was not too comfortable with it.
Back to high school. Now I have no clue if scoliosis has any relation with RA but during that time I was using my custom fitted, girl repelling, personal roll cage, I do remember visiting the family physician on more than one occasion with complaints of sore joints, bones, muscles and one ankle that seemed to, best as I can describe it, pop out of place and back into place, occasionally when taking a poorly placed foot step, sometimes causing me to take a header down the stairs or whack, into the edge of a door frame. The 1979 medical diagnoses was, drum roll please, “growing pains”. This boy is just growing too fast for him to catch up to himself! Thanks doc, your college must be proud!
Well I somehow managed to also loose the body armor for senior year, it may have also gotten misplaced to the location that the dork glasses went to, but I am not confessing to knowing anything about that.
With high school done I moved on and away, got married young and quickly started a family; I worked hard to have a good life. During the early years I received more schooling for different trades in which rewarded me with good jobs in their specific fields. I have been a scratch baker making all the goodies we have come to enjoy, a factory worker making custom indoor wooden window shutters. I have worked as a factory maintenance technician where I kept the production machines working. I have been both a machinist and have earned my journeyman’s status as a tool and die maker. All of these choices I made have been good for me, my wife of 33 years and our 2 wonderful children, who are now out making their futures in the world.
These career choices have also been choices that have been hard on my back, knees and feet. Baking keeps you on your feet, the flour sacks that you toss over your shoulder to carry out of the stock room are 100 pounds. Working in a factory or in front of a milling machine or lathe is all hard time on your feet.
Today I have a good job behind a desk as a 3D draftsman drawing on a computer, OK a desk job is not a dream job for many, but it beats standing around all day in steel toed boots on cold concrete floors. Been there, done that.
Now to the part of the story that has to do with this RA forum.
About 10 years back, my right elbow became a bit sore but only at the outer limits if normal motion. No big deal right, just one of those getting older things? Who knows? Well the elbow remained a bit sore for a week or so and the pain went away. But the sourness was replaced with a swelling directly over the pointy point of the elbow. In a few days this swelling became a soft lump that felt like it was filled with liquid. I could squish it around and feel the liquid moving. YUCK right! So it off to the walk in clinic I go.
Well because I had no real pain and I could move the elbow normally, the fix was, wait for it, just wrap it real tight with this elastic strip for 2 weeks. It will probably go away. Tennis elbow was the reason given. Cough - cough, yeah right!
2 weeks later I was back getting it drained with a very thick needle by a different doctor who said she would have done this the first time I came in if I had seen her than. Oh, the stuff she sucked out, well, (skip to the next paragraph if you get queasy easily) ----- looked like a slightly lighter in color version of beef gravy, lumps and all.
A year or so later, the right big toe became tender one morning. You know that feeling, the one that feels like you misjudged the location of the bed post leg one night and wham! Now I did not remember hitting the toe on anything, but things happen. This feeling hung around for a week or more until the darn thing became hard to bend for a few days. Moving on now to the next phase, another week later it was now slightly inflamed and walking was causing moderate aggravation to the toe and also to me. So now back to the walk in clinic, shout out to my boss for some awesome insurance coverage, the visits are not a financial issue. This time I got to see a doctor, who was familiar with my family, he even asked about my kids by first name.
X-Rays for anything busted, nope, looks normal there. Blood tests for gout, nope normal there. Test for any possible infection, as he also noticed in my records the elbow thing, we be fine there as well. What next? Thank goodness he was sharp enough to do the blood tests that point to and suggest looking at RA. BINGO! Ding-Ding-Ding! We have a winner.
‘Let’s book you an appointment’ he says, ‘with a rheumatologist who I know well’. My appointment was out 4 weeks. Yes that is fast from other posts here that I have read. In the mean time I start getting other joints that seemed to be following in the footsteps to where the big toe went. I still had about a week to go before my first meeting with the new doctor.
I had some work to do yet on the deck I was building and set out to get some of it done. Well I had to stop early that day, go inside, load up with Advil and just lay on the floor. That old comparison to the bus running you over was felt that day, and that night, and the next morning and later that day in the ER as I could no longer use my arms, shoulders, knees to anything close to normal functions and the over the counter pills were having no affect. Well they shot me up with some WONDERFUL pain killers, gave me a prescription for the play along home version of the fun and sent me on my way. I now know why so many professional athletes can get hooked on these things. (I’m OK, no dependence here)
My rheumatologist, let’s call him Dr.G, said he thinks the elbow thing may have been an RA event. Dr.G and I worked out a treatment plan, but having to go through the insurance procedure of try this and this first before going straight to the more expansive biologics.
Well in the time it took to get the RX thing worked out I became a hunched over old man needing to plan the climb up the stairs for each step. The keyboard and the mouse were mocking me every day. During this time, I lost out on a lot of sleep, drank a lot of brandy, and missed an out of town wedding and a few birthday parties. I needed to take a folding chair just to be able to stay long enough to watch the whole small town 4th of July parade. Unfortunately I did not have enough energy left to stick around for the grand display of the fire work show.
Medication plan was still not working at that time. The company I work for today is the same as back then. At that time it had just gotten sold to a person who was a close contractor we did business with and he had no plans to change things. Now when the new boss comes into the office and wants to get to know his new staff better and sees a man who looks too young to be acting so old, well that’s a good first impression. All is well on that front now as I sat him down and let him know what was going on at the time and also that I may need to miss some work to doctors and also to not having a good day.
After a year, (thanks insurance company) Dr.G and I finally worked out the RX and it is Enbrel and Methotrexate. It took several more weeks to prove things were actually showing progress.
This is where we insert the happy dance.
Until this time of trial and error of RX, I became somewhat depressed, turned into a couch potato, put on 35 pounds and just felt lousy. My mind was telling me to get busy, my butt was telling me, later dude. The rest of me was all jumpy, anxious and nervous all at the same time. But I had no energy or focus for the things I used to do.
During this time my daughter who was about 23, was training to run her first half marathon in late May of 2012. This is a girl that I don’t think even ran for anything, other than a soccer ball when she was 10. Come race day the wife and I drove 45 munities to meet her at the race location. We took a few pre-race photos, watched her line up with the other runners, enjoyed the race start ceremonies and after the starting horn blast we watched her as long as we could before she vanished into the wave of runners off into the distance.
What does this have to do with me and my RA you may ask. While setting in the bleachers along the finish line cheering others as they came past and waiting for our athlete to come into view to get a photo and cheer as loud as we could, I had an experience that changed my life that day. I am sitting here, I have a disease that is mostly under control, and I am under 50 years old watching others doing something I have not attempted to do since 1978.
Now I can see on the faces of these runners the hard work it took many of them that day to run a half marathon, a distance of 13.1 miles and the full marathon runners pushing for 26.2 miles. Mixed onto this group of runners I noticed several people who clearly have difficulties that are much more grater that what I do. There were men and women with missing limbs, including legs that were finishing; there was a man who was tethered to his teammate who was leading him because he was blind. I saw people running, fighting to cross the finish who were dealing with weight issues.
I just need to take some pills and take a shot one time a week. I have no right to complain about my health issue.
That is how RA has changed my life for the better.
I kind of feel bad wanting to post my story as my life with RA is in control and I have almost no issues and if you did not know I have it, you wouldn’t be able to tell it by looking at me. But RA does not mean you are done for. Since that day at the race in 2012, I started running and participated with my daughter in my first race that year, 5 miles on thanksgiving morning.
In January 2013, I ran my first half marathon ever, at Disney World, also with my little girl.
Since then, I have run several 5K and 10K events with both my son and daughter and even a few thanksgiving mornings where my wife joined us. This May at the same race this year where it all started, I will be running in my 8th half marathon. Since than I have been averaging almost 800 running miles a year and soon will be a grandfather.
Having RA does not always mean that life is over.
Having this thing for some, can be really bad, I understand that. I do feel bad that people have to go through it like many do. I do realize that many never get to run ever again.
With every ache or pain I get, I remember those who suffer 10 times what I do every day.
Every time I grumble about having to go to the gym because that day is strength training day, I remember those who have to work up the strength just to get out of bed each morning.
Every race I take part in or go to watch and cheer, I cheer for the ones who have to work harder than I to cross the finish line. I cheer for the ones who are giving all they got and are bringing up the back of the group. I cheer for the ones crying from the combination of joy and pain and are still fighting to finish.
For those who are struggling with RA, I am cheering for you.
How often you do experience an unexpected boost of energy?