From Pain, to AS, to RA
I've always had bad feet. When I say bad feet I'm talking about a foot with a negative arch--pancake flat, duck flat, whatever you would like to call it. As a kid I never thought anything of it. I was that extremely energetic, always outside, and running here and there and everywhere kind of kid. After a party at a friend's house I came home and discovered these bumps on the insides of my feet. Maybe they had been there all along, but this was the first time I had ever noticed them. And this was the inaugural leap into years and years of being medical mystery.
That was in second grade. It took almost 2 years of doctors visits for them to finally realize that I needed to have them removed. Oh how my feet would ache at night after running around. October brought surgery number one removing an accessory portion of the navicular bone with an accompanied lengthening of my achilles tendon. I was in a cast for 6 weeks and then the physical therapy started. The right foot followed in December, sans achilles lengthening. I was in physical therapy through February. I had to relearn how to walk, and my poor atrophied calves sure needed the attention if I was ever going to be running everywhere again. Little did I know this was the beginning of many physical therapy sessions to come.
The surgery was a success, and time moved on.
I grew up with two older brothers who beautifully taught me the game of basketball. When fifth grade rolled around I was playing with the sixth graders, and continued to play up for some time. I fell completely in love with this exciting and fast-paced game, and I never wanted to put the ball down. However I think my life had a different plan.
It was in 8th grade when the back pain struck and I had to sit out for a week, and the physical therapy started again. My heart broke that day and for the first time I was afraid that my basketball career wasn't going to last forever.
The physical therapy lasted a few months, and turned into me doing aquatic therapy on my own. I became used to being the only one under the age of 65 in the pool. I also got used to the "well, you're too young to be here" statements. Yep. This was my life at that point, and no anger or denial was going to change it.
In 9th grade it got really bad, like cortisone shots regularly (within standards of course), bad. Then there came a day where I could no longer stand up straight without pain. I was sleeping on the couch nightly because it kept me from moving around too much in my sleep, causing even more pain. The summer was a slow flow of rest, with little to no running everywhere like in my glory days. My dad sat me down one day and we came to the conclusion that basketball wasn't everything, and my health definitely came first. I was crushed, but I had to deal with the task at hand. We needed to figure out the problem. Goodbye, basketball.
I took the year off, hoping that with rest and continued treatment I would improve and be able to play again. We were all optimistic. I wish I could say that those high hopes worked, but I don't know if I would be writing this today if it did. In that year my shoulders began to ache. They crackled, popped, and subluxed. I ended up having surgery on the right one hoping it would improve. After 6 more months of physical therapy it was disappointing to say there was no improvement, and over time it has slowly and progressively got worse.
It was junior year that my hands started to ache and my mom's concern grew. We went to the doctor to have some tests and x-rays done. At that point the tests came back negative--which was a huge relief to the both of us. I had always seen these nightmare-ish pictures of rheumatic hands, and at that age it frightened me, quite terribly.
But yet the pain continued.
It ebbed and flowed. There were good days and bad days. After a while however, I was so tired of not knowing what was happening. I was hurting regularly, with no answers to calm my troubled soul. There was only so much ibuprofen I could take. My limit had been about reached. After I graduated from high school I finally brought it up to my mom. "I need some answers," I said one morning after much thought. "It's time to see a specialist." I got an appointment scheduled, but two months of waiting lay ahead of me.
August rolled around and I saw the rheumatologist. He took a look at me, did blood work, ordered x-rays, and then came to the conclusion quickly, and almost without doubt that I had ankylosing spondylitis. We started immediately on prescription NSAIDS to see how that would help.
I was prescribed another NSAID. Once again, no response and this time accompanied by terrible stomach issues. The back pain had spread up to my thoracic spine. My sternum was tight, my jaw ached, my knees buckled, my shoulders, cracked, and my hands and feet felt like bricks.
I started on the biologics: enbrel, humira, and simponi--all with no response. I sure became good at stabbing myself with a needle once a week. I became dubbed "the druggie" however with no response.
Serious. I did two rounds of remicade, and then noticed that I actually got worse.
That doesn't make sense!
From there I got a second opinion from a different rheumatologist. He took a look at me, a young 19 year old, still able to walk, exercise, and do pretty much everything I wanted to, but with this terrible diagnosis. After evaluating me and doing all the normal things that doctors do (x-rays, blood, exams, etc) he recalled the ankylosing spondylitis diagnosis and told me that I have hypermobility syndome. Apparently, I'm a rather flexible individual.
This repeal of AS was an absolute, total, outright relief, but all the pain still didn't make sense.
I continued to see Dr. W to monitor the pain, and continue to get blood work incase anything new came up. I was dubbed "the mystery patient." Literally.
It was May of this year that I got more blood work and the results came back with positive rheumatoid factor. My doctor has this cool thing where you can read your visit summaries and lab results online. I've always found it really handy, but this time it just about crushed my whole entire world. When I saw the 'abnormal' label next to the Rheumatoid Panel I just... I don't have the words.
I guess you can see where everything has led to this point.
So now here I am, a twenty-something wife, college student-- turned writer with rheumatoid arthritis and a mad passion for life! I'm the youngest in an incredible family, and now married to my high school sweetheart after falling in love with him at the age of fifteen. He became my very best friend just a few months after I said goodbye to basketball and has continued to inspire and support me every moment since that first day he said, "hello." I've hiked around, traveled much, and driven many miles. I find solace in the ukulele, and comfort in watching movie after movie. I'm me, and part of me is now this disease called RA.
And I'm okay with that because the fighting of this disease is never going to stop.
I share my story and journey at http://www.runof-themills.blogspot.com
What lifestyle changes have you found to be most helpful in managing your RA?
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