For the last 15+ years, I have been dealing with what I thought were exceptionally weird medical issues. It had even become a running joke among friends and family that I was the "1 percenter" coming down with every oddity known to medicine, without a single thought that it could be something bigger. The only consistent symptom or issue I had all of these years was joint swelling in my fingers and toes every winter. I had been tested for rheumatoid arthritis, psoriatic arthritis, sympathetic pain syndrome and gout; all coming back negative.
Over time I'd given up going to doctors about the joint issues and just accepted the fact that this was just my "normal". This past winter was exceptionally brutal, the coldest Atlanta had seen in a while and my joints were out of control. I went to my primary care doctor hoping for relief. He put me on steroids and sent me on my way. I had to go back to my doctor a few weeks later for blood work for my insurance discount and my joints were swollen again. He referred me to a local rheumatology center. In my mind, I thought "great, another doctor to tell me they don't know or there's nothing wrong". Looking back, I am glad I kept that appointment.
Over time I'd given up going to doctors about the joint issues and just accepted the fact that this was just my "normal". This past winter was exceptionally brutal, the coldest Atlanta had seen in a while and my joints were out of control. I went to my primary care doctor hoping for relief. He put me on steroids and sent me on my way. I had to go back to my doctor a few weeks later for blood work for my insurance discount and my joints were swollen again. He referred me to a local rheumatology center. In my mind, I thought "great, another doctor to tell me they don't know or there's nothing wrong". Looking back, I am glad I kept that appointment.
When I went to the rheumatologist I was nervous, on a time crunch and getting agitated at the loud TV and patients yelling at each other in the waiting room because they couldn't hear over the TV, but I had my first nighttime trail race coming up and my toes were looking like little Vienna sausages, the mileage I was putting in was getting too painful. I really needed to just stick it out and find out if they could help.
I was taken back to an exam room where I was asked a million and one questions about my life, sleeping, eating and exercise habits, work schedule, family history. The usual, plus some. The doctor looked at my fingers and toes and asked to take blood and xrays. He then said he had a hunch he knew what this was but asked would I mind seeing a colleague of his. I had nothing to lose, so sure. That was the first time I'd heard the word "Lupus". His colleague took one look at my face and asked about the red patches I attempted and apparently failed at covering with makeup. I just assumed I am getting older, this must be rosacia even though I get a full on butterfly rash when I am stressed or drink Gin. After having questions fired my way from both they said they would have to review the samples and xrays and would be in touch. I didn't give it too much thought but I wondered on my way home, what is this "Lupus"? I was curious but didn't give it too much thought.
Wednesday, March 26th. That was a pretty pivotal date for me, the day my world changed drastically. Just after lunch I got the call that confirmed I have Lupus. Ok... so I am relieved to have a name for this and it should be easier to treat, but what does it mean? Then I did what you should NEVER do and I WebMD'd it. BALLS. I needed to find a bubble suit.
I was so distracted the next few days with horrifying thoughts about Lupus. Saturday rolled around and I wasn't nearly as excited for that race as I should have been. I mean, a trail race at night and it's called the Yeti Nightmare?! What's not to love?? I had been so excited for this one, but that day I was not mentally present.
I fell just inside the 2nd mile and I thought "yep, I shouldn't be doing this, I should be at home on the couch taking care of myself". By the 2nd dirt eating incident I was livid. How could I be so careless and put these other runners at risk with my selfishness and inability to stand on my own two feet?? I drove home furious at myself, angry at Lupus, and when I walked in the door and tripped over my simple dog I about came unglued. All I could do was cry. Was I going to have to stop running? What about travel, what about work, what about LIFE? Was this going to kill me? How soon, what would it attack next?
I full on FREAKED out. And then I cried even more over a giant beer.
Sunday morning arrived and I woke happy to find my fire had returned. I was motivated to find resources, to learn more, to kick Lupus' ass. I have a dear friend, Kristen, whose aunt has Lupus. She invited me to join her team for the walk that was coming up in Atlanta. I registered with the GA chapter of the Lupus Foundation and have since met several more people with Lupus. I am amazed at how differently this impacts each of us. My main issue is joints, a new friend has more issues with her kidneys. And we all look "normal", it's funny how often I hear that. The comfort I have been given with this support is immeasurable. I have "new" things come up from time to time and I now have the resources to turn to now and ask if this is normal, what is it, how do I handle it? Reynauld's phenomenon freaks me out still and last week I learned about Scleritis. That was fun, and by fun I mean freaky looking and pretty painful.
This is sometimes a scary place to be, but my doctors have assured me that I can continue to do what I do with travel, work and running unless I am having a brutal flare or something changes drastically.
I win most days, but Lupus has won a couple as well. The hardest so far was my first DNS on a trail half in SC I had trained heavily for but I was fortunate enough to volunteer at an aid station, was surrounded by friends and still able to cheer everyone on.
There will be good days and bad but I get to decide how I let it impact my attitude. I look at it like I look at life in general, like surfing (which I am really REALLY bad at but I love to do!). If I don't like where I am I can always grab my board and move on to the next beach.
This won't get the best of me.
Wednesday, March 26th. That was a pretty pivotal date for me, the day my world changed drastically. Just after lunch I got the call that confirmed I have Lupus. Ok... so I am relieved to have a name for this and it should be easier to treat, but what does it mean? Then I did what you should NEVER do and I WebMD'd it. BALLS. I needed to find a bubble suit.
I was so distracted the next few days with horrifying thoughts about Lupus. Saturday rolled around and I wasn't nearly as excited for that race as I should have been. I mean, a trail race at night and it's called the Yeti Nightmare?! What's not to love?? I had been so excited for this one, but that day I was not mentally present.
I fell just inside the 2nd mile and I thought "yep, I shouldn't be doing this, I should be at home on the couch taking care of myself". By the 2nd dirt eating incident I was livid. How could I be so careless and put these other runners at risk with my selfishness and inability to stand on my own two feet?? I drove home furious at myself, angry at Lupus, and when I walked in the door and tripped over my simple dog I about came unglued. All I could do was cry. Was I going to have to stop running? What about travel, what about work, what about LIFE? Was this going to kill me? How soon, what would it attack next?
I full on FREAKED out. And then I cried even more over a giant beer.
Sunday morning arrived and I woke happy to find my fire had returned. I was motivated to find resources, to learn more, to kick Lupus' ass. I have a dear friend, Kristen, whose aunt has Lupus. She invited me to join her team for the walk that was coming up in Atlanta. I registered with the GA chapter of the Lupus Foundation and have since met several more people with Lupus. I am amazed at how differently this impacts each of us. My main issue is joints, a new friend has more issues with her kidneys. And we all look "normal", it's funny how often I hear that. The comfort I have been given with this support is immeasurable. I have "new" things come up from time to time and I now have the resources to turn to now and ask if this is normal, what is it, how do I handle it? Reynauld's phenomenon freaks me out still and last week I learned about Scleritis. That was fun, and by fun I mean freaky looking and pretty painful.
This is sometimes a scary place to be, but my doctors have assured me that I can continue to do what I do with travel, work and running unless I am having a brutal flare or something changes drastically.
I win most days, but Lupus has won a couple as well. The hardest so far was my first DNS on a trail half in SC I had trained heavily for but I was fortunate enough to volunteer at an aid station, was surrounded by friends and still able to cheer everyone on.
There will be good days and bad but I get to decide how I let it impact my attitude. I look at it like I look at life in general, like surfing (which I am really REALLY bad at but I love to do!). If I don't like where I am I can always grab my board and move on to the next beach.
This won't get the best of me.
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