Chasing the Cure

I am a TV watcher to the nth degree. When I was an itty-bitty kid, I could spot logos and sing theme songs way before I should have. My teen years were more hit or miss but I still remember the moment MTV was born- “Video Killed the Radio Star” anyone? Then I became a mom and after Barney, Sharon,Lois and Bram, and Carmen Sandiego the TV went off. There were a lot of years where I was too busy; working 80 hours a week, raising a pre-teen then teenager, going to school and being a wife that television fell to the wayside unless I remembered to set it on my VCR-remember those? Once my life took a major turn I found television was much better quality than I remembered overall. I actually rediscovered my love of TV when my health started to go nuts. In February 2005 (Superbowl Sunday to be exact) after weeks of tests and pain I landed in the hospital with pancreatitis stemming from serious gallstones. During the 5 days I was there I had room by myself and I would wake up in the middle of the night before my late night pain med and flip on the television. It was then that I found the Food Network. During my week of recovery, laying on the couch in between dozing I had the tv on day and night. Six months later I was diagnosed with RA and began this long medical journey. From then on any time I have a flare, or I am sick or whatever, I am cuddled up in front of my TV and the rest of the time I wear my DVR out! Now, I realize that there are not a lot of people that watch like I do, so there is an actual reason that I am talking about this today.

For about a month now TBS and TNT have been advertising a ground-breaking series beginning next month that could help every single one of us in the #ChronicIllness community. This 10 episode series is called Chasing the Cure. Hosted by esteemed journalist Ann Curry, Chasing the Cure seeks to harness the power of crowd-sourcing alongside the medical community to find answers for people who are living with debilitating illnesses that are undiagnosed or may be misdiagnosed. I am so fascinated by the possibilities presented by this project and I am wondering if we can get some insight to our own issues as we watch and follow along on the interactive website. I even made the decision to submit my information to see if we can find out what causes our autoimmune system to go so wrong in so many ways.

Chasing the Cure premieres on August 8th on both TBS and TNT at 9pm. It can also be streamed live on either station’s app. The interactive website can be found here: https://www.chasingthecurelive.com/ If you are interested, you can sign up and be a part of the crowd-sourcing and there’s still time, if you are so inclined, to submit your story. If you do, let me know! I would love to follow your journey.

Random Swelling, Random Thoughts …

Do you have somewhat random swelling? My ankles and feet like to swell, especially when I am on them a long time or when it’s super hot and humid out. My ankles become cankles and my feet look like softballs with little round appendages. Summer in Kentuckiana while I am hard at work? It’s a perfect storm and a relatively painless way to flare.

I am not here to complain about it. It doesn’t necessarily hurt. Once they are fully swollen it’s a little tender to walk on but it’s only really uncomfortable when I try to put on shoes, which with the whole working thing, is unavoidable. What’s interesting is how it feels when it’s happening. It doesn’t matter if it’s when I take my shoes off after a long day or if it happens overnight it’s such a strange sensation.

I woke up around 2 this morning. I started rousing because I was swelling and my ankles were getting stiff but once I moved Fen took a flying leap on top of me because, of course, when Mommy moves it must be time to get up! I let the puppers in and out and then plopped back down to try to go back to sleep. It’s at rest that I am most aware of what’s happening to my appendages. So how do I explain this? As the sub dermal tissue begins to grow inflamed, you can actually FEEL the skin over top stretch bit by bit. It’s that part that kind of weirds me out. Slowly, slowly, over several hours, the skin makes room for the tissue beneath as it grows inflamed. Stretching like a small latex glove over large hands, before eventually easing into quasi-normal. I say quasi normal because since I was diagnosed with RA my feet have grown a full size and a half, two and into a wide when I am swollen.

It makes me wonder- because random tendrils of thought are the way my brain goes- I wonder if this is the way our skin stretches when we gain weight- only much, much, much more slowly. Having gained more weight in the last half dozen years than I would ever publicly admit and with little success in shedding it, I wonder- if that stretching of the skin were to happen as quickly as my random swelling- would it serve as a “warning” to watch what we put into our bodies? Or would we perhaps learning to ignore it like we do the proverbial “burrito baby”? I am sure that’s a question that will never be answered but in the meantime, perhaps it can roll around in the back of my head when I crave dessert.

Today’s moment of gratitude is for the awareness that we learn when we are diagnosed with a chronic illness. Before this I took aches and pains as a sign of the need to slow down but never took them seriously and rarely saw them coming. Now, I find that I can anticipate when a flare will start. More importantly I can feel when I am pushing too hard early enough to make a decision as to whether to push through or to back down. It’s a gift that I would never have been given had I not had to learn to slow down and take care of myself. I have to be thankful for that.