First published on April 10, 2012 at 12:20 a.m.
Lately I've been feeling a certain kinship to one of my favorite childhood PBS shows, "Where In The World Is Carmen Sandiego?" That show was so awesome. You learned stuff from it, you chased after a world-class criminal, and it had ROCKAPELLA as its House Band. Okay, I just found a clip of the theme song on YouTube... Holy Crap. It's STILL awesome. I'll re-post it at the bottom of this update because it's totally worth watching. Bonus: I'd completely forgotten about the one duder's super sweet mullet-braids. It's a must-see ♥.
Anywho, lately I've been feeling like my body is The World and my Mystery Illness is Carmen Sandiego. And the doctors... they're the super smart Middle Schoolers that just can't seem to catch Carmen Sandiego, even though they're hitting the buzzers at the right time and wearing those awesome leather jackets. My Mystery Illness/Carmen Sandiego has been chased through the departments of Neurology, Infectious Diseases, Auto-Immune Disorders, Rheumatology and a few other places around The World. Currently the super smart middle schoolers/doctors think a clue to Carmen's whereabouts might be hiding in my lymph nodes. And so, a series of CAT Scans are in the process of being scheduled, per request of the middle schoolers from the department of Rheumatology.
My switch to this department came last Friday, when the Infectious Disease doctor I'd been working with called me and informed me that if I came in and had this once certain test run - and it came back elevated - we would finally have our diagnosis! Now, although I have always been famous for being a shinning optimist, five weeks of dead ends had led me to be Hopeful without Getting My Hopes Up. I guess you can say that I have begun to temper my Optimism with Realism, but have managed to do so without becoming Jaded. After getting off of the phone I went to the lab, had my blood drawn, waited for the results, and TA-DA! Everything came back normal. Even so, the ID doctor still wanted to try to get me in to see the rheumatologists in town. Why? Something to do with auto-immune disorders with a possible serving of musculoskeletal disorders on the side. When I mention the word "rheumatologists" we all think of "rheumatoid arthritis," so before you worry about that I'll say that thus far, no doctor has thrown arthritis at me as a possible culprit. I'm not really sure what exactly the rheumatologists are looking for, and in all honesty, until we get a test with conclusive results, it doesn't really matter. All we know now is all we have ever known: I have incredibly high levels of inflammation that continue to climb and suggest my body is fighting something, something that we might as well just continue to call Carmen Sandiego, for all that they have been able to deduce.
Interestingly enough, my symptoms have shifted around a bit. My legs felt stronger all last week then they had felt the entire month prior. And the numbness in my hands and feet seems to have ever so slightly decreased! However, the strength in my arms has gone down a goodly bit, and I've started dropping things. The spinal headaches seem to have completely ceased (REJOICE!!!) but I've started having chest pains and my mouth has suddenly erupted with painful sores that have turned eating, smiling, talking and yawning into harrowing experiences. So, overall I'm still suffering from various ailments, but the ailments themselves seem to be changing. Oh variety, you are the spice of life!
Thankfully, I think I've gotten a good grasp on the new eating-and-napping cycles my body has slipped into. As mentioned in my last post, I've found that I need to lay down and rest every few hours, even if I've done nothing but watch Hulu all morning. Rest Time has become a non-optional, crucial component of my emotional stability, and I have learned to respect it. Eating small meals/snacks frequently is also totally clutch. If I don't eat with a certain amount of frequency, I start to get dizzy, nauseous, sick and sad. In the same vein, I can't eat very much at one time. At best, eating a regular sized meal makes me slip into a total food coma (it's like every day is Thanksgiving!). At worst I get... really, really sick. Balance is the name of the game. And since the doctors are busy playing Carmen Sandiego, I spend a lot of time playing the Balance Game. It's like the one thing that I, CORY, can actually do for myself. Balance helps to keep the crying jags at bay. Balance also helps me appreciate the little things better. Take for example last Friday, when the test that was supposed to magically give me my mystery diagnoses came back "normal." Usually, getting said results would cause me to burst into tears. BUT, that morning, for the first time in a month, I had put my pants on WHILE STANDING UP. This is actually a pretty big deal. And I am not above treating my toddler-like accomplishments with the same positive reinforcement and reverence usually reserved for, well, toddlers. So, even though the results were once again inconclusive, I did NOT burst into tears because I had napped, snacked, and put my pants on while standing that morning. So yeah, those little victories that pop up throughout the day? That shit's important ♥.
Another important thing that happened today was that I had my first meeting with a social worker to help me figure out things like insurance vs. COBRA vs. Medical Assistance vs. Minnesota Care, as well as how to apply for Unemployment in the face of the eminent job-firing / forced resignation that is most likely going to occur this week (long story). I'm in the process of filling out various complicated applications for various programs that should be able to help me when my insurance runs out at the end of this month. I am incredibly grateful that I have the good people at the Lake Superior Community Health Center to help me navigate a bunch of previously uncharted financial waters. And a big fat special thanks goes out to Stephanie Hogenson for pointing me in their direction! ♥
At the end of the day, while I am obviously frustrated that the doctors are still stumped, I am grateful that I feel better than I did a month ago, grateful that I'm on the road to getting some much needed financial assistance, and grateful that I can manage my frustrations with the right balance of naps, snacks, and time with friends and family. My super awesome friends and family here in Duluth have been really wonderful about checking in on me frequently, inviting me to social outings, and even driving all the way out to my house to visit me when I'm too tired to make it into town myself. And all of you guys - your love and support has been HUGE. I can't say that enough. Let me put it this way - if my life has indeed turned into an on-going season of Carmen Sandiego, then you guys have, over and over again, demonstrated that you have the power to cheer me up as quickly as the Carmen Sandiego theme song does. In other words, you guys are like my Rockapella ♥. I really can't put it much better than that :)
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