Keeping them guessing
Friends, I’m home!
More specifically, I’m home on the date that was planned upon when booking this most recent trip to Minnesota…AND I don’t have a specific return trip nailed down. I also came home to clean sheets and towels, a freshly stocked refrigerator and a dozen roses. Shoe-in for best husband ever!
Bring it on, 2013.
In other news, I’m still waiting for the unveiling of my Mayo-versary plaque at the clinic. There was a small crisis shortly before I departed and the frozen yogurt machines weren’t working. I’m guessing the clinic was understandably completely involved in this untimely malfunctioning of parts and inadvertently missed a major holiday. Tragic indeed, but understandable.
In any event, as per usual I spent the week being poked and prodded, along with enduring the usual assortment of questioning glances and uttering of confused statements. For convenience sake, let’s start at the top of my body and work our way down…which leads me to my brain.
I’ve been telling my husband this for years, but my brain has now been medically documented as being absolutely gorgeous. In fact, my doctor printed off an image of my brain with the caption “Lydia’s Beautiful Brain” and instructed me to place said masterpiece on my fridge. It goes without saying that this task was accomplished before I even removed my coat…I’m such a good student.
You may recall from a few months ago that there was some major speculation of a brain tumor and/or stroke, so while many of my symptoms remain unexplained (my specialty), it is a huge relief to have my pristine brain documented on 8.5 x 11 paper.
Moving down a bit to my eyes, my MRI did reveal that I have thickening of the tissue around my eyes, which is called Graves Ophthalmopathy. In case there was any confusion, this is a by-product of dear Graves Disease and it goes without saying that it usually affects fewer than 5% of patients. Ya know, me and Barbara Bush.
Left untreated, the tissue continues to thicken, further limiting blood flow/drainage to the eye area and eventually the eyes literally bulge out of their sockets. Friends, let me save you some trauma by strongly recommending that you do NOT Google Image this situation. Holy. Cannoli.
I am in the fortunate/unfortunate position of landing myself right smack in the middle of treatment options. Despite the chronic pain around my eyes, constant blurred vision and heavy eyelids, my eyesight is technically still fabulous (three cheers for my massive consumption of sweet potatoes). Seeing as my eyes are currently not bulging out of my head, I just get to sit back and wait. Since glasses cannot correct this issue, I just have to be careful about making smart choices when my vision is compromised…so for example, I probably shouldn’t use those times to run the blender or chop anything…noted. I am told that in all likelihood I will eventually have to have surgery to correct this situation, ya know, once one or more of my eyes begin to bulge out of my head and my vision is more acutely compromised.
Yes. You read that correctly.
I’m supposed to sit back and wait until my eyes bulge out of my head and I see two of everything.
Moving on, now that we have addressed my gorgeous brain and semi-firmly-planted eyeballs, we can move forward to my rock-star immune system. Let me just tell you that my allergist at Mayo is absolutely, mind-bogglingly brilliant. He has never spent less than an hour with me, and every time I meet with him, I leave feeling like I just took a master’s course in immunology. He literally leaves no stone unturned and thinks nothing of sending me home with microscope slides to conduct a few casual experiments at home and email him the results. This visit also involved him scrolling through the pictures on my phone and emailing some to himself for further study/enjoyment (5 images of my hives, 1 of a bright red cardinal from my parents’ backyard). If it is not already strikingly clear, this man does NOT like when something is out of his grasp and not yet understandable. Enter: Me.
We are still waiting for some pending lab work (also known as the several day urine sample that I lugged with me through 4 states and a rest stop off of I‑95), but at this point, the results don’t really matter too much. It is clear that my mast cells are a hot mess and it is also clear that they would like the root cause of their distress to remain a mystery. Technically, this is termed as Inappropriate Mast Cell Activation Syndrome…which personally I think sounds like my mast cells were poorly behaved and got written up for detention. My doctor is nearly sure that I have TMEP (telangiectasia macularis eruptiva perstans) which is an extremely rare (duh) form of mastocytosis. The absolute only way to confirm TMEP is through an analysis of my bone marrow and my doctor has mercifully opted me out of this testing.
As I’ve said before, names and firm diagnoses really don’t matter much to me anymore. Like anyone undergoing a health crisis, I spent a long time on a quest for a name, a reason…anything, but I moved on from the name-game a long time ago. What matters now is doing absolutely anything in my power to be as healthy as possible and let my body heal as best as it can. Sometimes that ability to heal means taking a leap of faith, going with your gut and opting your body out of a painful procedure and terrifying drugs.
So I’m doing what I do best — I’m keeping them guessing. I’m examining my arms through microscope slides and spending an awkward amount of time staring at my eyes in a mirror. I’m hugging my flower-giving husband and the pillow that I haven’t seen in a month. I’m laughing at the unpredictability of life and learning from the ride.
Bring it on 2013, let’s do this.
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