keeping them guessing

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.

Obvi­ous­ly.

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.