Beyond the Yellow Tape

Recently, a friend emailed and playfully chastised me for not updating my blog lately. "How am I supposed to know what you are up to?" she kiddingly asked. I laughed and we scheduled a coffee (aka soy milk) date, but it all struck me as odd. The blog posts have always flowed naturally - both when to write and the content to discuss, so it has never been something I have really "scheduled" in the past. I have learned through this journey that writing, for me, is cathartic. It is a way for me to sort out my emotions and plans, as well as a means of connection and communication with my family and friends. So the fact that I hadn't been writing, and hadn't even noticed, was a little odd.

It dawned on me later that I had been subconsciously avoiding this blog. I had been shying away because I didn't have anything positive or exciting to share, and that made me feel like a fraud.  When I started this blog, I committed to sharing my journey. All of my journey. Which means it would be hypocritical if I didn't share my struggles along with my triumphs. You see, 99% of the time I am able to approach life in a positive and confident manner, knowing that I can take a deep breath and handle whatever comes my way. I laugh and I joke and I take comfort just knowing that this is how I cope. It's who I am and who I've always been. I find being miserable...well...miserable and I want nothing to do with it. 

But that doesn't mean that there aren't any exceptions. It doesn't mean that I can forge ahead of every struggle without a little time in the 1%. Even as I'm writing this, I'm battling with the feeling of being ashamed of this moment, so this blog post tonight is also my attempt to overcome that feeling and let myself be human. 

Truth be told, I'm tired. 

Like I stand at the bottom of the stairs and question whether or not I have the strength to walk up kind of tired. 

And frankly? 

I'm tired of being tired. 

This entire journey has been about slooooow progress. And while I recognize that adopting my inner sloth is what my body needs, it isn't always easy to accept, especially the constant back and forth. Ya know, the dance where I take 8 (ridiculously slow) steps forward, followed by 7 (terrifyingly speedy) steps back. I know too much about my body to ever erase all of my progress and go back to the complete beginning, but sometimes it seems pretty darn close. 

Before I left for Mayo in December, I was, all things considered, as healthy as I had been in nearly two years. I was eating more, doing more and feeling like things were really moving forward. Then I traveled, for medical excursions and holiday celebrations, for 6 weeks. From Virginia to Minnesota to Massachusetts to Pennsylvania to Virginia to Pennsylvania to Minnesota to Pennsylvania to Virginia to Pennsylvania to Virginia. 

Right.

So it was no shock to me when I finally got home and collapsed in a heap. I slept for an insanely long time. Over and over again. I rested and juiced and took my plant-based vitamins and did everything I could to let my body heal. I had absolutely no interest in doing anything at all...which for a rather gregarious person, is usually the tell-tale sign that I need to rest. So I did.

But now I'm ready to be recovered. And I'm not. In fact, I think I may be the only person in America who dropped five pounds over the holidays and can't get it back on.

It's not like I haven't been here before. I have. Many times. I know the signs - I lose weight, my hair falls out, my nails break, my muscles weaken, I'm exhausted, I feel full after 2 bites of anything, yadda yadda yadda. 

I know the signs of a major relapse. 

But it doesn't make it any easier to accept.

I know I'll be ok. I'll continue to do everything in my power to get my body healthy. I'll juice and I'll exercise and I'll rest and sloooowwly, I will regain the progress that was lost.

I know that someday soon I'll go bounding up the stairs again.

But for now, for right this moment, I'm just going to be tired. And that's ok.

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.

Happy Mayo-versary!

Happy 2013 and happy Mayo-versary!

Yes friends, it has officially been one year since the start of this blog and the rapid increase in my frequent flier miles.

Now, imagine my shock today, when there was not a personalized red carpet leading into the clinic and no one showered me with sparkly confetti upon entering the elevator. I mean, I wasn't even offered free frozen yogurt for a year!

Sigh.

Maybe they are waiting until the end of this stay? This Friday I'm sure there will be the "big reveal" of a life-size sculpture and "Best Patient Ever" plaque. I better make sure my yoga pants and fleece are ironed...the paparazzi is sure to be there.

In any event, I am back in lovely Rochester, MN, where the high today is 16 degrees Fahrenheit (this is actually a major plus, when I was here in December, it was a high of 1...). Tomorrow I have appointments with allergy, neurology and neuro-opthalmology and Thursday I have a follow-up with my internist (sidenote-my Dad calls her my "quarterback." The poor woman is in charge of coordinating all of my care. I owe her a lot of cookies). Obviously Friday is free of appointments due to the massive celebration for my Mayo-versary. Duh.

In other news, this past Friday, I saw an ENT (ear, nose and throat, or otolaryngologist for you fancy pants out there) in Philadelphia who specializes in all things relating to the thyroid. I will admit, I was very hesitant (read: crabby) about going, as I must admit to being a little doctored-out. That being said, the appointment was set up by a very dear friend, so I decided to give it a shot (read: stop being a wimp) and boy am I relieved that I did! The doctor was incredible and was able to look at the situation in a way that no one has been able to thus far. In a matter of minutes and with a very brief examination, he looked at me and said, "So your larynx is tethered."

Oh. Right.

Can we, um, un-tether it?

If you look at yourself in the mirror when you swallow, you'll notice that your larynx goes up and down. Likewise, if you continue to gaze at your neck while projecting your voice, singing, speaking, etc. you will notice even more movement of the little box of wonder. Suffice it to say, these things cannot happen if my larynx cannot move.

Apparently a larynx can become tethered with severe Grave's Disease. When your thyroid is inflamed, it pushes down on the larynx and all of the surrounding muscles. Over time, your body slowly adapts to those changes and the muscles tighten up to try and protect the vital organs (reason #2304982039840 why our bodies are absolutely brilliant). When I had my thyroid removed, the stress of the surgery and the massive amounts of scar tissue clamped everything down further, and now my larynx is frozen.

There are a few options for treatment, but really only two worth mentioning (ridiculously vigorous massage doesn't really apply when the scar tissue is over your windpipe...). Option #1 is another surgery and option #2 is injections of steroids every 4-6 week to try and release the muscles and break down the scar tissue.

I think the choice is rather obvious.

Unless there are any objections from my doctors here at Mayo or my endocrinologist at home, I will start the injections on the 18th and go from there. They are supposedly super painful, but the doctor is very confident that they will enable me to swallow again. He can't promise that the injections will allow me to sing again, as he thinks there may also be some further nerve damage, but it should certainly make the situation a bit less severe.

The most common side effect of the injections, other than the obvious pain and bruising, is that they tend to make the scar bright white. Luckily for me, as the doctor so kindly pointed out, that won't really matter with my skin tone....

Hey, being Casper can have its advantages.