Posts tagged illness

Huey Lewis Was Right. And So Was I.

   The past four years have been hell. Absolute hell. My body exploded, swelling up like a giant balloon. The pain was so intense most of the time I couldn’t get out of bed. My central nervous system refused to cooperate. My veins & arteries were constantly spasming, interrupting blood flow, leading to cognitive dysfuntion, improper heart rhythms, and essentially, just a whole lot of suckiness. My nerve endings were constantly screaming, every minute of every day.
   My body was tearing itself apart, bit by bit.

   In all that time, my doctors tried everything they could to help. I saw hundreds of specialists (literally), had what felt like millions of tests, took trillions of pills. We got nowhere.

   Through the last two years of this agony, I had a sneaking suspicion about something that I thought might help. But I kept doubting myself. For a while I even thought maybe I was crazy; nothing but wishful thinking from a sad heart.
   I thought that maybe - just maybe - like in all those fairy tales we heard as kids, a kiss might reverse this curse. Maybe all this time I was stuck, like that prince trapped in the body of a frog, just waiting for the right person to come along.

   I talked to doctors about it. I actually had some data to back up my suspicions. At the time, only a single friend believed me & saw any merit in the idea. So he kindly flirted with me long distance. We tracked every piece of information. I weighed myself multiple times every day. After a few weeks, I lost twenty pounds. It seemed to be working.

   But I kept getting funny sideways glances from my doctors. It just didn’t seem to make any sense. So I trusted in their judgement & cast my silly notions aside.

   Then in February, as my blood vessels continued to worsen & I found myself facing a constant game of Russian Roulette with my own cardiac system, I met with a doctor at Johns Hopkins. He seemed to tie together all the loose threads created by myriad specialists. He took each random test result, each sporadic opinion, weaving them together into a tapestry that seemed to finally make sense.
   After 27 years of constant pain & agony, my central nervous system could no longer take it. It was trapped in the sympathetic nervous state - a state of high alert, ‘fight or flight’ - and could no longer return to the parasympathetic state of rest.

   As he said those words & explained each little detail of how the body behaves differently between those two states of being, I couldn’t help but think about my crazy fairy tale. After all, I knew from basic biology there were only two ways to force the central nervous system into the parasympathetic state - vigorous exercise & arousal.
   I started to think, maybe I wasn’t so crazy after all.

   I worked up the nerve to open my mouth, confess my suspicions, and face yet another sideways glance from yet another doctor.
   Except this time, there was no sideways glance. There was no reaction of incredulity & concern for my sanity.
   Dr. Levine cocked his head, leaned against the wall & said, “Hmm… you might be on to something there… Let me think about this.”

   I sat there in silence for what felt like an eternity, waiting for him as he leaned up against that wall & contemplated. Much to my surprise, his conclusion matched mine. Besides, as he said, it couldn’t hurt to try, right? If nothing else, it was far superior to the only other option he could think of - an experimental drug that could either freeze my symptoms & keep them from getting any worse, or… make them drastically worse & kill me faster.

   Finally with a prominent doctor to back me up, I embarked on my search. I had tried everything I could with friends over long distances, but it wasn’t enough. I needed to find a willing partner nearby, someone I could trust. Someone I connected with. Someone who would understand.
   First I searched quietly, asking friends & family if they happened to know anyone in the area. When that didn’t work, I turned to my wonderful band of friends in Twitterland. I kept looking & looking, all the while my symptoms getting worse & worse. In desperation, I confessed my entire story here on my blog, all red-faced & filled with embarrassment.
   Yet after all of that, still nothing. No one. I was just about to give up…

   And then I found Marshall.

   It’s been a week so far. A blissful bubble of a week. I’ve already lost 12 pounds. For the first time in my entire life, I woke up this morning without any pain. I’ve gotten so used to hurting every minute of every day, that occasionally now when I stand up, my legs feel so foreign I fall right back down again. It’s an adjustment, but a marvelous one.

   This morning when I weighed myself yet again, I was overwhelmed when I saw the scale. I’ve lost enough weight that for the first time in four years, I no longer have to say that I’m carrying around over 100 pounds of fluid. I was so relieved, so grateful, so happy, that I immediately started crying.

   It feels like the beginning of the end of a nearly life-long nightmare. As verbose as I usually am, I still can’t quite find the words to encapsulate just how incredibly, joyously happy I am. How relieved I am. How profoundly grateful. For the longest time now, I’ve suspected that the only way to find answers to my illness would be an autopsy. I thought all I could hope for would be to prolong that inevitability as long as possible.

   Now there’s hope. Now I’m happy. All because Huey Lewis was right. And so was I.
   It’s the power of love.

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#Huey Lewis


Choosing Happiness ›

Please click above to check out my friend’s site! Robby is facing a lifetime of illness - something I can certainly relate to. But he is doing his best to remain positive, to choose happiness over despair. He’s trying to transform his dialysis machine, something that could easily be a symbol of pain & self-pity, into a symbol of hope & happiness.

But he needs your help to do it!

Robby is asking for perfect strangers to send him stickers, so he can completely cover his dialysis machine in symbols of happiness from people all around the world. In return, he’ll send a few lucky people gift baskets from his home town of Savannah, Georgia!
I’m still working on the sticker that I’ll be sending to him soon. Please, take a minute, choose a sticker, and send it to Robby. We could all do with a reminder that no matter what trials we’re facing, we always have the chance to choose happiness.

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#good deeds