Nineteen days. I’ve had the most beautiful nineteen days of my entire life. Filled with more happiness than I could ever imagine, thanks to a wonderful man & myriad magical moments with him.
If you haven’t already heard the news that I’ve been shouting like crazy over Twitter, I have a boyfriend! His name is Marshall. Things have gone rather quickly… We only met for the first time on November 1st. Believe me, I always used to shake my head at people who jumped into relationships so quickly, who seemed too terribly antsy to fall in love. I never understood it before.
I take it all back. I get it now.
We still can’t help but shake the feeling that we’re either caught in some kind of time vortex, or are simply dating in dog years. Because it sure as hell feels like we’ve known each other for more like 19 months - maybe even 19 years - rather than 19 days.
Throughout these past nineteen days, so many strange coincidences have occurred. So many magical little moments filled with perfect timing & events unfolding in precise concert. What’s more, apparently these coincidences have been happening long before we ever met.
Only a few days after we first met, Marshall was telling me a story when we first felt a hint in our hearts that maybe there was something bigger going on. The story went like this.
Several years ago, one of Marshall’s sisters was getting married on some private land here in Virginia. They had asked the owner if they could shoot off fireworks, to which the owner replied, “Sure, so long as they’re quiet fireworks!”
Thinking that was a bit of an oxymoron, they decided to just go for it. His Father purchased a massive amount of professional-grade fireworks, rigged in mixed sets. Since Marshall was the only one underage at the time & didn’t get to partake in the libations, he was given the coveted duty of setting off the fireworks.
Just after they set off the first rigging, they suddenly saw a frantic figure racing toward them across a wide open field, waving their arms & shouting to stop. The fireworks had spooked the horses, so they were left with a huge cache of fireworks. They easily could have supplied a small city’s Independence Day celebration with what they had left.
Not wanting to be wasteful, Marshall & a friend later figured out a sneaky way to use up the remaining fireworks. He discovered a rather sizeable park situated right behind a middle school near where he lived at the time. The entrances to each property were on completely opposite roads & quite far apart. He parked at the middle school, carried the fireworks through a thicket into the park, dug a trench, and set them up. Once lit, the fuse lasted just long enough for he & his friend to make a mad dash back to the car, watch the fireworks, then leave the middle school just as the police arrived on the far side of the park. They were free & clear!
As he recounted this story, a vivid memory popped into my mind. I started to get a quizzical look on my face & could no longer hold in my curiosity. Close to the end of this story I started asking seemingly random questions.
”Was this in Reston?” Yes.
”Were there six fireworks?” Um, yes.
”Around what year would this have been?” Uhh… 2005 or 2006.
”And it wasn’t anywhere close to the Fourth of July, Veteran’s Day, or any other holiday that could possibly be celebrated with fireworks?” Nope.
”Which side of Reston was it on? If you’re driving on the Dulles Toll Road, is it on the same side as Reston Town Center?” Mmhmm.
”From that vantage point, would it look like the fireworks were set off from a little ways back from the tall buildings, but still visible from the road?” Yes…
Clearly at this point Marshall was a little taken aback. He asked what exactly I was getting at. At which point I recounted a memory of my own.
Around that precise time frame, my Father, brother & I were driving home along the Dulles Toll Road - a major highway running from the National Beltway out through the Northern Virginia tech corridor. Just as we passed the town of Reston, with its gorgeous tall buildings, I looked out my window & saw a sudden series of six beautiful, gigantic, professional fireworks. Only six.
It seemed incredibly odd to met at the time. I asked my Dad if he knew of anything was going on in Reston Town Center that night. Reston Town Center is a large shopping center situated right by the highway. Imagine if Disney tried to replicate a few blocks of New York City; that’s Reston Town Center. Large tall buildings, cute shop-lined streets, and a large plaza in the center with a fountain & a covered theater area. They frequently host concerts, festivals, and even ice skating in the winter. My natural guess was that something fun was happening, and that we were missing it!
But as we drove by, I started to think, the fireworks seemed a little too far away to be coming from Reston Town Center itself. I tried to think what other areas in that part of Reston would be shooting off fireworks at such a random time of year, but nothing came to mind.
As soon as we got back home, I immediately started googling. After all, if there was something fun going on, I didn’t want to miss out. But much to my surprise & dismay, nothing came up. I simply couldn’t find a reason for sudden professional-grade fireworks.
Turns out that reason was Marshall.
Naturally, as we compared our memories, went over additional details - all of which matched up flawlessly - we were both quite surprised. Impressed & a little bit overwhelmed, we both decided that Marshall somehow knew his love would drive by at just that moment, so he put on a little show just for me.
If only I had driven toward those fireworks, maybe I would have found him so much sooner.
Since the night of that rather awe-inspiring discovery, we’ve been surrounded by similar magical moments, both large & small. For instance, when Marshall told this story to his Mother, they heard random fireworks going off in the neighborhood. In November.
Then again tonight, another magical moment happened out of the blue while we were driving back from a quick shopping trip. As we pulled up to a red light, Marshall looked me in the eyes & told me he loved me. Just as we kissed, Sirius XM started playing ‘I’ve Never Been in Love Before’ from Guys & Dolls. Not only did the lyrics describe so perfectly the way we both felt, but we were watching ‘Guys & Dolls’ when I felt the very first inkling that I was falling in love with him. We were caught up in the moment for a few seconds, before yet again we started laughing at being smacked upside the face by the universe’s impeccable timing. For about the hundredth time, it couldn’t be more obvious that there’s something a little bit bigger going on than we currently realize.
Although we did get a good giggle out of the idea that - between the fireworks, this, and everything else - Marshall is clearly a remarkable romantic planner! I can’t imagine how difficult it must have been for him to get the timing of the red light just right, let alone convince Sirius XM to play that specific song at precisely 7:26pm! Then to ensure no other cars cut us off on the way there! He is quite a man though, so hey, I wouldn’t put it past him!
In all seriousness, it is quite funny how the universe works such things out. Neither one of us was looking to fall in love. Hell, I was in a way actively trying to avoid it. I haven’t exactly felt it fair to fall in love given my current medical circumstances. But as it turns out, the universe had other plans. And now it seems to be taking great pride in reminding us on a nearly daily basis that it’s in charge & oh boy how we were wrong!
Although, of all the times in life to be proven so thoroughly wrong, I’m incredibly, eternally grateful it was this time. Because I’ve never been happier & I never in a million years thought love could feel this way.
Let alone in only nineteen glorious, miraculous, serendipitous days.
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.
I find myself stuck in a very strange, yet perilous situation. I’m in need of help but don’t know where to turn. What I need is more than a bit embarrassing. Yet my life literally hangs in the balance. I have decided that saving my own life is worth any potential embarrassment or humiliation that may come from sharing my predicament online.
So here goes nothing.
My name is Heather. I’m 27 years old. And my body is destroying itself.
I suffer from a very, very rare genetic condition called Dercum’s Disease. Despite having been discovered well over a hundred years ago, it has not been very thoroughly studied. What’s more, the few doctors who have researched the disease have stated that I have the absolute worst, most advanced case of the disease they have ever seen in someone so young.
I am in absolutely unknown territory, battling a potentially fatal disease with very little information to help me. My body has taken me beyond the realm of what medical science can offer me.
To give you a basic primer in Dercum’s Disease, the root of the condition is a genetic glitch that leads to the mutation of certain fat & protein cells in the body. These cells are required for multiple bodily functions. For instance, your liver uses fat cells in order to do its job.
Naturally, when those cells are mutated, that alters the way the liver functions. Which then has a cascading effect throughout the rest of my body. If the liver’s function is slightly altered, that affects how my kidneys function. Which alters my bladder, my adrenal gland, my endocrine system, etc. Until the entire chain of dominoes has affected each & every part of my body.
But that’s not even the worst part of the disease, as I have since come to learn. The disease also alters the way nerve endings form in connective tissues throughout the body.
In short, in any given spot on my body I have five to ten times as many nerve endings as normal. Not only do I have too many nerve endings, but they’re also malformed.
I liken it to the sense of hearing. Imagine if someone turned up the volume on your sense of hearing ten fold. Suddenly average every day noises would become deafening screams. It’s like that for my sense of touch. Absolutely every inch of my body hurts all day, every day. I feel everything too intensely. Sitting on a fold of fabric can feel like sitting on a rock.
As I age, this issue is getting worse. Much worse. I thought the only consequence of these plentiful, malformed nerve endings would be I’d have to continue to deal with unbearable pain. I’ve never had a single day of my life where I was free from pain. I figured I’d go on living that way & I could manage.
But now my nervous system is starting to show signs of wear. And it’s starting to take the rest of my body downhill with it.
Starting in November of 2010, I started seeing this.
Yeah. Not exactly a happy sight.
The first time this happened it was 3 in the morning. I woke up to go to the bathroom. I was all bleary-eyed until I went to wash my hands. I opened my eyes as I put my hands under the running water, only to scream when I saw my veins lit up like neon. It was so startling that I thought I was hallucinating. But I wasn’t.
My veins stayed that way for several hours. The longer it lasted, the worse it got. My soft tissue started to feel as if it was slowly turning to stone. Eventually I started to lose motion in my fingers. Needless to say it was quite frightening.
Over the next several weeks it kept happening in random areas all over my body. On my thighs, my feet, up my arms.
But the scariest moment was when it happened up my chest, neck & face. As that sensation of turning to stone returned, I started to lose my mind. I could feel my consciousness slip through my fingers. My memory was fading, I found it harder & harder to speak. The left side of my face began to sag. Sanity was walking away from me, step by step.
My brain was turning to lifeless stone just as surely as my hands had. It was absolutely terrifying. Like having a stroke in slow motion.
I’ve spent the past year and a half trying to figure out why my veins are behaving this way. The day before yesterday I finally got an answer.
It’s because of the very same excessive, malformed nerve endings that cause my pain.
Basically, my autonomic nervous system is all messed up.
When a normal person is injured, when you feel pain, the nervous system responds a certain way. Your body produces endorphins to counteract the pain. Your immune system responds to the area, attempting to heal you. The nervous system alters the way blood flows to the area, dilating blood vessels & the lymphatic system at the site of the injury.
What do you think would happen if every inch of your body was sending pain signals for every minute of every day you were alive?
That’s what’s happening to me. After 27 years, naturally my body’s worn out. Those signals are getting erratic, the response is getting messed up & burned out. My body’s natural production of endorphins is shot.
And my blood vessels, well. They’re dilating & contracting to extremes at all the wrong times.
It’s happening all over my body, at random. Including in my brain. It’s already been bad enough to cause stroke-like symptoms. And it’s getting worse.
In addition, it also explains why my body is swollen all the time. For nearly four years my doctors have been trying to figure out why my body is constantly retaining fluid. Now, thanks to doctors at Johns Hopkins, we think we’ve figured out why. Given all the pain signals, given that my body is always stuck at a state of inflammation it’s no wonder I’m swollen.
The problem seems to be that I’m stuck in what’s known as the Sympathetic nervous state - the body’s natural response to pain. I can’t seem to get back into a state of rest - the Parasympathetic state - precisely because of all those constant nerve signals. When in the parasympathetic state, the regulation of blood vessels & the lymph system becomes more constant. The body calms back down & your body rests.
It seems my body can no longer cycle back into the Parasympathetic state on its own. It has to be forced, kickstarted like a car with a dead battery.
There are only two ways to do that.
Vigorous exercise & sexual arousal.
Vigorous exercise is out, precisely because it triggers more pain signals & ultimately just makes everything worse. Which leaves only one option.
The interesting thing is, I’ve already proven that arousal does indeed have a positive effect on my body. Although I haven’t had a boyfriend for several years, a friend of mine did start flirting with me unexpectedly one night about two years ago. We flirted for a couple hours, then all of a sudden I had to pee. BAD.
At that time I had been keeping a daily weight journal. I would weigh myself three times a day, morning, noon, and night. I had just weighed myself before the unexpected flirting began.
When I suddenly had to run to the bathroom, I became a bit curious when it seemed like I’d been sitting on the toilet for what felt like 10 minutes. So when I was done, I weighed myself again.
I lost three pounds. In one trip to the bathroom.
I was baffled. I thought maybe the scale was off. I told my friend what happened. Naturally he didn’t mind, so we kept flirting.
It happened again. This time I lost five pounds.
I talked to my Doctor about it. He had no explanation at the time as to why that was. But we were so desperate to find some way to get rid of the edema that was swallowing my body that we figured it was worth a shot.
My Doctor helped me develop a scientific way of tracking the weight loss. Using the pain scale as a model, I used a scale of 1 to 10 to track just how aroused I became. We timed each “flirt session”. I weighed myself before each “session”, before each trip to the bathroom, and after. I kept extensive records of everything.
With the help of my friend, we’d flirt online at the same time every evening, every other day. The thought was, we’d make it a habit, to see if eventually my body would start to anticipate it and maybe even start processing the fluid on its own.
After one month, I’d lost 20 pounds. The next month, I lost 30 pounds. Whatever it was, it was working.
I tried talking to other doctors & specialists about it. But naturally, I got quite a few crazy looks & no one wanted to listen.
That is, until the day before yesterday at Johns Hopkins. Someone finally listened & thought long enough to figure it out. They tied it all back together for me.
It makes total sense. If my body is stuck in the Sympathetic nervous state, if it’s constantly at a state of inflammation, sexual arousal would push my body back into the Parasympathetic state. It would force my body to be at a state of rest. It would regulate my erratic blood flow & lymphatic drainage, causing the edema trapped in my soft tissue to finally cycle through my kidneys the way it properly should.
The swelling comes off. My veins regulate normally. Endorphins get produced to calm down my pain. My body finally gets back to a state closer to normality. I finally get a chance to calm down.
You’re probably asking, great, so why don’t you just make out with a friend & take care of it?
Well. I don’t have any single male friends nearby.
Which is why I’m writing this embarrassing blog entry, putting the intimate details of my medical history up here for all the world to see.
I know this sounds ridiculous. Like the plot of the world’s most unbelievable porno. But I swear on my life, it’s the truth.
That’s my story. That’s what I need. I’m a damsel in distress & I don’t know where to turn.
If you think you can help, or if you know a kind-hearted, healthy, willing, honorable young man in Northern Virginia who would be willing to work with me, it would mean the world to me. It would literally save my life. The blood flow issues are quickly getting worse. I’ve already had the equivalent of two strokes. If it continues to progress I could end up with serious brain damage or even death.
I want my life back. I don’t want to be miserable & in agony for every minute of every day. I want to look like myself again.
But most importantly, I don’t want to die. It’s worth the embarrassment to keep myself alive.
I just can’t do this on my own. (Believe me, I’ve tried. I’m just not wired that way.)
Please. I’m begging you. I need help. I need an honorable, trustworthy man who’s willing to help save my life.
If you think you can help, please, please email me - HLawver AT gmail DOT com. Or tweet me, @HLawver.
NO creeps, please. I’ll be able to spot you right away, so don’t even try.
Update: September 23, 2012
After a plethora of questions since posting this plea, I thought I would add an update for the sake of clarity. Thus, here are a few important details.
First & foremost, I am NOT looking for sex! In fact, intercourse would be both dangerous & counterproductive, for a whole host of reasons I don’t much feel like getting into at the moment.
Therefore, please know that all I’m looking for is kissing! Basic make out stuff.
The overall goal with this particular plan is to attempt to retrain my body to get back into the habit of entering the parasympathetic nervous state on its own, as well as again producing natural endorphins on its own on a regular basis & in higher quantities.
In order to achieve that goal, my doctors developed a basic strategy. The idea is to achieve a state of arousal on a set schedule. The idea being that eventually my body will acclimate to the idea of entering the parasympathetic state & producing endorphins at set, specific times, until eventually my body will anticipate that state & then hopefully achieve that state on its own again.
In order to do that, I need someone to basically make out with me on a schedule. Starting out slow, maybe twice a week. For example, every evening at 7pm for a set amount of time, doing the bare minimum necessary to achieve a state of arousal. Then as my body gets used to that, increase the timing to maybe every other day. My doctor’s looking at it almost the same way as if prescribing pain medication - you start out with the lowest dose possible, because you know that eventually your body will get used to it & require higher and higher doses. At least, that’s the way they described it to me, which I suppose makes sense.
So that’s the basic idea. Making out on a schedule until my body can hopefully enter the parasympathetic state on its own again.
Now to answer some basic questions I’ve been asked a million times:
Q: Can’t you handle this on your own? Sorry, nope. Believe me, if I could take care of this on my own in any way whatsoever, I would gladly have done that before going through the embarrassment & frustration of trying to find a make out buddy. Trust me, I’ve tried absolutely everything I possibly could. Nothin’ works.
Q: If that doesn’t work, how do you know make outs will? I don’t. I’m just holding out hope that it will because that’s the last thing left to try. I have to hold out hope, though, because this is my last shot. It’s the only thing left to literally stay alive.
Q: Don’t you have any male friends around who can help? Well, all my male friends are married. That’s just… no. Nu huh. No way. I do have multiple very lovely single male friends, but they all live far, far away & I can’t afford to fly them out here for months on end to make this work. I really, really wish I could, cause that would be a helluva lot easier & less embarrassing.
Q: What about meeting people at bars & stuff? I’ve had an impossible time trying to meet people because my doctors have me on bed rest. I spend pretty much all of my time stuck in my room. Kinda hard to meet people that way. Pretty much every time I move, I hurt. Every time I hurt, inflammation gets worse. When the inflammation gets worse, the vein issue gets worse. So when I go out of the house, I’m in intense pain & I’m not exactly at my most presentable. That also makes my situation worse & prognosis worse. So I’m stuck in a total catch 22. I need to meet someone, yet going out to meet someone makes my situation ten times worse. Hence why I’m turning to the Internet.
Q: Are you expecting the make out buddy to be your boyfriend? Absolutely not. I don’t expect any serious commitment out of this, nor do I even necessarily want it. I don’t expect you to love me. I’m not expecting you to act like a boyfriend. Although naturally, this whole situation would be much easier if we do actually like each other & get along. :)
Q: What age range are you looking for? I’m pretty open on that. Again, since this isn’t a relationship deal, I really don’t care. I have friends in a wide range of ages & in some ways, I’ve always gotten along better with those older than me. I think that comes from chronic illness. It tends to cause maturity levels to speed up early on, having to face your own mortality & such. But anyway, yeah, I’m open to a pretty wide range. If I had to put a specific number on it, I’d say somewhere between 20 & 40. But that’s not absolute, by any means.
Q: What other requirements are there? The biggest requirement I can think of has to do with preventing infections. My immune system is HIGHLY compromised. If I get a cold, it can literally last six months. So I would have to ask that whoever my make out buddy is, that they be extremely, extremely careful about avoiding anyone who’s sick, washing their hands regularly, etc etc. Aside from that, I do have some allergy issues. I’m highly allergic to cigarette smoke, so I’m afraid I can’t be around smokers. I also can’t be around colognes or anything with a really strong scent. But aside from that, I think that’s pretty much it. Oh, and of course, there is the matter of living close enough to make this whole situation workable. I live in Northern Virginia. Don’t wanna say more than that for now though.
Thank you again!
Update 2 - October 19, 2012
I’m very sad to report that I have yet to find anyone willing to help. Hell, I haven’t even heard from anyone! At all! And I’m running out of time. Just look.
That photo was taken just three days ago by a doctor who performed a Tilt-Table Test on me, to evaluate another aspect in which my autonomic nervous system is responding inappropriately. He is now the fourth doctor to have witnessed & documented my symptoms. I have the medical records to prove it.
Please, I’m begging you. Help in any way you can. I’m quickly running out of time.
Update 3 - November 11, 2012 - Calling Off The Search!
I found someone! Finally! And he’s very nice. :) So we can officially call off the search. My embarrassing plea has been answered. More details to come. :)