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 absolute 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.
Thank you.
