Numismatics J/K (Or, a recent diagnosis of Ehlers-Danlos Syndrome)

While my primary intention with this blog is to chronicle my life as a gay male living with Crohn's disease, I wanted to take a quick minute to explain my health history in more depth. I was perpetually the sick kid. Most notably, as a young infant and toddler, I suffered severe environmental allergies, and to this day I pop a Zyrtek (Cetirizine) on the daily. Even if I miss a day and the pollen counts are high, my skin itches, throat tickles, and my eyes inflame and turn red (not great for a contact lens wearer). I was diagnosed with Benign Rolandic Epilepsy in kindergarten, and had seizures (only a few grand mal ones, though they were very, very bad) and chronic tic disorder until things resolved around the age of 17, as BRE usually does. It delayed me being able to even attempt to get a learner's permit and, eventually my driver's license. My Crohn's diagnosis came in February of 2001, as a 17 year old junior in high school. Years prior to that, I had all sorts of odd and seemingly disparate symptoms.

Last week, I was diagnosed with Ehlers-Danlos Syndrome, likely the Classical type because I have internal organ fragility issues, included a dilated aortic root (my blood pressure, left unmedicated, reaches life threateningly high levels). EDS is a heritable connective tissue (collagen) disorder, wherein the DNA coded for varios types of collagen is defective. I am hypermobile (often misnamed being "double jointed), and I always have been. In certain parts of my body, my skin is hyperelastic, meaning that I can easily pull it off from my body. I had noticed this years ago, but never thought much about it. When I scar, it is keloid (raised) and I do also get what are called cigarette paper scars, where it looks like I was burned with a cigarette. My spleen is enlarged, as is my prostate (that sometimes makes certain gayish sexual practices more fun, yes . . . I'm always identifying silver linings). I have early onset periodontitis. And, while the boys seem to love my lips, if I don't take exceptional care of my gums, it looks like I was in a bar fight and was punched in the jaw. I have mild scoliosis, and herniated discs in my lumbar spine and up by my neck. Several of my joints subluxate, which means they partially dislocate from their socket. Most recently, my left hip just popped right out. And yes, it is not comfortable, and, yes, I just sort of pushed it back in.

EDS, as I said, is heritable, and now with my diagnosis, members of my family on my mother's side can, hopefully, make more informed decisions about their own health. My mother, maternal grandmother, and my maternal aunt and her three daughters all show symptoms of EDS. Some show different symptoms from mine, and to varying degrees of severity. If it weren't for my extreme hypertension and finding out about my thoracic aortic root issue, I would likely have never known.

So, my interests in health and identity around sexuality were a long time coming. And regarding numismatics, that is the fancy schmancy term for coin collecting. If anyone has something sassy and kitschy about those who seem to collect chronic diseases and conditions, please send them my way.

So, there is a little update about the kaleidoscope that is my health. There are some other things lurking in my kidneys and such, but I'm waiting until that's diagnosed before I jinx myself.

Be well, and be informed about your body.

An example of my skin displaying dermatographic uticaria (L50.3 being a diagnostic code for it). My skin's mastocytes abnormally react to being scratched and start up an inflammatory response. In undergrad, my boyfriend used to write less than polite phrases on my back. Everyone, myself included, got a good laugh at that. My mother is also dermatographic.

This was taken in October 2012, and is an example of extreme gingiva inflammation and early onset periodontitis, which runs rampant in my family. And, now, it is likely that EDS is the cause, because of the malformed collagen in my gums. My gums bled like this just from relatively gentle brushing. I now have to get my teeth cleaned by a periodontist six times a year, use special mouthwash (Rx only), floss more regularly, and use a Water Pik to irrigate my mouth. I am trying to ward off losing all my teeth. My lineage is stacked against me, sadly.

Here is an example, and a very typical one, of hyperelasticity of the skin. People can be hypermobile and hyperelastic without having other criteria for an EDS diagnosis, but it is a tell-tale sign and is used in making the eventual diagnosis. 

Here is an example of hypermobility in my thumb. It is NOT normal to be able to do this, and it damages my tendons or ligaments or whatever each time I do it. It's a fun party trick (in fact, my friend took this at our local gay bar), but EDS patients should not continually do this. This is one of the hypermobile tests that comprise the Beighton Score, a less than perfect series of tests for hypermobility of the joints. More seriously, my hips and shoulders are fairly hypermobile (and I have osteopenia - pre-osteoporosis - in my hip). My grandmother, who likely unknowingly has lived with EDS her whole life, is 84 and has severe shoulder issues. I'll have to carefully monitor my joints and bones to identify early-onset osteoarthritis and osteoporosis.

Why this is needed.

I've lived with Crohn's disease as an official for-real diagnosis since February 2001. I was a junior in high school at the time, and had been slowly withering away since roughly 1997. Typical gay melodrama aside, I did come very close to death before the age of 18, and yes, my life was forever changed once I learned that Crohn's was something that was not only going to be chronic, but that it was going to complicate and mess with my burgeoning sexuality in very interesting ways.

(Spoiler alert: I am now well versed in gay male sex and sexuality, and Crohn's is still a major factor in those aspects of my life and identity.)

Talking openly about disease is difficult. Many people who are woefully well-meaning frankly suck at being supportive and affirming of what it actually means to have an autoimmune disease. Your body is screwed up. It's mean and bitchy to you. In the cases of the two prominent inflammatory bowel diseases (Crohn's disease and ulcerative colitis), your body hates your gastrointestinal tract. In truth, it can hate your joints, your skin, your eyes, and various other things. But in laymen's terms, this means people living with Crohn's and UC have a very unique relationship with their bowels and the things that spew out of them (taco tuesday vis-à-vis Chow Down, anyone?).

For me, and for some other gay men I know with either Crohn's or UC, this means that sex - bottoming, rimming in particular - can often be a very, very painful thing. And, I'm not talking a sexual newbie gaybie who's never taken anything up anywhere. I'm talking about inflamed rectums, hemorrhoids, anal fissures (deep, painful tears), and anal fistulae.

I currently take 17 pills a day, some of which are for Crohn's, and others are for other health issues I collect (a thoracic aortic aneurysm being the main one . . . and yes, that's a time bomb right about my heart). If I had a nickel for every time I was assumed to be HIV +, and then mistreated and maligned as a result . . . I would have a lot of nickels. To be clear, this is not to isolate HIV + gay men, or anyone living as pos or with AIDS. However, the stigma associated with HIV, because it is mostly something "caught" is unbelievably frustrating when my health issues and my myriad pills have NOTHING do do with something I caught. In fact, I have a hyperactive immune system, which is the polar opposite of what the HIV virus does to its host.

Anyway, this is why I'm blogging. More to come . . .

This is the only picture of me from my 4 months at Nemours/duPont Hospital in Wilmington, DE.

This was post-op, and I was about ready to be released. I look pretty damn good considering I had nearly died a few weeks prior to this photo. Also, my eyebrows! Oy vey. April 6, 2001.