A visual approximation of what EDS (probably?) looks like in my body

So I want to give everyone who is reading a chance to see why I think I have Ehlers-Danlos Syndrome (EDS) in a visual, easy-to-see format. After all, one way a doctor diagnoses Ehlers-Danlos is by looking at the patient’s body.

First off, here I am:

Image: Me, Beth, a 26-year-old thin, pale, white woman with blondish-brownish hair (with dark brown roots), purple glasses, dark eyebrows, dark blue eyes, and a black Beatles t-shirt. In the background is my parents' living room (a leather sofa and a Navajo rug are seen).

Image: Me, Beth, a 26-year-old thin, pale, white woman with blondish-brownish hair (with dark brown roots), purple glasses, dark eyebrows, dark blue eyes, and a black Beatles t-shirt. In the background is my parents’ living room (a leather sofa and a Navajo rug are seen).

According to the Ehlers-Danlos National Foundation (EDNF)’s site, the nosology (which is long and complicated; read the whole thing if you want more information) lists several different symptoms that are physical manifestations in the body.

Under the nosology’s “A) General Comments” section:

“1. Skin hyperextensibility should be tested at a neutral site, meaning a site not subjected to mechanical forces or scarring, e.g., the volar surface of the forearm. It is measured by pulling up the skin until resistance is felt. In young children, it is difficult to assess because of the abundance of subcutaneous fat [Beighton, 1993; Steinmann et al., 1993].”

Here are several photos of me showing off my stretchy skin:

Image: Me, Beth, a 26-year-old thin, pale, white woman with blond-brown hair, purple glasses, blue eyes, and a black Beatles shirt. I am  stretching the skin on my right upper arm (on the lower/tricep part).

Image: Me, Beth, a 26-year-old thin, pale, white woman with blond-brown hair, purple glasses, blue eyes, and a black Beatles shirt. I am stretching the skin on my right upper arm (on the lower/tricep part).

Image: Me, Beth, a 26-year-old thin, pale, white woman, stretching the skin out on my lower right arm.

Image: Me, Beth, a 26-year-old thin, pale, white woman, stretching the skin out on my lower right arm.

Image: Me, Beth, a 26-year-old thin, pale, white woman, stretching the skin out on my lower right arm (on the side facing palm down).

Image: Me, Beth, a 26-year-old thin, pale, white woman, stretching the skin out on my lower right arm (on the side facing palm down).

Image: This might be my favorite picture of me in this series. Look; my face is a square! XD Me, Beth, Image: Me, Beth, a 26-year-old thin, pale, white woman, stretching the skin on my face out so that my lower/chin skin makes my whole face look like a square.

Image: This might be my favorite picture of me in this series. Look; my face is a square! XD Me, Beth, Image: Me, Beth, a 26-year-old thin, pale, white woman, stretching the skin on my face out so that my lower/chin skin makes my whole face look like a square.

Image: Have you ever seen a thin person with a double chin? Now you have! Me, Beth, a 26-year-old thin, pale, white woman, stretching the skin on my face out so that my lower/chin skin looks like a double chin.

Image: Have you ever seen a thin person with a double chin? Now you have! Me, Beth, a 26-year-old thin, pale, white woman, stretching the skin on my face out so that my lower/chin skin looks like a double chin.

Image: Me, Beth, stretching the skin on the back of my left hand.

Image: Me, Beth, stretching the skin on the back of my left hand.

“2. Joint hypermobility should be assessed using the Beighton scale [Beighton et al., 1983]. Joint hypermobility depends on age, gender, family, and ethnic background. A score of 5/9 or greater defines hypermobility. The total score is obtained by:

a) passive dorsiflexion of the little fingers beyond 90 degrees; one point for each hand.
b) passive apposition of the thumbs to the flexor aspect of the forearm; one point for each hand.
c) hyperextension of the elbows beyond 10 degrees; one point for each elbow.
d) hyperextension of the knees beyond 10 degrees; one point for each knee.
e) forward flexion of the trunk with knees fully extended so that the palms of the hand rest flat on the floor; one point.”

Here is a visual illustration of the Beighton scale (thanks again to EDNF; this time, the image was found on EDNF’s page about assessing joint hypermobility):

"The Beighton scale ... [Beighton et al., 1983]...  Forward flexion of the trunk with knees fully extended so that the palms of the hand rest flat* on the floor – one point Hyperextension of the elbows beyond 10 degrees* – one point for each elbow Hyperextension of the knees beyond 10 degrees* – one point for each knee Passive apposition of the thumbs to the flexor aspect of the forearm* – one point for each hand Passive dorsiflexion of the little fingers beyond 90 degrees* – one point for each hand  *Note: Picture may indicate a degree of hypermobility not required by the diagnostic criteria."

“The Beighton scale … [Beighton et al., 1983]… Forward flexion of the trunk with knees fully extended so that the palms of the hand rest flat* on the floor – one point Hyperextension of the elbows beyond 10 degrees* – one point for each elbow Hyperextension of the knees beyond 10 degrees* – one point for each knee Passive apposition of the thumbs to the flexor aspect of the forearm* – one point for each hand Passive dorsiflexion of the little fingers beyond 90 degrees* – one point for each hand *Note: Picture may indicate a degree of hypermobility not required by the diagnostic criteria.”

As for 1. or e. above with the illustration of the Beighton scale, I cannot put my palms on the floor (much less rest them there), and I can barely touch them to my toes. It hurts my lower back and legs.

Image: The closest I (Beth) can get to the criteria of putting my palms on the floor with my legs extended straight. I can only touch my toes for a second or two (it hurts my back and legs too much).

Image: The closest I (Beth) can get to the criteria of putting my palms on the floor with my legs extended straight. I can only touch my toes for a second or two (it hurts my back and legs too much).

However, I can pretty much do the rest of the criteria under 2. (the Beighton scale).

My elbows and knees seem to bend back, although I don’t know if they bend back as far as 10 degrees or not; that would have to be measured.

Image: Me, Beth, bending/hyperextending my left elbow backwards.

Image: Me, Beth, bending/hyperextending my left elbow backwards.

Image: Me, Beth, bending/hyperextending my right elbow backwards.

Image: Me, Beth, bending/hyperextending my right elbow backwards.

Image: Me, Beth, bending/hyperextending my right knee backwards.

Image: Me, Beth, bending/hyperextending my right knee backwards.

Image: Me, Beth, bending/hyperextending my left knee backwards.

Image: Me, Beth, bending/hyperextending my left knee backwards.

“Passive apposition of the thumbs to the flexor aspect of the forearm* – one point for each hand”

I can definitely do these (and my cousin, Emma, can, too).

Image: Me, Beth, stretching my left thumb to meet the flexor aspect of my left forearm.

Image: Me, Beth, stretching my left thumb to meet the flexor aspect of my left forearm.

Image: Me, Beth, stretching my right thumb to meet the flexor aspect of my right forearm.

Image: Me, Beth, stretching my right thumb to meet the flexor aspect of my right forearm.

“Passive dorsiflexion of the little fingers beyond 90 degrees* – one point for each hand”

I can’t do it beyond ninety degrees, really, but I can do it to approximately a right angle with both pinky fingers.

Image: Me, Beth, stretching my pinky finger on my left hand back to a ninety-degree angle.

Image: Me, Beth, stretching my pinky finger on my left hand back to a ninety-degree angle.

Image: Me, Beth, stretching my pinky finger of my right hand back at a ninety-degree angle.

Image: Me, Beth, stretching my pinky finger of my right hand back at a ninety-degree angle.

I suppose I’d score something like an 8 out of 9 on the Beighton scale, if I’m not mistaken. I’d definitely get the 5/9 minimum score for hyperflexibility, anyway, I believe.

Unfortunately, I don’t have any pictures (that I know of, anyway; I’ll have to comb through the archives of my computer to really check) of any bruises that I’ve had, even though I do easily bruise, and frequently (which is a symptom, hence my mentioning it). I also have smooth, velvety skin, although I don’t know if there is really a way to capture this in a single photo. I also didn’t take any pictures of the few scars I have because I don’t know if they’re abnormal/EDS-like. And while I definitely have striae (stretch-marks), I’m not having much luck capturing them on my webcam (I miss my digital camera).

I don’t think I have the vascular type of EDS (we’ll find out eventually, I hope), but I do seem to have thin, translucent skin, which is listed under the major criteria of vascular EDS in the nosology. You can see my veins a lot of the time, and the veins are even more obvious when I’m a bit dehydrated and it’s hot outside or if I’ve just taken a shower (then they bulge out a bit sometimes, too, along with becoming a more pronounced blue).

Image: Me, Beth, stretching out my right arm to demonstrate how thin and translucent my skin is and how the veins are visible through my skin.

Image: Me, Beth, stretching out my right arm to demonstrate how thin and translucent my skin is and how the veins are visible through my skin.

 

As for EDS-related news, I haven’t heard anything further from Dr. Francomano’s office (nor was I suspecting to). So I decided to call Dr. Hal Dietz’s office (Dr. Hal Dietz is another connective tissues disorders specialist, but he specializes in Marfan syndrome, Loey-Dietz syndrome, and vascular EDS). It’s the McKusick-Nathans Institute of Genetic Medicine (at Johns Hopkins Hospital), and I think their office also has Dr. Howard Levy, another Ehlers-Danlos specialist.

Anyway, so I called the McKusick-Nathans Institute of Genetic Medicine, and they talked to me and e-mailed me a packet/questionnaire to fill out, which I have done for the most part (I think I just need to add a couple things). Their questionnaire is a lot shorter than the one Dr. Francomano’s office has, haha.

 

As for IBS/SIBO-related news, I had my first colonoscopy and endoscopy ever (at the ripe old age of twenty-six!) on July 24. They weren’t as bad as I thought they’d be, but I kinda want to write a separate entry here about them in detail (I’ll try not to include too much gross detail, though, hahaha).

 

After being more open about all my disorders and conditions, people have been really supportive and it’s been kind of reassuring, especially when it comes to EDS support as EDS is so rare (or at least so underdiagnosed that most people haven’t heard of it).

 

Because of all my disabilities (read my first blog entry if you don’t already know what they are) and because Maryland DORS, the state agency to help people with disabilities gain employment, is being glacially slow in helping me finding a job, my mother hired a friend of hers recently to help me out.

This friend of my mother’s (let’s call her D) has prior experience in human resources, and she’s trying to help me find employment with my disabilities. D encouraged me to apply to the National Telecommunicating Institute for a job. She also scheduled a conference call with my parents, my DORS counselor, and me. The day after I had a telephone interview with NTI, they sent me an automatic e-mail rejecting me. The day after that was supposed to be the conference call; when we had the conference call, D and I talked about what to do now that NRI had rejected me. My DORS counselor never came in on the call, and everyone (D, my parents, and I) was really disappointed.

My parents and D helped me write an e-mail to my DORS counselor explaining my frustration and trying to get a solid timeline on DORS’ services for me out of her. If that e-mail isn’t answered satisfactorily, my parents want to write to our senator (whom we like; he used to live in our neighborhood), Jim Brochin.

 

And switching back to the lighter topic of things my body does thanks to EDS, here are some other fun things I can do that you sometimes see other people with EDS doing on other sites:

Image: Me, Beth, doing "reverse Namaskar"  (folding my arms behind my back and touching my palms together like I'm praying).

Image: Me, Beth, doing “reverse Namaskar” (folding my arms behind my back and touching my palms together like I’m praying).

Image: Me, Beth, displaying my fingers on both hands put them in the swan neck deformity position. The swan neck deformity is, according to Wikipedia, "a deformed position of the finger, in which the joint closest to the fingertip is permanently bent toward the palm while the nearest joint to the palm is bent away from it (DIP hyperflexion with PIP hyperextension).

Image: Me, Beth, displaying my fingers on both hands put them in the swan neck deformity position. The swan neck deformity is, according to Wikipedia, “a deformed position of the finger, in which the joint closest to the fingertip is permanently bent toward the palm while the nearest joint to the palm is bent away from it (DIP hyperflexion with PIP hyperextension).”

My fingers aren’t bent in the swan neck deformity all the time (unlike for some with rheumatoid arthritis who have that as their default finger position), but I can do it.

Image: Me, Beth, displaying the flying bird sign with both of my hands (hand curves so that the tips of the fingers and the wrist go up in separate directions and the top of the palm of the hand points toward the ground).

Image: Me, Beth, displaying the flying bird sign with both of my hands (hand curves so that the tips of the fingers and the wrist go up in separate directions and the top of the palm of the hand points toward the ground).

Image: Me, Beth, touching my tongue to the tip of my nose (which is part of the Gorlin sign, the ability to touch tip of nose with tongue and ability to touch the elbow with tongue).

Image: Me, Beth, touching my tongue to the tip of my nose (which is part of the Gorlin sign, the ability to touch tip of nose with tongue and ability to touch the elbow with tongue).

Image: Me, Beth, touching my tongue almost to my elbow (which is part of the Gorlin sign, the ability to touch tip of nose with tongue and ability to touch the elbow with tongue).

Image: Me, Beth, touching my tongue almost to my elbow (which is part of the Gorlin sign, the ability to touch tip of nose with tongue and ability to touch the elbow with tongue).

I don’t know how reliable the Wikipedia page on the Gorlin sign is, but according to said page, “[a]pproximately ten percent of the general population can perform this act, whereas five times as many people with Ehlers[-]Danlos can.”

Image: Me, Beth, displaying how I can rotate/pivot my right hand all the way around 360 degrees.

Image: Me, Beth, displaying how I can rotate/pivot my right hand all the way around 360 degrees.

And, of course, I can do everyone’s favorite circus trick:

Image: Me, Beth, sitting with my right foot stretched back behind my head.

Image: Me, Beth, sitting with my right foot stretched back behind my head.

I can actually put both feet behind my head at the same time, but honestly, I didn’t feel like it today. I was already tired from showing my friend Christa last night that I could do it (and I also showed her my impromptu, made-up-on-the-spot breakdancing skills, hahaha).

I will post more photographs illustrating how EDS makes my body different or special as the occasions arise and an entry later about my colonoscopy and endoscopy procedure, but for now, I’m going to wrap up this entry and have dinner.

I hope this blog entry gave some of you who aren’t familiar with Ehlers-Danlos Syndrome some insight into the condition and what it looks like.

Intro Post – who am I/what are my illnesses and disabilities?

Disclaimer: So I don’t really know what I’m doing when it comes to blogging, and I’m making it up as I go along, just like with the rest of life. This intro post was the hardest to write, and it took almost a month (I started it on June 20, haha). Hopefully, the others won’t take as long to write.

 

So my name is Beth. I live in the Baltimore, Maryland area. And I wanted to start this blog to educate people about my disabilities, especially since they’re kind of invisible.

 

I was diagnosed with mild Asperger’s syndrome (on the autism spectrum) when I was around two or three years old. I received a lot of therapy through programs like Kennedy Krieger. I was in special education school for preschool, but transitioned to regular public school in kindergarten and managed just fine. I saw a couple family psychiatrists growing up, and was also diagnosed with hyperactivity, anxiety, and depression when I was around five. The hyperactivity diagnosis was changed to attention deficit hyperactive disorder (ADHD) when I was fifteen. (I was also diagnosed with asthma and allergies – seasonal, plant, animal, mold/mildew – when I was very young.)

 

Right after starting to recover from an eating disorder (anorexia, diagnosed as such even though I never lost my period, but my BMI was low, I was thin, and starting to have health problems related to the disorder) I had suffered from on and off for around nine years, I was introduced to cannabis (and left religion a year later; that, the cannabis, and psilocybin have done the most for me in terms of my mental health and disabilities – along with good friends who care about me, even though they know I’m disabled).

I gained more weight after I started smoking cannabis (even though I only smoked once a month for the first four or five years) and went up from 115 pounds (what I had gained after the winter break of sophomore year, when I got better after deciding to recover after being threatened to not be allowed back at Gettysburg because my eating disorder was a liability and I was 108 pounds) to 120. My weight was going gradually up, and would go up and down, but it stayed in a healthy range (for me) of 120-145. I graduated from Gettysburg College in 2010 with a BA in theatre.

Unfortunately, during the year 2012, my weight started dropping from 135 and continued going down past 120 and got lower. I wasn’t trying to lose weight this time. I wasn’t concerned at first, but as it got lower, I was going to the bathroom and having even more problems in the bathroom than I ever had (I had problems with going to the bathroom growing up, both constipation and diarrhea or food that was not quite digested). It concerned me, and it also concerned my parents.

I finally went to my doctor in the summer of 2013, told her about my weight loss and said I had noticed that my gastrointestinal-related symptoms got worse when I ate dairy, and wondered if I was lactose-intolerant. She got me scheduled for a lactose-intolerance test. The day I took it, I noticed my symptoms got worse right after drinking the lactose-infused liquid. (I got very gassy in the waiting room. Heheheh. XD) I was on the right track after all. The results came back; I was not lactose-intolerant, but the test had detected small intestinal bacterial overgrowth (SIBO).

My doctor recommended me to another doctor in her practice, a gastroenterologist who happens to be a family friend and a pretty cool guy. He diagnosed me with irritable bowel syndrome (IBS) and small intestinal bacterial overgrowth (SIBO). I had suffered (most likely just from the IBS until 2012) from bathroom-related problems since as long as I can remember, but it got worse in 2012 and 2013.

I was put on two different rounds of antibiotics (and prescribed probiotics at the same time). They worked a bit; the first time, my weight went up from 112 to 114, the second time, from 114 to 116. However, it wasn’t effective enough, nor would antibiotics really a thing I’d want to take long-term.

Recently, I had an appointment with my gastroenterologist after having finished the second round of the antibiotics, and he said we’d do an endoscopy and colonoscopy, although he expected it to be a low-yielding test, not likely to tell anything except maybe to rule out some things. So those exams are scheduled for July 24.

After that, if nothing turns up, I might have to do the FODMAP diet, which is really limiting, especially since I’m already a vegetarian (for animal rights and environmental reasons, definitely not for health reasons, I love all kinds of foods). A FODMAP diet limits several different kinds of sugars and carbohydrates called FODMAPs (Fermentable carbohydrates; Oligosaccharides: short-chain carbohydrates including fructans and galactans; Disaccharides: pairs of sugar molecules including lactose; Monosaccharides: single-sugar molecules, such as free fructose; and Polyols: sugar alcohols, such as xylitol, sorbitol, and maltitol). Unfortunately, FODMAPs are prevalent throughout many foods.

Without getting too gross as to what IBS and SIBO symptoms are or what they do to my body (besides the weight loss), let’s just say I have every bowel movement possible from the Bristol scale at any given time throughout the day, sometimes several times a day (even several times in a row – go once, flush, wash my hands, go back to my room, run to the bathroom fifteen or twenty minutes later, repeat). If I get into any of the gross details in later blogs, I’ll try to see if I can do some sort of “cut,” in which the gross details are hidden under a cut, so you can only see them if you click on the “cut” link.

 

I was a ballet dancer at Peabody for eight years growing up, from ages five until thirteen. I was very flexible, although not the most flexible one in my classes at all, but nonetheless, I could and still can do weird things with my body that others can’t. Unfortunately, after stopping ballet, I began to have lower back pain a lot. I still do. Around the time I stopped, I told my cousin Emma (eight months older than me and like a sister growing up; our grandparents were our daycare growing up) about these pains. She thought they were a normal part of stopping ballet since “we stretched our ligaments out” (her words). I believed her, so I suffered mostly in silence, only complaining every once in a while. I guess I complained about things enough that my mom thought I was a hypochondriac, so I eventually shut up after a while. However, the pain stayed mostly in my lower back so I didn’t complain much until around 2012, when I started losing weight involuntarily and the rest of my joints and muscles in my body caught up to my lower back in pain levels.

 

In early 2014, I believe, I saw that my old college friend Jai had posted on her Facebook a site about these silver bands that hold thumbs and fingers in place. She mentioned that people with a medical condition called Ehlers-Danlos Syndrome could greatly benefit from those bands. I had heard Jai mention Ehlers-Danlos Syndrome before, but I didn’t know much about it. However, I was fascinated by the site, especially since they worked on holding fingers in place that did the same things my fingers did. I also noticed one of the bands held thumbs in place that had the “hitchhiker’s thumb” problem. My mom has the hitchhiker’s thumb. I decided right then to look up Ehlers-Danlos Syndrome. A lot of the symptoms fit me, especially having joint and muscle pains with dislocations or subluxations and hyperextensible joints.

 

I wasn’t aware of dislocations happening much, but I found out subluxations, or partial dislocations, were something I experienced all the time. When your joints make a popping sound (like Rice Krispies, snap crackle pop), that’s a subluxation. Also, I’d always been hyperflexible with hyperextensible joints like a contortionist. I could always do strange things with my body like a freak show, and I can still put my feet behind my head. Also, I definitely had TMJ problems with my jaw popping all the time.

Other symptoms that fit me to a T were the skin manifestations: soft and stretchy skin (the skin goes back to normal once you let it go), skin that bruises easily, and skin that is thin enough to show the underlying veins.

I did more research, read some scientific papers on it, soaked up all the knowledge I could. As I read on about the genetic components of the syndrome and how it could be passed through the family, I noticed my mother fit some of the syndrome, too (although not to my degree of severity), including having things that were frequently mentioned in the scientific papers: plantar fasciitis, hiatal hernia, and anal fissure.

 

This also explained why the pain got worse after I stopped going to the gym by the summer of 2013. I had stopped going to the gym so I could save calories from what little my body was actually keeping from SIBO. However, when I stopped going to the gym, I lost my muscles, which were probably helping to keep my joints in place somewhat. So it’s not surprising that my joints were hurting more.

 

I showed my parents my research and convinced them to let me make an appointment with my primary physician. My doctor agreed with my research and said that it seemed very likely that I had EDS. She gave me a few names of doctors in the area who were specialists in the syndrome.

 

I also joined a few Facebook support groups (local EDS groups). All the information my doctor gave me and that the people in the Facebook groups gave me was very helpful.

However, I sent the thirty-one-page questionnaire for one doctor (Dr. Clair Francomano) away several weeks ago and called her office several times about it (leaving messages), and I hadn’t heard a thing. I’ve heard her waitlist is very long (over a year), but apparently, if you’re local, you can get on a shorter waiting list for local cancellations. However, when I left phone messages, I asked if they had received my questionnaire in the mail and if I could get on the local cancellations list, but they never bothered to call back.

I finally figured out how to send my questionnaire to the office via e-mail (Adobe Reader on my Mac was being very difficult), and I received an e-mail response from the office secretary on the very same day, apologizing for not responding earlier, and saying she had received my questionnaire in May, but that she was still processing March’s questionnaires. Great.

And my parents aren’t particularly being helpful on whether I should reach other doctors. I’m navigating these strange waters all by myself, it seems, and I don’t like it one bit.

 

 

What have I been doing since graduating from college? I did an internship at the Baltimore School for the Arts, but then dropped it once I went back to school at the local community college, Community College of Baltimore County, in early 2012. In early 2012, I also met a couple of people that ended up becoming some of my closest friends, Mike and Peter.

I took all the prerequisites at CCBC to get into their medical laboratory technology program, but ended up not getting in, and realizing I’d never get into the program because of my learning disabilities (the head of the program wanted me to prove that I could take more classes at a time and get higher grades in them at the same time, which is something that is difficult for me to do). That was at the end of summer 2013. Things got a little crazy with a decline and death of my maternal grandfather after that.

In fall 2013, I started working (on a volunteer basis) on trying to get a Maryland chapter of NORML (National Organization for Reform of Marijuana Laws) going, and also working with a start-up music events and promotion company that some friends of mine have. I’ve been doing those two things since, and also, for the month of June 2014, I got involved in volunteering for the gubernatorial campaign of Heather Mizeur.

 

In 2013, I also started seeing a great therapist, Dr. Messier, and it was even nicer that I didn’t have to see him with my family in tow. We’ve really made improvements on my life together. He has helped me navigate friends (and romantic interests, hook-ups, etc.), jobs, volunteering, etc. He has really given me a reason to stay in the game and to get stronger mentally. I would recommend him to anyone.

 

Also, in fall 2013, I applied with Maryland’s Department of Rehabilitation Services (DORS), which helps people with disabilities get jobs. I was not aware of any possibility of having EDS at the time, but I applied with my depression, anxiety, ADHD, Asperger’s, and SIBO, and was assigned to “first tier,” meaning “most severely disabled” (had more than two or three conditions). Things with DORS (and with the organizations they work with to help attain jobs) have been moving at a glacial speed, to put it kindly. I’ve had some meeting with the people at DORS, and my primary advisor there, Ann, is smart, wonderful, and she cares. The problem is, DORS is overworked. And also, I feel like frankly no one knows how to help me specifically.

 

I took a career aptitudes test through DORS (both on an academics level to see how smart and capable I am and also on an interest level to see what I’d be interested in and good at), and was not told anything that surprised me. I’m mostly interested in jobs that are artistic (like acting, writing, etc.) a.k.a. jobs that don’t exist or make money. And I don’t have enough entry-level experience for most jobs anyway, except ones that wouldn’t work for me physically. Like I’d love to get some entry-level experience to put on a resume, but if I can’t stand up for more than half an hour at a time (maybe an hour on a good day?), then it makes it really hard to get an entry-level job doing most things, like waitressing, retail, food service, etc.

 

When my cousin Emma visited home to be the maid of honor in her friend’s wedding a couple of weeks ago, I asked her if she knew anything about EDS. She is now almost twenty-seven, a working professional in Seattle. She’s getting a PhD in psychology, and lives with her boyfriend (whom she’s been dating since she was an undergrad in Ohio) and their cat. She’s incredibly smart (she puts me to shame easily). She was also the one who suggested way back then that my pain was related to stopping ballet. When I brought up EDS to her, she mentioned that she had heard of it (although I am not sure if this was her hearing of it independently or if her mother had brought it up to her once I told the family), and she said it might explain all her joint pain. Hearing that from my cousin made me feel even more confident that I was on the right track, and it also made me feel less alone.

 

Everyone that I knew growing up, everyone from high school and college, they’re all getting their master’s degrees, doctorates, and other advanced degrees, or getting engaged or married, or having babies or getting amazing jobs or traveling or whatever. Now, I have no interest in having babies, and I’m certainly not at the point in my life where I’d want to be married. I also think a combination of autism and religion stunted my maturity growing up, so even though I’m much more mature now, I’m still not at the point where I’d want to be some sort of “real grown-up.” And frankly, I’ll never want to be 100% that; I like marching to the beat of my own drum. But I would at least like to have some sort of job or something to do during the day, and I’d love to move out of my parents’ house any day now.

 

I’m floundering in pain. I’m tired. I want to work. I want to show the world I am here, I am alive, I am more than capable. But I’m stuck inside my parents’ house (where I live, at twenty-six, unemployed and out of college for four years now). My close friends that I’ve made in the past couple of years are really my only inspiration to keep going at times. That, and the weed, not gonna lie (I do miss not smoking as often and the fun that comes with having a low tolerance, but I need medication since no one’s trying to help me actually get better). My friends and the cannabis get me out of the house. They keep me from sleeping all day and frittering my life away, which is honestly all I feel like I’m doing sometimes.

So I’m Chronic Illin’ – being chronically ill, being cool as hell all the time, and also using the chronic (MJ, both medical and recreational) to smoke away the illin’. Oh, and chronicling my life with illness. I like puns a lot.

I guess that’s it for an intro post. Any future posts will draw on what I’ve mentioned here.