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.