This is me and Mr. Lestrange (if I’m Capricious, let’s call him Steadfast Lestrange), showing off our rainbow colors at Cincinnati Pride yesterday. Yes, that’s me, without a mask, outdoors in June! How did I get away with that? Why, with careful planning, some success and a little failure, of course.
Sexuality and Gender as a Spectrum
First, I don’t know that I’ve mentioned before that I’m pansexual or if I have it’s been as a footnote so I’d like to take a moment to talk about it. In case you aren’t familiar with it, pansexuals are attracted to spirit over body. Pansexuals can be attracted to cisgender people, trans people and everything in between, which is what sets us apart from bisexuals. It doesn’t make us better, just different. When I first came out, I don’t even think the term existed, but I adopted it as soon as it did. It was like finally finding skin that fit just right.
I’m by no means ashamed or anything. It’s quite the opposite, as I’m always more than happy to let my freak flag fly (and yes, unlike Nola Darling, freak is a term with which I’m happy to label myself, but you aren’t allowed to direct it toward me if you’re going to hurl it like an insult, much like the word dyke). I came out of the closet so long ago that I sometimes forget just how important queer activism still is. I’ve also felt ostracized by the queer (primarily lesbian) community for falling in love with a cisgender pansexual man and participating in what appears to be a heteronormative relationship to the casual outside observer. Naturally, I found myself distanced from the community for that reason. There’s a long, tired history of people at either end of Kinsey’s scale for sexual attraction/orientation judging those of us whose attractions fall somewhere in the middle and largely unless we’re with same sex and/or gender queer/trans people, historically we’ve gotten shunned by the L and G in the alphabet soup of sexuality. While trans people have also had a terribly difficult time of gaining acceptance on both sides, I feel like they’ve made more headway in recent years and somehow it’s those of us who straddle the entire spectrum that will be fighting on the last frontiers of acceptance, but I’ll spare you on the college lecture of why that is. I have a degree in Women, gender and sexuality studies. I could go on forever.
When you have the zebra trifecta and have largely been ostracized by the community for which you’d be doing activism, you don’t really feel inclined to use up your precious spoons to go and march for a place at the table in it. Therefore, it’s been 14 years since I’ve been to a pride event. I’m happy to report that 14 years has brought about some change and much more inclusion for everyone on the spectrum and I have to think millenials have everything to do with that, so bless you millenials and bless you to the Xers who mostly raised them. We felt included and have the merch to prove it, lol.
Preparing to go to Pride
When we began talking about going to Pride, I started watching the weather and the pollen reports. I didn’t want to go if I had to wear a mask and it was too hot outside. We caught a big break, where it rained in the morning, bringing pollen counts way down and providing much cooler temps (high of 77f). We immediately ruled out marching in the parade, as despite the fact that I’m now doing 90 minute workouts and have much more energy, POTS can still make staying on my feet for long periods a little tricky. Standing around and waiting is the worst and you’d be surprised how much you end up doing that at a “march.”
So with that in mind, we opted to go later in the day to enjoy the festival activities. I wore loose, comfortable clothing that covered most of me and my compression socks. Attire is very important when you’re a Masto-Zebra-POTSie. I need to keep most of my skin covered because I am intolerant to UV light. I need to try to stay cool because I have heat intolerance and loose clothing helps a bit, and I need to keep my blood volume up, so the compression socks help. I also wore well-fitting, supportive athletic shoes, which of course are always a must for every zebra. Like most, I have very flexible feet, both of my arches are collapsing, I have morton’s toes, weak ankles that sometimes collapse and there are dozens of tiny bones in your feet that are all too happy to sublux at any given moment.
I made sure my pill case was filled not only with my regular daily meds, but also rescue meds, CBD oil and advil, all of which I ended up relying on heavily. I also took my mask, sunglasses, oral rehydration salts I could add to water if I needed, eye drops and nasal spray. Boy was I glad to have them all.
When I woke up that morning, I was already reacting to something. I ran out of herb, which I usually vape, so my husband picked me up some hemp derived CBD oil on the fly to try to help get me through. Since I started taking it the night before, we suspect it had something in it that was making me react. Maybe I can’t tolerate hemp oil, who knows. I woke up with dermatagraphia and some flushing. I also found the CBD oil, while effective for pain relief, did little to nothing to help me sleep, so I got a whopping 4.5 hours of sleep the night before, too. The morning was bad for the tummy, too. Right after breakfast, I had to run for the bathroom and then again every 15 minutes or so. It was as if I’d drunk prep for a colonoscopy. This created a bit of anxiety about the odds of me lasting very long.
I took more CBD oil in the morning (I didn’t realize it was probably the oil until later in the day) so by the time we got downtown, I was a pretty good ball of itch and had to get around 75 mg of benedryl in me before I really got things calmed down.
Attending the Festival
As I’ve mentioned before, we live in the northern most part of Kentucky which borders the Ohio River with Cincinnati just on the other side. As the crow flies, downtown is 11 miles from our house, but they seem like two different worlds. We knew parking would be a nightmare right around the event with both Pride and a Reds game and every other regular Saturday activity competing and pricing was as high as $60 to park. We opted to do what smart Kentuckians do and parked on the Kentucky side in Newport for $5, then took the Purple People Bridge across to Cincinnati, which is a half mile walk.
And how about these?
Got them at the festival!
My first problematic encounter came in the parking garage at the Levee. There was a woman at the elevators who had absolutely bathed in her perfume and I literally ran away from her so I could strap my mask on my face before I went back. Crossing over the bridge was more of the same and I was quickly reminded how much queer boys love their cologne. We had to stop at the beginning of our bridge trek because of tachycardia, but once I got my heart back to normal, it behaved pretty well the remainder of the way.
By the time my Benadryl fully kicked in, I was actually doing pretty well. The pride festival is held in a large riverside park called Sawyer Point Park and Yeatman’s Cove. It probably spans around 2 miles in length. We walked it twice, browsing booths, eating and shopping. So long as I stuck to a reasonable pace, my heart stayed within regular limits. I only needed to sit down 3 or 4 times in the 5 hours (holy shit! 5 hours!!!) we were there.
I ate things I’m not supposed to eat. We split a pretzel, which of course has yeast, but at least I skipped the cheese and/or mustard to go with it. We had gyros with both tomato and tzatziki and we bought a funnel cake, but we were both so worried about what we were doing to ourselves that we just picked at it a little and threw it away.
Around 3.5 hours in, my Morton’s toe on my left foot started screaming. I don’t know if something subluxed or it was just cramping or what, but I developed a pretty good limp and was grateful to finally find a curb where I could stretch it out.
By the time we decided to leave, we were both pretty exhausted, but I was determined to walk the bridge back instead of ordering an Uber. Again, I was hit with tachycardia at the beginning of the bridge, this time because of the incline, and we chose to sit at some conveniently located benches. We made it the rest of the way without too many problems.
The Gift that Keeps on Giving
As is true of most zebras, what we get away with first will usually come back to haunt us later. I wasn’t at all surprised how my body turned on me last night, despite keeping up all the meds. I was sitting there watching TV and got hit with a sudden wave of nausea. I went running for the bathroom and realized I could barely walk, so severe had the pain in my foot grown. My neck turned beet red when my husband showed no signs whatsoever of having been out all day. Mental note, next time wear a sun hat, even if it looks stupid.
Apparently, I spent so much time scratching in my sleep that my nails were worn down and reshaped when I woke up this morning! Some other lovely morning side effects included eyes that were a little itchy and hands and feet that look like sausages along with some bone pain, joint pain, dizziness, and a little dermatographia. All told, I’m really in pretty decent shape. I mean, really I would have loved to wake up in this good of shape anytime over the previous ten years.
Breaking It All Down
This level of success can only mean the quercetin complex and other meds I’m taking are doing a bang up job of healing my body and I’m finally learning how to proactively plan and control my MCAS (a post is in the works on these supplements). Compare it to last year’s attempt to enjoy a festival in this blog post, When Oompa Loompa Sat on a Hill (it’s amazing to consider how naive I was at the time. I didn’t even realize most of those symptoms had anything to do with MCAS). Had I attempted any such thing even two months ago, I’d have lasted a third of the time and I’d still be lying in bed right now with terrible head pain and running to the bathroom every 30 minutes debating which end to present to the toilet first. My pain levels would be completely out of control, I probably would have woken with something out of joint, my eyes glued shut and would have had to deal with an anaphylactic reaction at some point during the night. This, frankly is a real treat.
Would I want to treat my body like this every day? Absolutely not, but it’s nice to know that I don’t have to be a prisoner in my own home 365 days a year and can get away with the occasional special day out without restriction. I know within a few days, I’ll be fully recovered from this rather than weeks. That means it won’t cost me a week or two of strengthening and exercise, setting me back months. Hopefully it won’t be paying too long term of a price with my tummy. I regret nothing at this point.
We all have to find our balance and decide for ourselves what’s acceptable and what we’re willing to risk for some temporary freedom; a day to do what we really want. What price is too high to pay for a little freedom? At this level, the trade off is quite worth it to me, while for some it may not be. Inside or outside of the community, it’s not our place to judge what’s right for each other, just like in the LGBTQIPG community. It’s our job to support each other and be good to one another, at least if you want to have friends and have those things yourself. As humans, we are critical by nature, we make comparisons automatically, a trait which helps to keep us safe. Acting on those critiques, speaking rudely against other’s decisions, those are things we can resist. Opting instead to be sympathetic and supportive when we screw up and bite off more than we can chew and cheering us on when we succeed; those are choices we can all easily make.
I’m thrilled to announce I will be adding video to the Zebra Pit, starting with this introductory video. While my blog of course has an about section, my videos will be posted on YouTube and sometimes also on Instagram, so I wanted to take the time to do an introduction video. It doesn’t cover much about who I am. More so it covers what we do here at the Zebra Pit and a basic overview of my main diagnoses.
I won’t be switching to vlogging exclusively, but will be using a combination of writing and video, depending on the subject and how I feel I can best present the information I want to convey. I’ve wanted to do this since I began my blog, but with heavy brain fog causing significant delays in my thought processes and ability to recall words combined with having to manage my spoons so carefully, it just didn’t seem feasible until now.
Ideally, many of my posts will be a combination of video and text. I hope this will make the content more interesting and easier to understand with certain concepts.
As usual, I welcome any input you may have about this video and the addition of video overall. Let me know what you think!
I just wanted to do a general update on how things are going now that I’ve been working for a month. It’s crazy how much things have changed already, but that’s life in spoonieland. If nothing else, things are always changing, be it good or bad. Luckily for me, things have been climbing like I’m a hot air balloon attendant rather than an Uber driver and I think I probably have PQQ to thank for that. Without my protocol, I’d still be laying in my bed moaning to myself and contemplating how to exit this world as painlessly as possible still. Thank goodness those days are behind me and I’m going to work hard to keep them there, though I’m pragmatic and understand that with an Ehlers-Danlos body, I only get so many choices. Still, there are many choices to make and I’m dedicated to controlling as much of this disease as it will allow.
In the energy department, I couldn’t be happier. It seems I only continue to gather more weekly. Sometime last week I realized that I was spending a lot of my time fearing something that just wasn’t happening anymore and it was time to unclench and enjoy my life a little more. Post-exertional malaise has taken a vacation and I can comfortably get to work without that bastard staring over my shoulder. I actually wake up every morning feeling fully recharged and ready to take on my day, pain be damned.
Even my pain levels are fairly low. Yes, I’m still fighting with headaches, but they’re minor compared to the severe migraines I was fighting with for years that included unbearable bouts of nausea, vomiting, auras, light and sound sensitivity that had me locked away from the world for weeks at a time. I’m also still dealing with near daily subluxations and the sore tendons, ligaments and muscles they leave behind, but that’s nothing in comparison to the years of agonizing muscle spasms and myofascial adhesions that left my entire body wracked with searing pain for years. Some days, I don’t even have to take any pain meds at all. Others, it’s as simple as taking a few tylenol and a muscle relaxer or applying a topical here and there. Life is pretty sweet, really.
I’m just a bit overwhelmed trying to deal with all the change. I feel wonderful, but I’m having a bit of a hard time keeping up. I don’t trust this new world order. I’m constantly looking over my shoulder, waiting for that infamous other shoe. I’m afraid to increase my work hours and use my SGA only to fall ill. I fear increasing my exercise and costing myself a day or work, even though what I do is mostly sedentary, because like it or not, the mental exertion costs my body almost as much as physical exertion.
And then there’s what I want to do versus what is best for me to do. Like I love the great outdoors, specifically the mountains and the woods and hiking trails, but the worst thing I can do for both my joints and my osteoarthritis are jarring activities. I should stick to my recumbent bike and walking at the mall, but I want to be hitting the trails at Red River Gorge and drinking in all the gorgeous fall color. Luckily, I found a bit of a compromise in a few trails that are mostly flat and somewhat paved combined with some drive up lookouts, so my husband and I drove down on Sunday to check them out.
What amazing beauty. It was the first time in 10 years we were able to visit and we did very well on the trails we chose, always turning back when the trails began to dip too much for my safety. I came home with only one minor subluxation and a hip jamb that didn’t even hurt the next day, a little knee pain and only the slightest post-exertional payback the next day. I am elated that our hiking attempt was a success and I now know that I can do a couple of miles so long as I refer to guides and follow the rules I’ve created for myself closely. This disease is all about compromise and when you really love doing something, you have to find a way to make it work.
Hopefully I will soon find time to turn one of these treasured shots into a painting. This is honestly one of my frustrations, however. Having time to do the newfound things that I love. I began painting when I was housebound and needed an outlet for creative expression that didn’t require the use of the speech centers in my brain. They require an immense amount of time that I no longer have, though. I can’t even seem to keep up with the housework and I’m only working 3 days a week. While I no longer require full days of rest in bed, I still need my daily rest breaks of kicking back and staring at a little mindless television while giving my body a rest in my recliner. Also, because my joints are so unstable, I don’t dare rush through physical tasks of any kind. Everything takes so much more time than it did before I became ill. I feel like a turtle in a rat race. I can’t even keep up with my beloved blog, though I try!
One day at a time, one step at a time. I’m so amazed by all that I’ve recovered, I won’t be surprised if the complaints I’ve listed here today are things I will be celebrating a victory over somewhere down the line. But even if I don’t, I can’t complain. I’ve come so far from where I was and I’m proud of myself for taking the many steps required to get here. I’m finally in a place where thinking about the future isn’t such a scary thing. In fact, I view it with relish and find myself making many plans for my future alongside my husband. It’s a much different worldview than I’ve possessed in many years and it has me shouting from the mountaintops to be counted in this life.
Now that I finally have a diagnosis of Ehlers-Danlos Syndrome (EDS) and have a complete picture of my health, what I believe went wrong to make me so sick and the ways I’ve worked to combat many of those problems, I felt it might be constructive for myself and others if I took the time to examine my personal history. EDS is not something that “just happens suddenly” for most of us. There are many signs and clues along the way and if you take heed and learn early how to care for an Ehlers-Danlos body, the odds of living a longer, more healthful life with full mobility are much more likely. It is said that EDS is not a degenerative disorder, however it is a disorder that can bring about loss of function due to mechanical failure, and those failures can never be fully overcome. That’s why early diagnosis and active protection in the form of prevention are vital for zebras.
Unfortunately, I didn’t have the benefit of knowing early. Though I felt from a very early age that there was something wrong, my family had a long standard of denying our pain, not going to doctors unless something seemed serious and life-threatening and encouraging each other to just suck it up, because “that’s life; just deal with it.”
When I spent my childhood catching every flu and virus rampant in our public school system and developed bronchitis and sinusitis four to six times a year, no one questioned it. When I constantly sprained my ankles and complained of leg pain, I was told to suck it up. Any link between frequent bouts of tendonitis and our strange hypermobility was never questioned. When my gymnastics coach got a load of my flexibility, she was thrilled to have me join the team, only to tell my stepmother at the end of the year that my poor proprioception and motor skills made me terrible gymnast material and I wouldn’t be invited back. When I complained that standing in one spot or working on my feet for longer than an hour brought me severe pain, I was being a drama queen, but these were all early signs that I had the same incurable genetic disorder that many of my family members had, only it wouldn’t come to affect them in any noticeable way until they were much older, or at least if it had, they didn’t feel it was enough to bother with or were told the same things I had been told; that what they were feeling was nothing unusual and nobody cared.
These were just a few of the signs of EDS in my early life. Other things are more obscure, but just as important. For instance, I was always dropping things, running into doorways and tables and tripping on perfectly flat ground. I was a real klutz. This is due to joint laxity and poor proprioception. When your joints are loose, your brain can’t properly place or guide your body.
I also suffered from a wide variety of allergies from an early age and they have only continued to grow throughout my adulthood. I started out with allergies to certain soaps and cleaning products and my allergies grew to include most common outdoor allergies, all synthetic dyes and perfumes, some nuts and fruits. Now I have a wide range of allergies and intolerances that range in severity from anaphalactic reactions to headaches and nausea and I strongly suspect I have the common comorbid condition of a mast cell activation disorder and am seeking the help of a specialist in that area. This is likely what caused all of my respiratory infections, combining inflammation and congestion with a weakened immune system.
I also suffered from a lot of gastric problems. I often overate because my stomach felt unsatisfied after eating. I don’t know if it’s because of the bendy nature of our soft tissue, a lack of proper signaling in my nervous system or because of acid reflux issues, but my stomach often insisted I was starving and I had a great deal of difficulty denying it. My hormones also fluctuate quite wildly, which is also common in EDS and could have been a contributing factor. Whatever the cause, weight gain and obesity are fairly common in EDS and is a family-wide issue for mine.
My first taste of serious joint injury came after my first year as a certified nurse’s aide at nineteen. According to the doctor who treated me, I damaged every muscle in my lower back and it was over two weeks before I could stand without excruciating pain. I have a feeling I herniated both my L4-L5 and L5-S1 that day, but it would take me another decade to convince a doctor to do an MRI or CT to check, despite putting my back out at least yearly thereafter.
In my teens and twenties, I often missed work or school because I was plagued by chronic infections and periods that were extremely heavy and brought intense cramping that I simply couldn’t bear on top of 8 hours of excruciating foot and leg pain that would leave me nauseous, shaking and sweating. In desperation or emotional outbursts fueled by pain, I’d quit jobs, sometimes walking out without notice, convinced I just couldn’t survive another day. My mother told me I was incapable of controlling my emotions and too stupid to recognize the value of a paycheck. I felt worthless and stupid and became stuck in a cycle of failure because manual labor or customer service jobs that would only bring more pain and end in yet more failure were all I could get hired to do.
I began experiencing odd dental problems. Because the women on my mother’s side of the family had this uncanny history of losing their teeth after giving birth to their first child, I was downright fanatical about my dental care. Still, I was amassing cavities at an insane rate and had developed gum disease at a very early age. My teeth would even crack and splinter. I broke a tooth on a piece of candy and had a tooth disintegrate around a filling. Worse, my pallet was so narrow that when my wisdom teeth started to come in, they threatened to oust my molars, because they wanted to grow in right on top of them. At the dentist, it would take three times as much Novocain to numb me and I would have to wait twice as long for it to take effect. Then it would take all day for it to wear off. My teeth have been so sensitive for decades now that despite using the best sensitive toothpastes and soft electric brushes on the market, simply breathing through my mouth is painful. Eating is at times utterly intolerable and sometimes they ache for seemingly no reason at all. I think all the time about removing those I have left and just being done with it, though I have only lost 3 to date.
By the time I made it through my first degree—an attempt to escape manual labor and a hope to do something more personally and socially meaningful—my fatigue and pain were to the level that even working a desk job was a great challenge. The physical portions of my administrative job was becoming more and more difficult for me to perform and I worried constantly that people thought me lazy or uninterested in doing my best, though that’s always been contrary to my very nature. In college, I tore my Achilles tendon making the usual hike up two stories of stairs in a building that was constructed long before there were elevators or laws about them and the pain of that injury never subsided completely, nor any other, just as it had been with every torn tendon or ligament. In the course of trying to stay healthy and active, I suffered tendonitis in so many parts of my body, I’m no longer sure I have any tendons I haven’t injured.
In college, I began to push a bit about whether there might be something more wrong with me. I remember having a couple of doctors run panels on me for connective tissues disorders, but none of the usual suspects appeared. Still, I had felt something was wrong for years and I was beginning to suspect I was right. In 2001, at the age of 29, I developed focal segmental glomerulosclerosis, a rare kidney disease that was even more rare for my particular demographic. It moved rapidly, killing 10% of my kidney function in less than 6 months. I was certain it was going to end in kidney failure, but miraculously, it reversed in less than a year and I made a complete recovery. I now believe that it was caused by the pesticide laden well water I was drinking in our farmhouse and am not surprised at all that this time brought about my first fight with fatigue, achy joints and irritable bowel syndrome, as well.
Still, it wasn’t until almost my mid-thirties that I began to insist to my doctors that there was something seriously wrong. I’d begun working out regularly and eating healthy. I lost sixty pounds and lived a healthier lifestyle than ever, but still the pain and fatigue could not be subdued and my back was becoming a near daily problem, shooting pain from my lower spine and spilling down my right leg. I related my ever growing fatigue with the pain I lived with daily that was sometimes completely crippling and at others a dull ache. A CT revealed that my two lowest discs were herniated, along with one in the thoracic region and two in my cervical spine. Eventually the pain turned from occasional to relentless and severe, forcing me to leave my job, a third of the duties beyond my ability to handle. When I finally gave in and accepted a surgical option to repair the discs, I thought I’d be home-free from that terrible tiredness, able to work and function normally again.
The first surgeon I saw wanted to do a spinal fusion, but I wasn’t comfortable with having hardware put in, especially since I already had so much deterioration in my back, so I went to another surgeon. The second surgeon agreed. He felt a discectomy/lamenectomy would be appropriate. In September of 2009, I came out of back surgery with raging nausea and a right leg that buzzed like an angry beehive of numbness, but the unending severe pain I’d become accustomed to had vanished and has remained a rare visitor ever since. Only on special occasions does my back pain return, but that angry beehive fell to a dull buzz and with fascia therapy, I’ve managed to work the numbness down to a couple of spots on my right foot. Hopefully with time, I won’t have any left.
A few weeks out of surgery and I was bound for physical therapy. The only problem; I was still in pain in many other parts of my body and the fatigue I had associated with living in that level of constant pain never subsided. If I look back at my history it makes perfect sense, but at the time, I was flabbergasted. I couldn’t walk a mile without being wiped out for the remainder of the day and so complained to my General Practitioner (GP) at the time, a newbie in the residency program at the local hospital.
“So, I’m through the surgery and my back feels worlds better, but I don’t feel better. I’ve got no energy to do anything and no matter how hard I try to build up stamina, I only seem to have less energy instead of more. I ache all the time, all over my body, my joints all hurt something awful and I can’t seem to get back to where I was before the surgery.” This was all the description she needed to perform the tender point test for Fibromyalgia. She would press in a spot and get a rise out of me. “Ow!”
After six or so of these ow’s, she stopped, explaining to me that she was only applying the minutest of pressures to these tender points. Did it really hurt so bad, she inquired? It did. After apologizing, she went on to test the remaining tender points, excitement becoming a mixture with the keen intelligence that showed on her face. By the time she finished, she had confirmed pain in 14 of the 18 spots she knew to test.
It felt like déjà vu, this test. Barely a decade earlier I’d seen it given to my ex partner. Even then I wondered if I too should be tested, but fear of stigma forced my silence.
“Do you know what this means?”
“I have a feeling you’re going to tell me I have Fibromyalgia.”
“That’s right; undeniably so. This is the cause of your pain, your fatigue, your sleeplessness. I’m going to write you a prescription for a drug that usually helps quite a lot with the sleeplessness, which should also decrease your pain and of course the fatigue. It was once used as an anti-depressant, but it’s been found to be much more helpful for FM.” She handed me the prescription that read; Amitriptyline, 50mg. “Take one of these every night before bed and let me know how it does.” She wrote me an additional script for pain medication, making me sign a contract that stated I wouldn’t accept pain medication from any other doctor.
I’ve never been so thrilled and petrified at the same time. Finally, a doctor who validated what I’d been feeling for years, an actual diagnosis, which meant something could be done about it. Boy was I naïve. The wonderful resident who diagnosed me graduated and moved on to a shared practice, one that didn’t accept my insurance. Her former Resident Supervisor was not of the same opinion as to the nature or truth of an FM diagnosis and when I went in to ask for additional treatment, I faced my first instance of prejudice about my illness. I wasn’t sick, she told me, I just needed to exercise and lose weight. For two years this woman tormented me every time I came in, regardless of what resident I was assigned to, with lectures about my diet and my physical fitness. Of course through all this she could have at least attempted to be helpful in that regard and given me some meaningful information or written a script for physical therapy, or anything of the kind. Instead, she’d deny me any and all treatments and refused to give me any more pain reliever, intimating that I was a drug addict seeking a fix.
You might think that I should have stormed out of that office never to return right off the bat and maybe I should have. But to think so is to deny a serious issue with the American medical system and to ignore the history of the medical community’s denial of Fibromyalgia as an actual disease instead of a catch all for “we don’t know what’s wrong with you”. This is something I knew all along and it bred in me a certain level of doubt, despite what I was experiencing with my own senses. So I put up with it, swearing I’d find another doctor soon, but dreading that a new doctor would think the same way. It wasn’t until what little relief I’d been getting from the Amitriptyline began to fail me that I was finally forced to make a move.
When I finally did, I was sent to a rheumatologist who gave me an additional diagnosis of Chronic Fatigue Syndrome (ME/CFS), but I wasn’t satisfied with this diagnosis, as it’s a sudden onset disease and I knew whatever it was that I had I’d probably had my whole life and that what was going had been compounding over the span of my life. Still, I learned everything I could about the disease in an attempt to take the best care of myself possible. The rheumatologist tried many drugs with me, but all of them failed because they were either too much for me to bear or simply had too many side effects.
During this time, I also started experiencing dizzy spells when I was standing or would try to reach up in a cupboard for something on a high shelf. I passed out in the middle of the post office, simply crumpling to the ground like I was one of those inflatable flailing arm tube men outside a Jiffy Lube and someone cut the air off. It took five years to get diagnosed with POTS.
I also began to experience severely dry skin that only got worse with exfoliation and had to change from my usual bath products to special oil based shower gels to avoid growing great dry patches that I suspect are psoriasis, but have never been biopsied. I also have to condition my skin with coconut oil and curel daily to avoid outbreaks. As my mother suffered from psoriasis, too she taught me the dos and don’ts and so far, I’ve managed to get along.
My late thirties also brought with them scary and excruciating bowel infections such as diverticulitis and c-diff (clostridium difficile), all too frequent staph fueled boils, UTI’s and kidney infections; All this plus the amazing ability to contract any flu, virus or infection of every person who ever stood within a 10 foot radius of me or my husband who seems ever the viral incubator though he’s rarely ever sick. I was constantly on antibiotics and I began experiencing frequent subluxations and dislocations, even in my ribs. My migraines went from occasional to almost daily to where they never stopped, leaving me so sensitive to light and sound that I couldn’t leave my bedroom and would spend days vomiting. Between that and my untreated POTS, life was completely unbearable and I was bedridden for all but a few hours a day most of the time.
In 2015, constant abdominal pain, irregular periods and continued severe cramping finally drove me to seek a hysterectomy. At times, I would bleed for a month. It turned out I had endometriosis, but because I wanted to have children, no gynecologist ever felt it necessary to tell me this. I still scratch my head over this. Patients need all the information to make a decision and no decision was ever presented to me, only the question of whether or not I wanted kids. I was always honest that yes I wanted children, but it didn’t seem possible, as I had tried and been unable to conceive. Why, in all the OB/GYNs I saw over tge years did none tell me point blank that I likely had endo? I have no faith left in the medical industry. Along with endometrial tissue, there was a ton of scar tissue. From what, they couldn’t say.
Then sometime in 2016, I came across some memes during one of my brief excursions on Facebook talking about a connective tissue disease that I’d never heard of called EDS. I decided to give it a look, since I’d been through testing for literally every disease my rheumatologists, neurologists and GP’s could think to test me for. After reading extensively about EDS, I felt like I’d finally found the disease which explained not just some of what had been going on with my body for some of my life, like ME/CFS had, but what had been happening my whole life. It also explained a great deal about my family, all the way back to my great grandmother.
The only problem was, there didn’t appear to be anyone who knew how to diagnose the disease. It’s said that EDS is a rare disorder. Many of us disagree. The problem is not so much that it’s rare, but rather that it’s rarely diagnosed because it’s rarely taught in American medical schools. I’d been trying to get a diagnosis for at least 17 years, been seeing doctors for EDS related problems my whole life, and didn’t get a diagnosis until I figured it out for myself and sought out a qualified doctor who knew how to diagnose it when I was 45.
Had I known sooner, I might have joints that aren’t so severely damaged by years of abuse. Had I known sooner, I might not have such severe POTS. Had I known sooner, I might still have a fully functioning digestive system. Had I known sooner, I might still be working. Had I known sooner that endometriosis was a common comorbid condition, I might not have fought having a hysterectomy as long as I did. So many “had I known’s.”
Now that I have the proper diagnosis, my hope is that new symptoms won’t take so much time to address and treat because it’s fairly well known what comorbid conditions are common to EDS. It’s also much easier for me to get connected to the right specialists who know about my condition, now that I have the support of my local EDS group. No, EDS is no curable and there’s really very little that can be done to reverse any of the damage already done, but I can work to preserve what I have, try to prevent further damage and work with specialists to try to treat what I have as well as possible. It’s not great, but it’s certainly better than going to doctors who want to blame the consequences of my disease as the cause of my problems.
I no longer feel so alone. Though I felt certain this is the disease I had once I was finished researching it and began to enact positive changes that made a big difference in my life right away, I still felt alone and a bit helpless about the things I couldn’t change until I got that official seal of approval. I could change my diet, I could do my own fascia therapy, I could learn about safe exercise for EDS and implement it in my life. I could even research and start taking a wide variety of supplements to help myself feel better and I did. But I can’t do anything about the suspected chiari or CCI all by myself. I can’t do anything more to help my suspected gastroparesis than I already have. I can’t treat my mast cell any better than I already do. As a layperson with only so much knowledge and no medical equipment, I will always need a doctor to partner with me in my care. And let’s face it; it’s hard enough to get them to believe you’re sick in the first place. Having a primary diagnosis can be the difference between them believing you have all these strange comorbid conditions and not; a huge obstacle to getting the testing you need to find out and start getting treated for them. That’s why I’m a huge proponent of getting diagnosed, no matter how hard you have to fight and no matter how long.
There are obvious signs of EDS in most of my family members and we are probably all affected to some degree. My mother developed a lot of the same problems I had, only she was 20-30 years older than I was. My sister has a lot of symptoms, but they haven’t been disabling, thus far. My brother likely has MCAD. My grandmother and great grandmother both had a wide variety of problems that fit EDS, my grandmother spending the last 25 years of her life in a wheelchair because of spine and hip deterioration. For the most part, no one has been incapable of working throughout their adult lives except for me and it really messed with my head for a while.
So what’s different about me? First, it’s important to note that how EDD affects anyone can be drastically different from how it affects another, even in the same family. Also, environmental factors, how you take care of yourself and emotional stress can have devastating effects on a zebra. My upbringing was anything but emotionally stable and secure (you can read a bit about that here, but it’s somewhat repetitive to this) and while we all had it bad, it seems like I got the lion’s share of the abuse and neglect. I had the responsibility of raising myself and my little brother, I was looked on as the family-carer and acted as the family scapegoat after my eldest sister left. I also had to deal with being intermittently homeless as a high school student and dealt with a great deal of shame and hurt that my mother refused to protect me from her homicidal husband another way. I also dealt with a great deal of shame surrounding my sexuality well into my twenties and a great deal of physical and emotional stress because of my weight and over sexual abuse I’d experienced as a child and a teen. My siblings all have some of these things, but not all and while my sister had gastric bypass surgery to lose her weight in her early thirties and males generally don’t see the same level or severity of symptoms as women, it’s not surprising that neither of them would be as affected.
Also, with my immune system being so poor (partially contributed to by diet, I’m sure) and having so many infections, the antibiotics probably contributed a great deal to the damage of my mitochondria, accelerating the damage to my soft tissues and neurological cells. I’m also certain that all those manual labor jobs, my love to go club hopping and dancing, hiking and generally being constantly on the go did nothing good to help my joints. From what I know now about how to protect the joints, I was doing everything wrong.
In addition to this, nutrition is extremely important with EDS and what our government recommends isn’t really healthy because it’s been motivated by what our most plentiful crops are here in the US rather than what’s most nutritious for our bodies and it took me a long time to realize that. Not only do we need to be very aware of what foods we’re putting in our bodies, but we need to be aware of the chemicals that come with them, avoiding exposure to pesticides, preservatives and non-food addatives that can make us very sick and compound our already complex problems. I talk about this in depth here and here. We need to be aware that we often develop conditions that cause malabsorption and cause malnutrition. We need to supplement what we lack to prevent many of our symptoms, as they can sometimes be signs of vitamin and mineral deficiencies.
It could have been any or all of these things. It could have been none. Likely, it lies somewhere in the middle. Whatever the case, I no longer feel guilty about my illness in whole or part. It simply does me no good. All I can do is to try my best now and in the future to take care of myself the best way I know how to try to achieve the best outcomes and future that I may. That’s all any can ask of ourselves.
In my next article, I’m going to cover everything I’ve done over the last year (since I suspected EDS was the right diagnosis) to start getting my health turned around, including links to articles I’ve written that offer a step by step approach to how you can, too.
I just published my 100th post on Disability Depot about the dietary changes I’ve made that have helped me to get back to being the person I used to be. A 100th post feels like a bit of a milestone, since there has been many a week or even month that I’ve been too light sensitive to use my computer or too fatigued and brain fogged to write anything of substance. There have been many times I’ve considered giving up, wondering if this blog really benefits anyone, if maybe I’m just sitting here talking to myself, which I can do perfectly fine without the glaring screen and keyboard. But my stats and little list of followers and occasional likes here and there tell me my voice is occasionally heard, even if I rarely receive any response.
Curious, I scrolled through to see what my most popular posts have been. By far, the winner is Fascia Treatments for EDS and Fibromyalgia , which I love because wellness is so important to me and fasciablasting is so integral to my path to wellness right now. I began this blog with the belief that my experiences have coalesced into a certain level of expertise and that maybe someone will benefit from that knowledge. I love sharing what I’ve learned with other people and I truly hope it will bring someone else the same kinds of exciting changes it has brought me.
It’s been a long and winding path, but the road to wellness is rarely a linear one. I had to let go of the belief that the American medical-industrial complex would swoop in and save me, if only I found the right doctor. I had to spend hours and hours reading and considering, experimenting and sometimes failing. It’s like doing the cha-cha. Sometimes your illness propels you forward, sometimes it pushes back.
It’s been much the same with this blog. There are things I wish I’d done differently, things I’ve long since published that I might change or even take back if I could now. Nothing “wrong” exactly, but now I know they were only stepping stones along the way that might have been less significant than originally stated.
Still, despite the changes and additions in diagnoses, the evolution of my therapies, I feel like I’ve put together some pretty stand up advice on how to treat a wide variety of symptoms and helped to spread some awareness and new understanding while giving myself an outlet for my need to stay connected with the outside world while I was forced to live a mostly homebound life.
Thanks to all of my discoveries and hard work, I’m happy to announce that’s becoming less and less true. First came the nutritional and mitochondrial supplements and dietary changes, then I began the treatments with the FasciaBlaster, all the while weaning myself from the staggering number of medications my trove of doctors put me on. All to arrive at a place where I am now able to enjoy a couple of hours out shopping, exploring, talking with neighbors, and generally enjoying a bit of what life has to offer all without the use of any assistance devices.
My latest triumph includes enjoying my first head pain free days in years. As this is such a complex topic, I want to save it for a blog post of its own, but I can tell you what a relief it is to actually be clear of this pain and how it had become so much the norm for me that I didn’t even recognize that it was always there until I finally free of it.
Yet, my disability is far from over. I’m still managing my head pain an hour at a time. I’m still running out of energy after a few hours. I still ache like I worked a 12 hour day after just three. I may feel refreshed from three hours of standing around or a grocery trip after a good night’s sleep, but three days in a row of it and I’m exhausted for several days. I’m still working out some of my food intolerance and need to be tested for all allergens and a mast cell condition, because I need some help with these and all the flares they’re constantly causing.
The road is considerably brighter, though and I find myself daydreaming about a future that might include a career and a social life again. The social life seems to slowly be taking shape. I have neighbors I like to talk to and another woman has started coming over to workout together with the FasciaBlaster. These connections were dearly missed. But the career will have to wait until I am genuinely prepared both mentally and physically to maintain a job and care for myself while maintaining my therapies. I also have to face the fact that it’s possible that I’ll never get there, though I prefer to be optimistic and believe that the steady strides I have attained over the last year will continue.
I’ve thought a few times about revamping the blog, giving it a different name and focus. There are many things I planned for it that I never did and may yet never accomplish though screen glare isn’t really a problem so much anymore. The problem now is that what I want to spend my time on is getting better rather than talking about getting better and that requires a very different sort of work than sitting under this laptop!
This site is not intended to replace the medical advice of a trained medical professional. Readers are advised to consult a physician or other qualified health care professional regarding treatment of their medical problems. The author disclaims liability, loss, or risk, personal or otherwise, which is incurred as a consequence, directly or indirectly, of the use or application of any of the contents of this site or its articles.