Energy Abounds!

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.

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Changes for Capricious & The Zebra Pit

An Update

zebrasAs things continue to change for me and begin to affect The Zebra Pit and my regular posting schedule, I wanted to provide an update about what’s been going on with me, my current goals for the blog and where I see the future headed.

First, I’m thrilled and oh so grateful to report that my health continues to improve. I’ve been enjoying an increasing amount of energy, fewer symptoms with much less severity and significantly less brain fog for some time now. After writing about acytl-l carnitine a couple of weeks ago, I decided to take my dose back up to 2g per day and this increased my energy even more. I also added PQQ just two weeks ago and I can feel myself making greater strides mentally and physically with this combination of changes.

A New Life for Capricious

Over the last few weeks, I’ve been purposely pushing myself just to see how much I can withstand, going from dawn until 9 or 10 at night on creative projects, blog posts, exercise and blasting, shopping, housekeeping, the occasional bit of fun and *drumroll, please* organizing a job search. That’s right. This zebra’s going back to work.

It’s a wonderfully exciting thing to contemplate. Like most people, I had a lot of goals and dreams when I fell ill. My career was completely derailed, my writing career put on hold. I lost my home and my chance to bear children. I can never have some of those things back, but with my newfound health and vitality, I’m beginning to think that my professional goals need not be one of them. We take a lot of pride in our accomplishments and I’m no exception to that.

It’s also no secret that what you earn on disability insurance isn’t nearly enough to live on, so it will make my life easier, from being able to afford a better place to live to making some of the alternative treatments I’ve been missing out on more possible, as well as the possible surgeries I may yet have to undergo.

It’s a scary thing to contemplate, as well. I’ve been on SSDI since February of 2013 and I haven’t worked aside from a couple of work from home opportunities since 2008, one of which turned out to be incredibly challenging due to my fatigue, the amount of brain fog and the relentless nature of my migraines. Every time I have attempted to even begin searching for a job since then, I have suffered post-extertional malaise for my efforts and I end up sicker than I was before.

This time I really took my time before making this decision. Actually, I wanted to wait even longer, but our financial situation is such that it motivated me to pull the trigger a little sooner. I don’t think that’s turning out to be a bad thing. My trial period is going quite well. Today is the first “day off” I’ve really taken in weeks due to health issues and it was more of a precaution than a demand. Still, it’s possible I will begin working and the toll on my body will add up quickly. There’s no way to know until I try. Luckily Social Security has some great programs that allow me to take those chances. Failure won’t be catastrophic. It’ll just be damned disappointing. Even if it makes a significant impact on my health and where it stands today, I know I’ve built the tools I need to succeed if that happens, along with a long list of doctors I can now call on for help.

Recently, I’ve managed to write some pretty darn good poetry and that really feels great. I’d like to try my hand at some complex creative work, as well. Naturally, now that I’m writing again and have recovered enough of my self-esteem to have my imposter syndrome down to a simmer, I would also like to begin submitting some of that work for publication. It too is a task that is equal parts excitement and fear, but certainly the emotional coaster ride. I haven’t had anything published since 2012. It would be great to get my name back out there. Unfortunately, unless you’re a Stephen King type person, it’s nearly impossible to make a living off of creative writing though, so find a job I must and I feel like I will enjoy doing so if I can find something in any way related to writing.

It’s all a lot to manage, but if I pace myself and use my energy wisely, it can be done. It may take me a while to find a job, though I’m getting a great response to my resume. I’ll be using that time to my advantage as much as possible.

What’s Next for The Zebra Pit

As I go through all this wonderful scariness, I will be sharing it all with you here in the Zebra Pit, just in case you too find yourself ready to embrace working after developing your own protocol and find you too are in the position of going back to work after long term disability. I plan on discussing SSIs Ticket to Work program, the Trial Work Period (TWP), Work Incentive Planning Assistance (WIPA) programs, and things like Substantial Gainful Activity (SGA), so you have some idea of what to expect. Expect some of this information to begin showing up as early as next week.

I also plan on talking about practical things like what to put on your resume, how to handle awkward questions during interviews and how to handle special accommodation requests as I go about navigating these things myself.

I also plan on continuing the discussion on health and wellness, which will always be a top priority for me. How can I work and function well without all of the things that keep me healthy? As I begin working some of these things will likely need to be adapted or modified, as well. I will no longer have the luxury of time, but I will have more money to pay for services, so hopefully that balances out and I will have more advice to offer on a wide variety of available treatments.

Some of the upcoming topics I have planned for the Pit are to finish comprehensive articles on each substance I use to maintain a healthier, relatively pain-free life. I also want to write a comprehensive guide to FasciaBlasting for EDSers and Spoonies. The more I get to learn about the broad populations finding relief with this tool, the more I want to get the word out about the product and its benefits.

Finally, I also plan to begin sinking a little money into The Zebra Pit to make it a higher quality blog with better content and to start driving more traffic here. I think we offer some quality advice and would like to see it help more people while also having the opportunity to make a little money through advertising while keeping my content free to subscribers. I’d like to add additional contributors with their own ideas and content, so if anyone is interested in sharing their wisdom, shoot me an email on the contact page.

My Ehlers-Danlos Story

img_20160808_210746.jpgNow 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 us said that EDS is nit 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 doiresys and tables and was considered 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 iften insisted I was starving and I had a great deal of diffucukty denying it. My hormones also fluctuate quite wildly, which is also common in EDS and could have been a contribuiting 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 a week 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.

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. 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 tge 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 and I didn’t push. 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 tgat 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 tgat offer a step by step approach to how you can, too. 

100th Post and an Update

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!

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Diverticulitis & Dread

bellyMy new year hasn’t exactly gotten off to a great start. I was indeed fighting chronic diverticulitis, just diagnosed on January 2 and having dealt with the worst of it over the holidays and these last two weeks. I’m still not confident, though I’ll be done with the antibiotics tomorrow, that I’m in the clear. It takes so long for my bowels to correct from infections that I will be questioning for weeks, no doubt. I’m still having pain and far from regular output, though it does seem slightly improved each day. The best I can hope for, I suppose.

I can’t say I understand why my GI feels it’s OK to allow me to go months with pencil sized stools. It’s obvious my bowels are swollen or partially blocked, but she feels miralax to be an adequate solution. I find this insane, for a healthy person, but particularly for the chronically ill. Any infection causes my overall health to deteriorate. On top of the bowel pain, nausea, swelling, and bloating of the diverticulitis I have to deal with flagging energy, increasing dizziness, non-stop migraines, joint pain and muscle soreness. Nearly two of those weeks were spent in bed because I couldn’t tolerate activity, sound or light. But in her eyes, a little miralax will do it. I know I need to fire her, just like the five before her, but then what do I do? I guess rely on urgent care, as I did on January 2.

As it is, our standing agreement is to only meet if something goes wrong. I called her, but the office was closed in observance of the holiday. I’m sure you won’t be surprised to learn I was relieved it was. She probably would have sent me home without a CT, unlike urgent care. The GI before her refused me a CT once as well and as a result I got peritonitis. When one of these doctors’ negligence kills me, my husband is going to hit the lottery. Pretty sad when that’s your silver lining.

So this morning I crawled out of bed on far too little sleep to make my first therapy appointment, which was scheduled too early in the day for me and cost me a great deal of sleep because I was very anxious about attending. I considered a number of times using my diverticulitis as an excuse to cancel, but I knew I could probably hack going today. I sucked it up and got ready to go. Then I checked my phone and noticed a voicemail. The therapist was out sick and they need to reschedule. Blast it all.

I seriously considered not calling back. I mean who really wants to go into an office and admit that she’s allowed her own mental health to go down the drain with her physical health despite all the years of hard work she did to overcome a lifetime of abuse, neglect and codependence? Who wants to walk in, sit down and confront a perfect stranger and admit to them the worst parts of one’s self? NO ONE ever. I don’t even know if I have it in me anymore. But I do know it’s the only way I’m going to get help for the masses of anger and resentment I still cling to.

I have made some headway on my own. Over the weeks of contemplating the things I want to talk about, the things I need to address, the possible nature and origin of the problems plaguing me I have begun to piece some of it together and have found more peace than I’ve had in a long time, but if I want that peace to last, I have to be honest with myself about that peace; it’s not built on a strong foundation with clear answers. It needs to be fact checked. It needs to be explored more deeply by someone who doesn’t have neuro-cognitive problems and I need to be held accountable by someone else. I admit, it’s all too complex for me to handle alone. So I called and rescheduled and my gift for someone else’s illness is that I get to wait another month before my first session. I hope this isn’t a habit. It’s hard not to feel a little let down by yet another care provider, before I’ve even met her.

It’s incredibly difficult to find therapists in the area, so I’m going to give it a chance. I know someone who sees her and they really like her so I’m hoping she’s going to be a good fit. I’ve been looking for years. It’s especially hard when your only insurance is medicare. It’s extremely important to me, though. I feel so broken and so alone, yet I can’t seem to help keep myself from doing things that only seem to reinforce that aloneness.

I know I am not alone in that feeling and that’s why I don’t mind sharing a bit of it here.

I know that because of the way I was raised, the conditions under which I grew up, I am not and never will be a “normal, healthy individual.” It took a lot of hard work and vigilance to come somewhere close to being healthy minded, which I felt I had prior to my illness taking over my life. Add to that the usual stress and strain of chronic illness (being ostracized by friends and family, sequestered to the home by illness and the loneliness that creates; losing your livelihood and sense of autonomy, losing your sense of purpose and place in the world) and combine it with the depression, anxiety and rage that comes with dysautonomia and a system that is often parked in panic mode and a brain that takes to obsessive thoughts and you have, well…. Me and that me is a supreme mess more often than not.

Since I’ve gotten the dysautonomia mostly under control, it’s been a lot easier to work on the other issues. Without treating the dysautonomia, there’s simply no chance. But I feel like it could still use some work and I’m interested in seeing if there’s something out there my system can actually tolerate that might help me with it. Of course, the rest is on me. It feels daunting and not particularly like something I want to do, but if I want to be in a happy marriage and have some semblance of a happy life despite the cards I’ve been dealt, it’s something I have to do. Of course the hardest things usually turn out to be the best, so long as you put your all into them and there is no other way to do therapy; not if you want results.

Oddly, a bit of motivation came my way last week. On Friday, I found a happy new years message on FB from a very unexpected source; my 11 year old niece, D. Being estranged from her father/my brother for over four years now, I didn’t expect it. The terminus of that relationship caused the greatest pain because it meant the loss of his three daughters in my life, all of which I had very close relationships with. I’ve considered trying to contact them when they got older, but I figured that was probably some years off.

The funny thing is, I’ve been thinking a lot about D and contemplating trying to contact her or her mother on FB, but feared her mother wouldn’t let me talk to her and worried a great deal about upsetting D, as she’s a very sensitive child, much like I was. Luckily, the decision-making was taken out of my hands and we had a wonderful chat. The bad part is that she lives with her mother several states away and actually seeing her in person may never be attainable unless I am willing to work something out to get time with her while she’s with her father.

Her father, actually both my siblings, dumped me like a hot rock because I was unwilling to engage in their unhealthy behaviors and they weren’t able to use me for their own purposes (babysitter, family planner, savings & loan, holiday hostess) anymore due to my illness. In part, it was those girls that made me stick around longer than I should have, because my family has always been the worst possible place for me. I wanted to provide them with a safe space and an example of a world free from violence, manipulation and codependence where women were allowed to be their own people.

I still want to be in my niece’s lives. I still love and cherish them. I still check on them even though I know there’s little hope of them becoming anything other than variations on our own depravities, just as we were our parents. But right now I know I’m not the person I need to be in order to show them there is an alternative to giving into it. I may not have had my own children, I may not have an example to set for them, but I do have my nieces and my stepson and they need to see that from me, understand the possibilities and that there is hope even for the most fucked up of us. We can be more than the sum of our experiences. I proved it once and I can prove it again, sick or not.

I only hope that if I do get the chance to spend time with her in person my EDS will tolerate the exuberance of a ten year old. That is one thing of which I truly have no control. I guess we’ll deal with that if it ever comes to fruition.

Happy New Years

Draining the Chronic Illness Well of Anger

td81_chandraartI wanted to take a moment to wish everyone a happy and hopefully more healthful 2017. I know we could all use it, no matter what kind of year 2016 was for us. I find myself in much better health at the end of 2016 than I had at the beginning; a blessing to be sure. It is not without its frustrations, complications and stalemates, of sorts. Perhaps this is one of many reasons I’ve remained silent all these months, though mostly that has been to spare the world a rage so scathing simply standing near me would singe the hairs right off your body.

To explain all this rage would require explaining my life and none of us have time for that. But I know exactly where it comes from and why it is all consuming. I have a feeling many of us who struggled with EDS just enough through our early lives to know that “something is wrong,” but not enough to show on tests has that all consuming well of anger. It lives on disbelief, denial, being pushed constantly beyond our limits. It feeds off our feelings of ineptitude, inadequacy, envy and enervation before it even wallops us to the point of becoming an actual, definable, chronic illness.

Then comes years and years of trying to get a diagnosis and as our bodies fall apart, so too do our lives, our families, our financial well-being, our homes. We have no choice but to watch everything we worked so hard for, harder than any healthy person can ever imagine, crumble before our eyes. So quickly it topples, if we blink, we might miss it.

All the while, the disease continues to ravage us to the point where we begin to dream about the good old days of just envying others for their seemingly boundless energy and perfectly working brains and bodies: Because by this point for many of us a decade has gone by and we still have no diagnosis, no relief and we can’t even accomplish something as simple as sitting up in a chair without severe head pain, dizziness, and vomiting. At this point, many of us can wish for little more than death. After all, what life is living in a dark room, completely alone, with nothing to entertain us but our tortured thoughts of the past and our pain?

I myself left regular full-time employment in late 2008. Nine years later, I am technically still waiting on a diagnosis because I haven’t had the genetic testing that will confirm it. I have finally located a doctor, but she isn’t taking new patients. I call every month. I often shrug and wonder why I bother every time I make that call.

Why? Because the reality is that I know she can do very little more for me than I’m already doing for myself. I’ve found the best things I know to care for myself and while I realize their limitations, I also realize that there’s little more the medical industrial complex offer me. The symptoms that persist tell me I likely have a chiari malformation that’s being missed by my neurologists’ refusal to administer a standing MRI (more denial) and my GI’s refusal to acknowledge and test for gastroparesis and/or chronic diverticulitis (yet more denial).

Without addressing these problems, I will never achieve better health than I have right now, nor will I likely live long. However I am literally out of options until I get with this new doctor who hopefully knows specialists who are actually familiar with these being common problems in EDS or knows how to address them herself. Of course with a Chiari, there’s little good news to be had, anyway.

So we spend our lives knowing we are ill, watching ourselves decline helplessly, feeling forever like we’re not being taken seriously, like our concerns aren’t being addressed with the level of seriousness they deserve, like we’re being treated like alarmists, liars, insignificant and meaningless until it’s too late, far too late.

I suppose the consolation in all this is that I found the therapies I did, which make me far more comfortable, mobile, clear-headed and energetic than I was previously. It’s not enough to give me a “normal” life, but it’s definitely better than being stuck in bed suffering 100% of the time. Unfortunately, it’s done little to empty that well of seething red anger, either.

My new year’s resolution is to find a way to drain that well. I’m starting therapy mid-month. I’m also going to try to go back to blogging some. Honest J

What is Ehlers-Danlos Syndrome (EDS)

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My beautiful blonde friend on the left is the last of her kind in the world. Blonde zebras were the rarest of rare animals to begin with and like so many animals they have fallen victim to global warming, so this sad and gorgeous captive is the last known to exist. I think of her often and whether she suspects how tragically special she is; feels the weight of it.

Her story came across my Twitter feed almost magically the week I began to really study Ehlers-Danlos Syndrome as if to reassure me that I was no where close to the most tragic of the animals that day or any other. Get over myself. So I made her my profile picture to remind me that one life is all any of us ever have. No matter how tragically rare it is, no matter how alone we feel, despite all the agony, there is still beauty in it and somehow that beauty keeps propelling us on.

Zebras have a strong connection to all Primary Immunodeficiency diseases, which is well explained by the folks at the Immune Deficiency Foundation here. More recently, zebras have been adopted as the semi-official mascot of Ehlers-Danlos Syndrome (EDS). EDS is one of many rare PI diseases the zebra was initially used to encourage doctors to sometimes think zebras instead of horses when “hearing the hoof beats” of autoimmune disease. Many people with EDS collect zebra items and use them as tools for awareness and more companies are coming out with zebra-striped mobility devices just for us.

What is EDS?

In short, EDS is a rare,genetic disorder that causes the immune system to disrupt the body’s ability to manufacture healthy collagen. There are several different types of EDS, each with different symptoms and prognoses, but all include this universal factor. Though most people think of skin and beauty when they hear collagen, collagen is used to make up almost every kind of tissue in the body, including but not limited to tendons, ligaments, fascia and other connective tissue, bone marrow, organ tissue, vascular tissue such as veins, arteries and capillaries, hair and nail tissue, and more. Collagen is literally the glue that holds the body together and when it starts to break down it becomes stretchy and unreliable, causing very unpredictable things begin to happen to every system in the body:

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Diagnosis of EDS is complex and difficult. Finding a doctor who is fully trained and equipped to diagnose it is even harder. Of all the types of EDS, only one cannot be confirmed via genetic testing, yet many geneticists will only work with adolescent age sufferers and finding someone who can diagnose based on symptoms alone takes a great deal of time and patience. Organizations like Ehlers-Danlos Support UK and The Ehlers-Danlos Society can help. Currently, the most popular diagnostic criteria, especially in the UK seems to be the Beighton Score and it’s accompanying criteria:

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WARNING: It’s important to understand that as we age, our flexibility changes, so it’s possible that you may have met the flexibility requirements at one time, but no longer do. Be sure to discuss these concerns with your doctor, as multiple dislocations and injuries can seriously curtail hypermobility. Also, please note that while you may still have it, testing your hypermobility CAN BE DANGEROUS TO A PERSON WITH EDS. While hyper-extension never hurt me when I was young, every time I hyper-extend something now, it now takes anywhere from several days to weeks for a joint to heal now and that damage is permanent!! If only I had known what I was doing to my body with all the gymnastics, yoga and crazy dance moves of my youth 😦

This diagnostic criteria, along with all the reading I have done is the reason I don’t feel I really need to wait for a professional to confirm my suspicions. In addition to the staggering number of boxes I can check off on this list for myself, my family history, which I am intimately familiar with back to my maternal great grandmother, neighs zebra. I’m surprised we’re not hoofed. With a lot of diligence and a little luck, I have actually managed to track down both a doctor who diagnosis and treats as well as a geneticist who works with adults in not too far off Lexington, KY out of the University of Kentucky, so hopefully I will have confirmation sometime around the new year.

If you suspect you too have EDS, I strongly encourage you to do your research, find a doctor and GET DIAGNOSED. There is no cure. There aren’t even effective treatments. But the reality I’m finding all too quickly with this disease just as ME/CFS is that it’s probably not nearly so rare as it is massively under-diagnosed and misdiagnosed. EDS patients are going to have a real fight on their hands for recognition and funding to get sufficiently available, adequate treatment.

Neuro Consult=Mind Blown

This post is an update on my neurology consult, discussed here: Recovery is My Full-time Job

Anymore it seems every time I go in for a consult with a specialist, I’m in for a real mind-fuck. I guess I shouldn’t be surprised, I am consulting with neurologists J. It took me several days to process the experience of meeting with the neuro-muscular specialist before I could decide exactly how I felt about him and the chances that he’s going to give treating me and my ailments. In part, that’s probably because I suffer from some pretty significant cognitive deficits and by the time I hit his office, I was in full flare up mode from the immense mental and physical stress of the experience. It’s also because he’s clearly uneducated about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and wasn’t exactly open to engaging about it or my suspicions surrounding a possible alternate or comorbid diagnosis of Ehlers Danlos Syndrome(EDS): However, he did take all of my symptoms seriously and had some good alternate diagnoses to explore, so I agreed to undergoing more tests, some of which will be excruciating, but them’s the breaks. What’s most interesting of all to me, was my emotional reaction to all of this.

I can already tell you the battery of blood tests he had drawn have come up completely negative. This is not at all surprising to me, as I have yet to have a helpful blood test and that’s pretty normal for someone in my position. The tests I do expect to be more telling are the excruciating ones that come in September and will be testing my nerve and muscle tissue. The diseases he is looking at are Myasthenia Gravis (MG), Sjorgren’s, various Mitochondrial diseases (ME/CFS is a mito disease, but he didn’t know that, either), and he did the blood work to make certain I don’t have Lyme disease since I’m not certain anyone has crossed that off the list (Lyme is commonly misdiagnosed as ME/CFS).

I’m fairly certain that the tests I’ve been through already have ruled out Myasthenia Gravis, Sjorgren’s, and Lyme, though I’m not completely sure about MG, as I know muscle biopsy is used as confirmation. Muscle biopsy can also be helpful for ME/CFS diagnosis and tissue biopsy is definitely necessary for diagnosing other forms of mito, so I’m all for getting it done, pain be damned. Hell, I’ve had a kidney biopsy. What’s a little muscle tissue?

What I’m not looking forward to is another EMG, an even more painful kind than I had before. The first was excruciating enough. In fact, I thought the whole time about the human subject review board and how it ever got approved for testing let alone for regular use on patients. This type of EMG involves a series of shocks in the same place rather than just one and then moving on to the next appendage. Apparently, this tells them something about signal interpretation or…. Who knows. I was wearing my ME/CFS/Fibro brain. Yep. I’m so thrilled about this, having fibromyalgia and neuropathy and all, which means that my pain responses are set to super-duper-mega-sensitive. Perhaps this is why I feel it’s inhumane. I forget everyone doesn’t feel things the same way we do sometimes.

As much as I’m not looking forward to these tests, they need to be done so I can either get a change in diagnosis and get treatment –OR—finally know for sure that I do have the correct diagnosis and if I can’t get this new doctor, who while misinformed about ME/CFS seems quite intelligent, on board to treat me for ME/CFS, then it’s time to move to a place where someone will. Of course, I still need to find someone who can say yay or nay to the EDS suspicions, too.

By the time we got through my symptoms at the appointment, I was a worn out dishrag. I just had nothing left. I’d had an attack (right in front of the doctor, yes!), I was exhausted and starting to get confused, so when he went for the door, all I had the thought to do was to hand him all my very carefully chosen research, which he looked at like a venomous snake, and try not to cry when he left the room. We never discussed my medications, next steps, whether or not he was actually taking me on as a patient, nothing.

I don’t operate well this way. Unless it’s a book or play, I like to know what’s coming next. It also left me in the position of having absolutely no pain meds so I had to go begging my GP like a dirty druggie (that’s how his office always makes me feel, though he doesn’t). As a result, the GP cut down on some of my meds, but as a bargain he gave me a steroid. I don’t know if that’s good thing or not. I’ve been hearing more and more about steroid use being bad if you have EDS. If that’s true, the last rheumatologist really wasn’t been good for me, or I should say even worse than I thought.

Anyway, I wish I had thought to say, “I know you’re skeptical of the ME/CFS diagnosis, I was too. And of course if we can uncover another diagnosis that comes with established protocols and treatments, I’d be truly thrilled. If that doesn’t happen, though, I hope you’ll read this information and see the advances they’ve made in research and understanding what ME/CFS is and the treatment options I’ve gathered from specialists around the world.” That’s what I meant to say. That’s what I’d prepared to say, but somewhere in the shuffle, cognitive dysfunction ate my simple little presentation and I was left with “Here. I got this cookie for you.” One of so many reasons I hate this fucking disease.

So, I’m going to email him and try to explain my position, quite possibly with the very same words from above (why reinvent the wheel) and hope that he hasn’t already thrown out all my carefully curated research explaining the cause and effect of so many of our symptoms or the wonderful treatment options that went with them. Of course I still have them all, so I can reinvent that wheel, if I must.

Actually, I sort of do plan to reinvent that wheel for my readers here, so you have that research and can use it however you wish; give it to doctors, use it to educate yourself or a loved one, use it to silence a denier, share it with the community at large. They are all great studies and treatments that come from valid sources. I’m not going to do it in this post and I may not do it all in one, but I probably will write a post about how I chose what I did and why. There are more and more rare diseases cropping up all the time and it’s important for all patients, but especially those who fall into one of the rare or challenged disease categories to be well informed and ready to advocate for yourself (or have someone who is willing to do it for you).

The thing that I really had difficulty grasping (and took me days to admit) was that I had a bit of a splinter in my paw over looking at alternative diagnoses. This surprised me. In the past, I’ve always gone to new doctors seeking other possible diagnoses first, treatment second. I hadn’t realized a shift had taken place somewhere in my mind, a shift that meant that I had come to accept that ME/CFS was mine and somehow, unfathomably, I belong to ME/CFS.

I know, this sounds insane right? Who wants to be married to a crazy fucking disease that’s robbing you of your mind, your motor control, your ability to sometimes leave your bed? I sure don’t, but I guess somewhere between fighting for our dignity and respect and defending the validity of the disease, while making friends who also carry the same diagnosis, I have finally come to feel like I am part of something again and for a moment that something very much felt threatened. I don’t want to lose my pack by being forced into a new kennel. But I know logically that the real friends I’ve made aren’t friends based on diagnosis alone. Heck, my closest gal pals don’t have any overlapping diagnoses with me. It’s all silly, really.

But then I realized it’s not that alone. It’s also about the number of hours I’ve dedicated to the study of the disease, my commitment to the advocacy of its patients, the prospect of the idea that I’ve spent 15 years without a proper diagnosis. Those things are huge. Of course it’s going to be significant, emotionally and otherwise, if I do end up with a different diagnosis, no matter how good or bad that news turns out to be.

Another thing I want to do as a sort of a spin off from this experience is to spend a little time showcasing some of the illnesses this new doctor chose for me. Some of them are phenomenally similar and I can really see why he chose them. These are peeps that should definitely be part of the spoonie spectrum if they aren’t already and sharing in the support of community (and very well may struggle to find people with their own diagnosis). Precisely one of the reasons I didn’t dedicate this blog solely to ME/CFS, FM or even just neuro-immune diseases.

Finally, I will also be writing a post about how to best prepare for a consultation which will include some mistakes I made both preparing and during this visit, but also things I did right. And of course I have several other examples to draw from, so I feel like I’m becoming a bit of an expert on the subject. I’ll include more discussion in that about how I could have possibly prevented the level of fatigue and post-exertional malaise I experienced after the appointment, as well. And maybe someday I will actually get to why I think I have EDS, and make some of the fascinating comparisons I’m finding between it and ME/CFS. So many fascinating things to write about, so few spoons!

Recovery is My Full-time Job

(or better yet) Why Neurologists Make Me Neurotic 
For 15 years I’ve searched for a doctor who can explain to me why my body has been failing me since I was a teenager. I begged for explanations, diagnoses, treatments and answers. Instead I was told repeatedly I just needed to lose some weight and exercise some more. This went on and on and on until organs began failing me.

I’ve now dealt with so many specialists who are so underwhelmingly special that I’ve come to trust no doctor to do their job for me. Indeed, thus far I’ve had to handfeed them the only successes we’ve seen in my recovery. My payment for doing their job for them and still paying them for it? I’m no better off than I was before I met them.

I also have the problem of coming to resent the hell out of them because they often turn out to be little more use to me than a prescription pad. I hate to sound this way. They worked hard on their education and I value education one hell of a lot, you have to in order to teach in today’s higher education climate to be sure, but they aren’t educated about my illnesses and they either don’t care or don’t see this as a deterrent to treating me properly. I’m sure they make someone a fine doctor, but that someone sure as shit doesn’t have a rapidly deteriorating spine and a dual diagnosis of ME/CFS and FM. Still, it doesn’t matter, I come to resent them, lose respect for them, ask too much of them and before you know it, one of us is ending the relationship and it isn’t usually with a shaking of hands.

The neurologist I’m meeting with today is promising as hell. He runs his own neuro-immune clinic. Sounds like the perfect place for a person with a neuro-immune disorder like ME/CFS to go right? Only the registration person couldn’t even find my illness listed in their system bo matter what fucking name I gave them and I even pulled out CFIDS and SEID. Ugh. So is he another one of those people who thinks ME/CFS and FM are the same thing or a denier or what? I have no idea what I’m getting myself into, but I’m going in, both barrels loaded.

I’ve prepared for this appointment so thoroughly that I’ve basically prepared a seminar on ME/CFS, if not a 6 week course. I mean seriously, I have a 51 page physician’s primer on the disease, 8 or 10 of the most important studies to date and lists of the most effective treatments as named by the top experts treating ME/CFS, because even if this guy is a denier or misinformed enough to think that the two diseases I have are one and the same, he’s the only option I have left in the greater Cincinnati area. It’s going to become my job to disabuse him of that notion. So I have to bring him to the light and get him on board or I’m out in the cold until we get the money together to move to an area with better options. I figure if he is more knowledgeable than I give him credit for, if I haven’t insulted him out of the box by bringing in my poor murdered tree of information, he’ll know I’m knowledgeableabout my illnesses and take my care very seriously. My job is my recovery.

Still, I’ve been thinking about how much more people like us have to go through for a stupid doctors appointment, especially a consultation. Filling out the paperwork alone took me 5-6 hours because of the vast history and number of medications I’m on. On top of it I have to worry about whether or not she or ge thinks I’m a crackpot, knows any actual facts about the illness and whether or not they will bother to educate themselves or will have blown me off before I make it out the door. Which means I also have to dress, speak and behave a certain way so I can have my respect and benefit from it too. Not so easy when you’re so angry about how you’ve already been treated by the medical establishment for over 15 years.

That’s why I’m going to be working on a primer of my own to share with all of you lovelies on how to get specialists to take you seriously, because like all human interaction it’s an art form and some of us are a little ahead of the game than others given all our fabulous trial and error. Why should you suffer our same mistakes? 

I will also share the research I chose so you both have access and can understand why I made the choices I have. Of course, this doesn’t little for the stress and anxiety of the appointment itself unless you’re one of those dudes that could sleep like a baby during exams week. I’m a mess and have barely slept the last two days. It doesn’t ultimately matter how well prepared I was in that respect or how many months ahead I started (3), I’m still running each scenario through my head like Urban Meyer on game day.

Have no doubt, I will let you know how it goes. 

Love, 

Your faithfully exhausted pigeon 🙂

What Got ME Out of Bed

Levee
Me and the man who finally just gets to be my husband again on the best night we’ve enjoyed out in years!

I’m happy to convey this time the reason I’ve been so lax about posting hasn’t been because I’ve been ill. I haven’t been writing much because I’ve been so busy focusing on optimizing my protocol and my own health. The results have paid off! So I’ve been spending all my energy on rebuilding my strength and getting my life back in order rather than talking about ME/CFS, FM and my ever growing suspicions that I have EDS, inherited through my maternal line.

Slowly but surely now that I have the right combination of medications, vitamins, and supplements, I am able to remain upright longer and be more and more productive each day, mentally and physically. I’m also enjoying a newfound emotional stability that I haven’t been able to enjoy since my illness began to consume my life way back in 2010.

I’m still tweaking dosages for optimal health and I have a ways to go to get to a normal baseline (if that can even be achieved for me after 15 yrs), but this has gotten me a great deal more time out of bed, much improved vision, far fewer and less severe headaches, muscles spasms, greatly reduced the number of paroxysmal dystonia seizures I have, almost completely cut my nausea while increasing my appetite, greatly reduced my pain levels, fatigue, confusion, cognitive and memory dysfunction, depression, anxiety, insomnia, dizziness and light sensitivity. In whole, it has improved my quality of life exponentially while giving me a chance to get moving again and rebuild a little of the muscle mass I have lost (which is a lot).

Additionally, it’s giving me the chance to care and do for myself and my home a little more, which is so precious to me. You just don’t understand how precious these tiny little things become until you are robbed of them completely. Just being able to bathe myself the first time was a major triumph. Last evening, we had dinner out and went browsing in some shops and walking along the Ohio River. We spent 3.5 hours out and although I was really feeling it by the time we got home, I knew how to counteract it. That translates into another great day today, with energy to do some housework and enough left over to cook dinner for my husband for the first time in probably more than a year.

I hope the neuro-muscular specialist I see at the end of July will help me to improve even further, faster (if such a thing exists with ME), but I couldn’t be more pleased with the shift in my health right now. I’m hopeful this time it will prove more lasting, as my husband is back to work and we have the steady income to ensure I can not only keep everything I need in stock (medicare and medicaid won’t pay for much of what I take), but that I can add whatever else I may need in the future. Based on my history, I know I will have to carefully monitor my health and will probably have to regularly adjust my dosages and possibly continue to look for new and interesting ways to combat this disease.  These are only a few of the ways I can think to do that, short of moving to a major metropolitan area complete with one of the top ME/CFS experts in the country.

I will also have to respect the boundaries that my body and these illnesses set, which means no more physical activity than I can actually handle in any given day. This can feel severely restricting and quite frustrating especially when you feel about 90% better than you have in the last two years, but without it there’s no point in doing any of this other stuff. That’s why I’m raffling off five free downloads of the new and exciting Ease ME/CFS Helper App and recommend anyone with ME/CFS or another mitochondrial disease use such an app to help them determine what level  of activity is right for them and ensure they continue to maintain it.

If you decide to try any of these drugs or this protocol on the whole, I urge you to remember that we are all individuals with individual problems with the need to adapt things for our own bodies. I will say though that I find these all to be quite safe, as our body either manufactures or gets them from a regular diet and I have no problem recommending them to anyone: However, if you have any particular allergies or dietary restrictions of any kind, you want to carefully consider whether or not these are right for you and be sure that the product you choose is free of any allergens you may have. You also want to make sure they interact well with any medications you are on and let your doctor know you take them. I don’t clear every single thing I do with my doctors, but I always let them know I’m taking it. I only start one new treatment at a time with at least two weeks apart. This way if I do have an allergy or problem with it, I know right away what it is.

So here’s what I’m taking, along with the dose and schedule, what it does or prevents, and what form I take it in. I will also include links of the particular kinds I take of some of the more unusual stuff to give you a jumping off point and I think they are affordable, quality products that I chose very carefully, but I urge you to make your own choices.

Name Dose Schedule Benefits/Notes
L-Glutathione reduced, capsule 500mg 1x noon For energy production or ATP. See this article. I am switching to whey protein, as I feel I may be missing out on some of the somatic benefits by taking the glutathione supplement. It will also eliminate the need to take some of these other supplements separately. I’ll let you know how it goes!
Curcumin, capsule 665mg 1x a.m. See my article on the wonders of curcumin and how best to choose it. This stuff is truly amazing and a must have no matter your level of illness. You csn also get more specific informationon all it treats here.
D-Ribose, powder 5g 2x a.m., noon For energy production in the cells that make up the muscle. I will take a third dose if I’ve depleted my energy beyond what’s safe and feel a seizure or other ill effects coming on strong. See more info, here.
Oral Rehydration Solution, powder 1 packet in 1 ltr water 2x spread over day For Orthostatic Intolerance. See my article on OI and ORS.
Acytl L-Carnitine 1g 2x a.m., noon Energy Production. I can repeat this a third time as well, in an emergency situation. Combined with the D-Ribose, it calms everything down within 45mins-1hr. Read more here.
Vitamin C 1000mg 1x a.m. Immune booster, also helps to process Carnitine
B complex with Additional B6 and B12 1x a.m. B complex helps process Carnitine. I also always test low in B6 and B12, which can contribute to additional health concerns, so I take additional amounts. B complex offers very small amounts of these. Some doctors say they don’t process in pill form, but they do for me.
L-Lysine  1000mg  1x am I should be taking this to make the carnitine easier to process, however it is also in whey protein, so I’m going to try that instead.
Vitamin D3 5,000mg 1x a.m. + add’l dose 4x per week D3 deficiency. Most people with ME/CFS and FM are deficient in D3 and should be tested. You need to be tested regularly, as it is possible to have too much, as well. This is simply how much I personally require to stay in regular range. I have to be tested every 6 months.
Probiotic w/ Prebiotic 10 billion/ 15 strain 1x a.m. or up to 3 x a.m., noon, p.m. An excellent probiotic with prebiotic is absolutely essential with ME/CFS and FM. I absolutely cannot maintain any sort of regularity without it and am constantly sick if I’m not taking one. This is the first line of immune protection and gastric health. I will be writing more on this soon, I hope.
Miralax as needed 1x noon Even with a great prebiotic, I still deal with constipation on a regular basis, probably because I still struggle with low blood volume and poor water management in my body overall, but also due to the EDS and because I’m losing feeling in my abdomen, which means I’m also losing nerve induction. Your doctor can prescribe this so it will be covered by insurance, medicare/caid
Magnesium 250mg 1x a.m. deficiency, migraine prevention
Medical Marijuana (mmj) Whole bud, Vaporized As needed, usually 1-2x at bed or if I wake mid-cycle pain relief, anti-nausea and hunger inducing, controls muscle spasticity, seizures, headaches, nausea and prevents insomnia. I would never sleep without it. See my post about it, coming soon.
Meds prescribed by doctors These of course are things you’re going to decide with your doctor, but here are a few things I take that might help you; an additional anti-inflammatory, a blood volume expander (midodrine), muscle relaxer, toradol and tramadol for pain (neither are opioid or habit inducing), a mild anti-inflammatory, allergy medications.

To help you decide about what doses you might start off with or how much of this stuff you might need, I’ll tell you just a little about my own. Untreated or while missing almost any one of them, I am in the severe category. I am forced to spend the majority of my time lying down because of my dysautonomia and being upright and/or expending too much energy greatly exacerbates my symptoms. These drugs, combined with rest, keep my symptoms down under a 3 on the scale of pain and symptoms. With their help, after being on all of them for approximately 2 weeks at the dosages listed, I only need to lay down on occasion. Without them, I am unable to tolerate sitting, standing or walking at all. Indeed, I can barely stand to exist and suicide is almost constantly on my mind. Just three years ago, glutathione and the vitamins listed was enough to keep me going, though. My recommendation is to start with either whey protein or glutathione and curcumin and built on through there along with whatever vitamins and minerals you need. A healthy diet free from processed foods and artificial sweetners can really go a long way, too!

Best of luck! Please don’t hesitate to ask whatever questions you may have. I have this blog because I really truly want to help others!