Exercises for Jamming Ankles

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In this video, I demonstrate a series of progressively more challenging exercises you can use to strengthen the ankles, calves and feet to help zebras and masties avoid subluxations, dislocations and jams. These exercises are easy to do and require no equipment.

I finish the video with a hands-free foot and calf stretch used to comfort achy muscles. Remember, stretching and exercise built around stretches, such as yoga, is not recommended for people with collagen issues and these should only be done when dealing with chronically tight tendons or muscle spasms.

Have an area that you’re looking to improve and not sure what to do? Drop me a message and help me decide which exercises to highlight next!

On Independence Day, we took my step-son out for a meal on his birthday. I wore 1 1/2″ high heels for the first time in almost a decade without any foot or ankle pain! Yay!

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Organizing Your Fitness Routine

Exercise is essential to caring for conditions like Ehlers-Danlos Syndrome (EDS) and POTS. In EDS, building muscle can reduce subluxations and dislocations, improve proprioception and reduce injury. In POTS, a safe building up of strengthening and cardio can reduce overall symptoms by increasing blood volume and circulation. In both of these conditions which often run concurrently, cardio and strengthening can reduce pain and inflammation, and can increase energy levels and enhance your mood. Of course there are many other benefits to exercise as well, which you can read about in these articles: Get Moving! EDS and Exercise and Exercise: The Best Remedy for POTS.

In the video below, I talk about ways to organize your fitness routine and exercise equipment to give yourself your best chance at follow-through. I also talk about where to exercise to avoid more injuries and provide a few additional tips in this brief video.

What are some of the things that help keep you motivated to do the work necessary to keep moving? Share your tips in the comments below.

Capricious’ Big Gay Day Out

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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

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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.

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Candles not included (LOL). The trans flag is for my niephew who recently came out. at 10. I’m so proud of his bravery!
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Since we’re on the subject, I painted this for my niephew Tom when he came out. I wanted to give him something that reminds him he always has an ally in the family. He is the only family member still in my life.

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.

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Behind these two rainbow warriors is the Purple People Bridge, which is starting to look a bit more gray than purple these days! And check out that shirt. Awesome isn’t it?

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.

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The Festival west of the Purple People Bridge as things are winding down. It ran the entire length of the Serpentine Wall in this direction.
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A small portion of the festival on the east side of the Bridge, which continues beyond the trees in the background.

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.

Introducing Vlogs at Zebra Pit

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!

Fascia Treatments for EDS: Moving into Maintenance Phase

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It’s been a long time since I’ve written about the fasciablaster and faceblaster. That’s in part because I’ve been doing a bit of an experiment. I quit doing my full routine of fasciablasting to see what would happen.

In the spirit of full disclosure, my experiment began with a lack of time and energy. I was working and having a great deal of difficulty getting full blasting sessions in. Soon, I was only blasting my head and neck every couple of weeks and doing spot touches on my hands whenever they began to act up. I worried a lot about the old aches and pains coming back, but so far, I’ve been pleasantly surprised to find that’s not been the case at all.

I was always under the impression that with my Ehlers-Danlos Syndrome, I would probably always need to blast all over to get the relief I had started enjoying from blasting and that seemed to be the general consensus in my blasting group. However, after 8 months of doing little more than touch ups, I haven’t been able to make myself return to doing a regular blasting routine. That’s because it simply hasn’t been necessary. The constant pain and other symptoms I experienced before I began blasting are gone and for the most part, it hasn’t come back. My neck is in the best shape it’s been in for decades. My head pain is at an all time low. My joints, while still subluxing frequently during MCAS flares, rarely ever cause me problems the remainder of the time, and my fibromyalgia seems to be all but non-existent.

Of course there are exceptions to every rule. I still develop tension headaches if I don’t do my head and jaw area on occasion, so I do it a couple of times a month. My hands also begin to get sore and cramp up if I don’t do those every month or so. Still this is a far cry from the daily treatments I was doing on both of these areas, and I look at it like this; if there’s a mechanical problem causing the fascia to pull some of the load, then you’re going to have problems with fascia. Obviously, I have problems in these areas (occipital neuralgia, TMJD and carpal tunnel to be exact).

The faceblaster also works great when healing injuries, so I do plenty of that. I’ve used it to treat a myofascial adhesion I developed from a round of tendonitis in my elbow. It works great to help alleviate some myofascial aggravation from subluxations, which is coming in very handy during my MCAS flare. So, while I was once using it to strip away years of damage accumulated in my fascia, I’m now using it to prevent that build up from happening again and keeping the fascia in good working order. It doesn’t require that I do it all the time or that I even do a full body treatment, just that I do the area of contention and whatever structures that are closely related to it. I occasionally pull out the full-sized blaster if I’ve overdone it in therapy, as it works great to get some of the soreness out of my muscles and helps me to stretch.

I wanted to share this information in case there are those who have been putting off trying it for fear that it will become a lifetime wellness commitment or fear that it might make things worse somewhere down the line. I didn’t really mean to test this theory starting out, but it’s useful knowledge nonetheless. Be forewarned though, if your fascia is in bad shape to begin with it can take time and energy to get them in decent shape before you can hit this maintenance phase and be successful with it. I worked hard for over a year and a half to get mine in good working order. Once that work was done, I was able to relax about it and concentrate on other aspects of my wellness, mostly using the faceblaster as a tool for prevention rather than one of active healing.

On reflecting over my methods of the last eight months, I’ve come to think of it as the “maintenance phase.” How do you know when you’re ready for the maintenance phase? I would say that you’re ready when you’re no longer experiencing persistent symptoms and can easily take at least a month long break from blasting without experiencing any negative side effects from doing so. I realize now that it had been losing priority for me for a while and I probably should have seen that as a sign that I needed to adjust how often I was blasting, as I always recommend allowing your symptoms to guide your blasting practice. This can sometimes be tricky when dealing with illness that flare, so understanding your baseline outside of flares is key.

If you’re new to fasciablasting and need a few tips on how to get started, check out some of my other articles on the subject: