We’ve also started a private group for spoonies and zebras with complex PTSD, but you must have both PTSD and a spoonie condition to join. I’ve built this group around the knowledge and PTSD complicates chronic illness and vice versa. It’s about how they interplay, as well as doing the work necessary for recovery. If you’re interested in doing group support and recovery work, drop us an email or pm on facebook. This is an invitation only group.
We try to offer something unique on each of these sites, so following us in multiple places is beneficial in most cases. Following us on social media also helps us to gain more followers and in turn, help more people! Please follow us on any sites you use. As always, thanks for your support!
This is me and Mr. Lestrange (if I’m Capricious, let’s call him Steadfast Lestrange), showing off our rainbow colors at Cincinnati Pride yesterday. Yes, that’s me, without a mask, outdoors in June! How did I get away with that? Why, with careful planning, some success and a little failure, of course.
Sexuality and Gender as a Spectrum
First, I don’t know that I’ve mentioned before that I’m pansexual or if I have it’s been as a footnote so I’d like to take a moment to talk about it. In case you aren’t familiar with it, pansexuals are attracted to spirit over body. Pansexuals can be attracted to cisgender people, trans people and everything in between, which is what sets us apart from bisexuals. It doesn’t make us better, just different. When I first came out, I don’t even think the term existed, but I adopted it as soon as it did. It was like finally finding skin that fit just right.
I’m by no means ashamed or anything. It’s quite the opposite, as I’m always more than happy to let my freak flag fly (and yes, unlike Nola Darling, freak is a term with which I’m happy to label myself, but you aren’t allowed to direct it toward me if you’re going to hurl it like an insult, much like the word dyke). I came out of the closet so long ago that I sometimes forget just how important queer activism still is. I’ve also felt ostracized by the queer (primarily lesbian) community for falling in love with a cisgender pansexual man and participating in what appears to be a heteronormative relationship to the casual outside observer. Naturally, I found myself distanced from the community for that reason. There’s a long, tired history of people at either end of Kinsey’s scale for sexual attraction/orientation judging those of us whose attractions fall somewhere in the middle and largely unless we’re with same sex and/or gender queer/trans people, historically we’ve gotten shunned by the L and G in the alphabet soup of sexuality. While trans people have also had a terribly difficult time of gaining acceptance on both sides, I feel like they’ve made more headway in recent years and somehow it’s those of us who straddle the entire spectrum that will be fighting on the last frontiers of acceptance, but I’ll spare you on the college lecture of why that is. I have a degree in Women, gender and sexuality studies. I could go on forever.
When you have the zebra trifecta and have largely been ostracized by the community for which you’d be doing activism, you don’t really feel inclined to use up your precious spoons to go and march for a place at the table in it. Therefore, it’s been 14 years since I’ve been to a pride event. I’m happy to report that 14 years has brought about some change and much more inclusion for everyone on the spectrum and I have to think millenials have everything to do with that, so bless you millenials and bless you to the Xers who mostly raised them. We felt included and have the merch to prove it, lol.
Preparing to go to Pride
When we began talking about going to Pride, I started watching the weather and the pollen reports. I didn’t want to go if I had to wear a mask and it was too hot outside. We caught a big break, where it rained in the morning, bringing pollen counts way down and providing much cooler temps (high of 77f). We immediately ruled out marching in the parade, as despite the fact that I’m now doing 90 minute workouts and have much more energy, POTS can still make staying on my feet for long periods a little tricky. Standing around and waiting is the worst and you’d be surprised how much you end up doing that at a “march.”
So with that in mind, we opted to go later in the day to enjoy the festival activities. I wore loose, comfortable clothing that covered most of me and my compression socks. Attire is very important when you’re a Masto-Zebra-POTSie. I need to keep most of my skin covered because I am intolerant to UV light. I need to try to stay cool because I have heat intolerance and loose clothing helps a bit, and I need to keep my blood volume up, so the compression socks help. I also wore well-fitting, supportive athletic shoes, which of course are always a must for every zebra. Like most, I have very flexible feet, both of my arches are collapsing, I have morton’s toes, weak ankles that sometimes collapse and there are dozens of tiny bones in your feet that are all too happy to sublux at any given moment.
I made sure my pill case was filled not only with my regular daily meds, but also rescue meds, CBD oil and advil, all of which I ended up relying on heavily. I also took my mask, sunglasses, oral rehydration salts I could add to water if I needed, eye drops and nasal spray. Boy was I glad to have them all.
When I woke up that morning, I was already reacting to something. I ran out of herb, which I usually vape, so my husband picked me up some hemp derived CBD oil on the fly to try to help get me through. Since I started taking it the night before, we suspect it had something in it that was making me react. Maybe I can’t tolerate hemp oil, who knows. I woke up with dermatagraphia and some flushing. I also found the CBD oil, while effective for pain relief, did little to nothing to help me sleep, so I got a whopping 4.5 hours of sleep the night before, too. The morning was bad for the tummy, too. Right after breakfast, I had to run for the bathroom and then again every 15 minutes or so. It was as if I’d drunk prep for a colonoscopy. This created a bit of anxiety about the odds of me lasting very long.
I took more CBD oil in the morning (I didn’t realize it was probably the oil until later in the day) so by the time we got downtown, I was a pretty good ball of itch and had to get around 75 mg of benedryl in me before I really got things calmed down.
Attending the Festival
As I’ve mentioned before, we live in the northern most part of Kentucky which borders the Ohio River with Cincinnati just on the other side. As the crow flies, downtown is 11 miles from our house, but they seem like two different worlds. We knew parking would be a nightmare right around the event with both Pride and a Reds game and every other regular Saturday activity competing and pricing was as high as $60 to park. We opted to do what smart Kentuckians do and parked on the Kentucky side in Newport for $5, then took the Purple People Bridge across to Cincinnati, which is a half mile walk.
And how about these?
Got them at the festival!
My first problematic encounter came in the parking garage at the Levee. There was a woman at the elevators who had absolutely bathed in her perfume and I literally ran away from her so I could strap my mask on my face before I went back. Crossing over the bridge was more of the same and I was quickly reminded how much queer boys love their cologne. We had to stop at the beginning of our bridge trek because of tachycardia, but once I got my heart back to normal, it behaved pretty well the remainder of the way.
By the time my Benadryl fully kicked in, I was actually doing pretty well. The pride festival is held in a large riverside park called Sawyer Point Park and Yeatman’s Cove. It probably spans around 2 miles in length. We walked it twice, browsing booths, eating and shopping. So long as I stuck to a reasonable pace, my heart stayed within regular limits. I only needed to sit down 3 or 4 times in the 5 hours (holy shit! 5 hours!!!) we were there.
I ate things I’m not supposed to eat. We split a pretzel, which of course has yeast, but at least I skipped the cheese and/or mustard to go with it. We had gyros with both tomato and tzatziki and we bought a funnel cake, but we were both so worried about what we were doing to ourselves that we just picked at it a little and threw it away.
Around 3.5 hours in, my Morton’s toe on my left foot started screaming. I don’t know if something subluxed or it was just cramping or what, but I developed a pretty good limp and was grateful to finally find a curb where I could stretch it out.
By the time we decided to leave, we were both pretty exhausted, but I was determined to walk the bridge back instead of ordering an Uber. Again, I was hit with tachycardia at the beginning of the bridge, this time because of the incline, and we chose to sit at some conveniently located benches. We made it the rest of the way without too many problems.
The Gift that Keeps on Giving
As is true of most zebras, what we get away with first will usually come back to haunt us later. I wasn’t at all surprised how my body turned on me last night, despite keeping up all the meds. I was sitting there watching TV and got hit with a sudden wave of nausea. I went running for the bathroom and realized I could barely walk, so severe had the pain in my foot grown. My neck turned beet red when my husband showed no signs whatsoever of having been out all day. Mental note, next time wear a sun hat, even if it looks stupid.
Apparently, I spent so much time scratching in my sleep that my nails were worn down and reshaped when I woke up this morning! Some other lovely morning side effects included eyes that were a little itchy and hands and feet that look like sausages along with some bone pain, joint pain, dizziness, and a little dermatographia. All told, I’m really in pretty decent shape. I mean, really I would have loved to wake up in this good of shape anytime over the previous ten years.
Breaking It All Down
This level of success can only mean the quercetin complex and other meds I’m taking are doing a bang up job of healing my body and I’m finally learning how to proactively plan and control my MCAS (a post is in the works on these supplements). Compare it to last year’s attempt to enjoy a festival in this blog post, When Oompa Loompa Sat on a Hill (it’s amazing to consider how naive I was at the time. I didn’t even realize most of those symptoms had anything to do with MCAS). Had I attempted any such thing even two months ago, I’d have lasted a third of the time and I’d still be lying in bed right now with terrible head pain and running to the bathroom every 30 minutes debating which end to present to the toilet first. My pain levels would be completely out of control, I probably would have woken with something out of joint, my eyes glued shut and would have had to deal with an anaphylactic reaction at some point during the night. This, frankly is a real treat.
Would I want to treat my body like this every day? Absolutely not, but it’s nice to know that I don’t have to be a prisoner in my own home 365 days a year and can get away with the occasional special day out without restriction. I know within a few days, I’ll be fully recovered from this rather than weeks. That means it won’t cost me a week or two of strengthening and exercise, setting me back months. Hopefully it won’t be paying too long term of a price with my tummy. I regret nothing at this point.
We all have to find our balance and decide for ourselves what’s acceptable and what we’re willing to risk for some temporary freedom; a day to do what we really want. What price is too high to pay for a little freedom? At this level, the trade off is quite worth it to me, while for some it may not be. Inside or outside of the community, it’s not our place to judge what’s right for each other, just like in the LGBTQIPG community. It’s our job to support each other and be good to one another, at least if you want to have friends and have those things yourself. As humans, we are critical by nature, we make comparisons automatically, a trait which helps to keep us safe. Acting on those critiques, speaking rudely against other’s decisions, those are things we can resist. Opting instead to be sympathetic and supportive when we screw up and bite off more than we can chew and cheering us on when we succeed; those are choices we can all easily make.
I’m proud to announce The Zebra Pit has been nominated for a Liebster Award! Many thanks to Carole Scrafton at FibroFlutters for the nomination! Unfortunately, it’s taken me a bit longer to compile all of the information I needed to accept the award and nominate others, but that in no way diminishes the excitement and honor we feel about being nominated. We will proudly display the Liebster Award banner on our about page. There are a few simple rules to follow when receiving a Liebster Award, so I’ll try to cover everything here.
Here are the rules:
Acknowledge the blog who nominated you
Answer the 11 questions your nominator asked
Nominate 11 other bloggers
Ask them 11 questions
Let them know you have nominated them
11 Questioned Answered:
What country do you currently live in and is it where you were born? I was born and reside in the US. I was born and raised in greater Cincinnati, and though I’ve lived in a number of other cities in the US, I returned to the area around 15 years ago for grad school and decided to stay.
How long have you been writing/blogging? I’ve been writing most of my life and started my first blog all the way back in 1996. I’ve had many blogs since on a variety of topics, including literature, sexuality, cooking, and health and wellness.
What is the subject matter of your blog? My blog focuses on health, wellness and nutrition for spoonies.
How often do you post? As often as I can without compromising my own health.
Do you just blog about your own health, or do you share other stories by other bloggers? I tend to choose topics that are in line with my own health concerns, but do share things from other bloggers that I find helpful or resonate with me.
What are your main interests when you think about research? Research which helps to shed light on the root causes of my conditions and of course research on effective therapies.
If you could help with research, would you? what would you like to do? Yes and no. I’m currently taking part in a research study for medication overuse and how it relates to migraines and I’m all for taking part in studies that might help my illness be better understood. I am not willing to test out new drugs, however. I have a hard enough time trusting those already approved by the FDA.
When blogging do you share up to date research news relevant to your health conditions, or interests if not writing in connection to chronic illness & ilk? All the time. If I don’t share them directly on my blog, I share them with followers on my facebook or twitter feeds.
What are your favourite distractions / hobbies? Television seems to be my favorite distraction of late, though I’m trying to change that and spend a little more time on other things. I really love to read, but mostly have to listen to audiobooks because too much reading brings on migraines. I also love to paint and write, but can only do those sparingly, as well. If I had the energy, I’d definitely be hitting the hiking trails on a regular basis.
If you could select one health problem from your list of health conditions to delete permanently what would it be? Easy. Ehlers-Danlos Syndrome (EDS).
How do you perceive that your life would improve once you’d deleted your chosen health problem? I chose EDS because as I understand it, faulty collagen is the root of all of my problems. It would mean I would never have developed debilitating POTS or migraines. I wouldn’t have a Mast Cell condition or gastroparesis or a deteriorating spine or chronic fatigue or fibromyalgia or… you get the picture.
What do you miss the most that you’ve lost to chronic illness?
What’s one of the most valuable life lessons chronic illness has taught you?
If you could offer only one piece of advice to someone with your primary condition, what would it be?
If you could raise a million dollars for any cause, which cause would you choose?
What change/medication/therapy do you feel has been most beneficial to your health?
If you were granted one week without any interference from your condition (being magically and completely fit and healthy), what would you do with it?
What are your favorite hobbies or ways to spend your free time now?
Who or what helps to motivate and inspire you?
Now it is up to me to contact the bloggers I have nominated and if they choose, they can accept and nominate their own 11 bloggers for the Liebster Award. I had a lot of fun choosing blogs and got to know a few new sites in the process! Thanks again for the nomination, Carol!
“Is it safe to get x vaccine if I have y disorder?” I hear this question asked all the time in support groups, on twitter and blog posts by spoonies. There are a lot of questions and confusion these days around the safety of vaccinations for children, elders and people with chronic illness or auto-immune disease. How do we determine what’s safe when our own doctors insist they’re safe yet courts are ruling that contaminants in vaccines are in fact triggering latent genes for conditions such as autism, 1, 2, 3 based on studies which confirm that vaccination causes mercury toxicity which can irreparably harm our mitochondria?
I don’t want to come across as sounding anti-vaxx. Vaccinations can be an incredibly good thing. They were responsible for eradicating Polio, after all and are meant to protect us from some pretty scary stuff. We need vaccines.
But not everything about vaccines is good. What bothers me is what comes along with the vaccine. They tend to be packed with things that aren’t good for the average person, but when it comes to the spoonie population can be downright disastrous. Vaccinations contain highly toxic metals and substances such as mercury, aluminum, lead, cadmium, formaldehyde, and thimerasol and often contain common allergens such as dairy and MSG, 4. I could break down what each of these does to a body, but let’s just say that most of these compounds do not simply process through the body without harm. They are toxic to our systems and can do any number of things to our bodies, including contribute to serious conditions such as Alzheimer’s disease.
I had a TDap vaccine several years ago that resulted in a high fever, chills, vomiting, swelling and heat at the site of the injection, all over soreness in my arm and a rash. Recently another member of my local zebra chapter reported the same symptoms with a different vaccine, only her arm was so severely affected that she couldn’t move it for several days. It took both of us weeks before we felt back to our normal selves.
Conversely, I’ve taken flu vaccines since with none of these side effects. Why? More than likely, the vaccines had different components, so I experienced a different reaction. But I’m wary of vaccines now and I’m certainly not the only one. I’ve done a lot of research since and I believe that the use of heavy metals and common allergens like dairy have to be removed from vaccines in order to make them safe for all of us.
This article discusses the history of vaccination problems among immune compromised persons and while it seems to contradict itself at every turn, it seems clear there is an issue. One which is complex, multifaceted and ongoing.
Of course this is a topic of hot debate. It’s especially important when governments and schools are making laws that force people to vaccinate their children for the “common good, 1.” I could not in good conscience vaccinate my child if it meant also giving them the mercury toxicity that could have led to my stepson’s autism. Luckily, if you want to call it luck, I won’t be having to make that choice.
I do have to face that choice for myself, though and will have to more and more as doctors push on me various vaccines recommended for aging and ailing populations. In order to get ready for those choices, I try to educate myself with the facts as much as possible and pressure manufacturers and law makers to force positive change to these much needed vaccines.
To that end, I’ve signed up to watch a documentary series on The Truth About Vaccines, beginning August 17th. I encourage you all to watch as well so you too can make the best, most well-informed decisions you can to stay as healthy as possible for as long as you may!
Community support can be a wonderful thing, until you start letting it stress you out, use up all of your precious cognitive resources, and practice avoidance by allowing helping others to distract you just a little too much from your own life.
Now I’m so fatigued I’m having difficulty thinking clearly, my pain levels are through the roof, what I now think is gastroparesis and definitely not IBS has begun its full assault and I still have to deal with the fact that I have probably been misdiagnosed, or have another comorbid dx with a not so very cheery outcome.
I have more tests Tuesday, but hope to be recovered enough to face the music and share all soon, though I do have to say all these changes still have me questioning the return on investment of this blog. I’m not sure it’s worth it to me or anyone else right now to continue.