I have been using my Silver Ring Splints for over 5 years now. This year, I had to add 8 more to my collection as my hands continue to degrade. I deeply appreciate their support as I have reached a point where I cannot write without them due to my easily dislocating thumb MCP joint. Holding a pen has become quite challenging. Over the past 5+ years, I have adapted to wearing them every day at work, where I often encounter people who comment, ask, or just stare awkwardly. I believed I had successfully developed confidence in using these mobility aids. I have become skilled at explaining to strangers that they are not mere jewelry, and I stand my ground when faced with inappropriate comments, always maintaining a respectful approach. However, I was invited to help moderate a wildlife identification group for the Carolina’s on Facebook…

I already admin a local wildlife group and have been a part of a global group called Antman’s Hill, so the group themselves aren’t an issue. I’ve become a big advocate for helping people appreciate insect and arachnid wildlife, so I’m quite used to confrontation. The local group, most have known me for a number of years so they’re used to me. The global group? I don’t post a lot of my own photos because they’re already insect based. This new group though? We’ve got tons of people that will speak for all sorts of other wildlife and tons of folks that will post birds, deer, coyote, otters, and the more ‘loved by most people’ kind of photos. So, to the surprise of nobody that knows me in person, I posted a photo of one of me handling one of my spider friends.

Most of the comments were a mix of exactly what I am used to. Appreciation, curiosity, shock, and a sprinkling of fear and hate that had to have active moderation. What I wasn’t expecting (and I really should have) was a lot of comments making note of my splints. For all the work that I’ve done on the subject, this actually threw me. I’ll share just a few of them. None of them were negative in any way. There were a few EDSers that called me out, which to be clear isn’t an issue it is just a note. There was someone that informed a commenter that my “jewelry” was medical.

Let me be very, very clear in saying that none of this is actually a problem. Nobody commenting was in the wrong.

I found myself in an internal conflict. Should make a point to take off my splints before taking any photos that I’m going to share? Was I subconsciously looking for attention? Should I keep my EDS out of wildlife groups?

I sat for a while with this. I didn’t want to get the perspective of others quite yet, I wanted to make sure my thoughts and stance were my own. Before I share the conclusions I came to, I want to make sure that just because this is where I came settle, it is in no way saying this is the stance I feel others need or should adopt. This is where I personally am in my life and my journey. You are not less if you do not hold the same views or perspective as me. That being said….

After long consideration, I have realized that what I was questioning, was internalized ableism. Ableism, is discrimination in favor of able-bodied people. Internalized Ableism, is where your own actions and thoughts try and put able-bodied expectations to yourself at a subconscious level. My rings aren’t jewelry. They’re mobility aids. If I needed a wheelchair, it would be like considering taking photos without it so people didn’t see it and make comments. Hide anything that brings attention to the fact I’m disabled. It made my heart hurt a bit. Realizing that I was considering making a point to hide something that is a part of who I am. My EDS isn’t something I have chosen to have. My splints aren’t something I wear for attention, they’re something I wear so I can do things that feed the light in my soul. I can still choose whether or not I have the spoons to interact with those comments in the moment, but I am not going to remove something that helps me live my life with joy for the sake of appearing more normal. So I will continue to post cool pictures I get of our tiny wildlife friends and remind myself that a goal of mine is to normalize having to use mobility aids, speak about chronic illness, and normalize being disabled in everyday life. It’s also a very deep reminder that no matter the work we do, it’s absolutely normal and okay to still discover bits of ableism hiding in our subconscious. It’s all about what we do about it when we discover it.

Again, I don’t hold expectations of anyone else to take my stance and run with it. It is absolutely valid if anyone wants to take off their splints or hide other mobility aids for whatever reasons. We are all in different points in our journeys and our paths are our own. My chosen stance is in no way a judgement on anyone who stands otherwise. Find your joy. Nourish your spirit.

Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles
And by opposing end them. To die—to sleep,
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to: ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep, perchance to dream—ay, there’s the rub:
For in that sleep of death what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause—there’s the respect
That makes calamity of so long life.
For who would bear the whips and scorns of time,
Th’oppressor’s wrong, the proud man’s contumely,
The pangs of dispriz’d love, the law’s delay,
The insolence of office, and the spurns
That patient merit of th’unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscovere’d country, from whose bourn
No traveller returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience doth make cowards of us all,
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry
And lose the name of action.

Hamlet, spoken by Hamlet

While Hamlet is speaking of a more permanent death, what I’m going to write on today is a smaller kind of death that is related to that of significant change that is not always something we choose to take on. The tiny deaths that happen every time a new part of us gives out and forces us to adapt our way of life.

For me, I’ve recently been facing this with my ability to create art. While I write in my spare time, I live for my art. It’s partly how I manage having EDS and its various complications. It’s how I grieve. It’s how I process some of my psychological trauma. It’s how I distract myself when pain is constant. It’s how I show love. It’s how I survive. I do so many different types of art that I can’t keep track anymore.

And now, EDS threatens again to take it from me. I faced this before just a few years ago. The connective tissue in my hands have always been extremely hypermobile, but my left hand had suddenly developed exceptional pain in my thumb. I couldn’t knead clay. I couldn’t bead. I couldn’t even wash my hair efficiently. Thankfully, I had just started seeing a rheumatologist that was a bulldog against my insurance and got me a full set of swan necks and a thumb plate for my MCP joint that started to fully dislocate with minimal effort.

I wrote a full other post about my ring splints to talk about it before, but it was done long after the period of adaptation. I was able to type without taking breaks to cry and scream how I hated the feeling. I had already started beading with regularity at that point, rather than throwing a piece only a few rows in because I couldn’t get the needle to do what I wanted. I was writing almost with the elegance I expected of myself, not the chicken scratch that I fought to get out with the new splints. I did this intentionally because I wanted to show that it’s totally worth it! It was worth all the screaming and crying over the difficulties and discomfort.

But, now I’m facing it again. My right hand…..my dominant hand….has betrayed me. The MCP freely dislocates and is constantly in significant pain. My hand that holds the paintbrushes. The hand that writes. The hand that holds the carving tools. That hand is now unable to hold anything without shooting pain.

The hurdle at hand (mind the pun) is whether I want to put in the effort to adapt yet again. It may seem to the reader, that this is an obvious thing. If art is life, then of course I would choose to adapt! While, yes, I’ve ordered a thumb splint…I assure you that it was not an easy decision or a simple and pleasant experience to decide this. It’s the turmoil of facing such a thing that I wanted to shine a light on.

The first aspect of this is the gut punch that is yet another failure of the body caused by Ehlers-Danlos. I’m angry. I’m short tempered. I’m heartbroken. I’m grieving. Whether or not I adapt, there’s a grieving process that comes with the small death of yet another thing I’ve gotten comfortable with having in my life that will cause significant change no matter what I choose to do. It happens with everybody and every body. Most experience it with old age, but some of us experience it younger than we ever should for various reasons. This only adds to the rage and grief. Angry at people who get to experience a full life of enjoying things they love without such challenges. Angry at people that have their mobility and abilities cut short from their own obvious poor choices because it feels like they’re reckless as a toddler. Angry at people with acute and curable hurdles because they can go back to normal. All of this is a lot of anger to process. I’m grateful to my sister, and I’ll take a moment to push her books by saying you should look up Kahaula on Amazon, for all of her help during this time to keep me grounded as well as helping with a safe space to scream without judgement.

As the grieving is processing, there’s the decision of whether to adapt or to let go. To be, or not to be, if we go back to the quote I used above. Because each option carries with it emotional baggage. Neither is the right answer or the wrong answer. They just are. And this is something of a problem in the chronic illness community as well. The overwhelming battle between saying “you’re not your productivity” while pushing “but don’t give up on things you like to do” to anyone facing such a problem. It’s a bit hypocritical and I don’t think we acknowledge that quite enough.

It’s not as simple as forcing yourself to be cheerful and pushing onward. It’s evaluating your own mental health and deciding what’s best for you in the long run. Because sometimes, giving up something you love, is actually healthier than trying to force yourself into adaptations because you are pressured into not giving up. Only you can make that decision for yourself, and that’s important. This is also a great point to mention that a therapist can be an important sounding board for such things.

For example, with my art, I know the new splint isn’t going to be comfortable, no matter how skilled the splint maker is and how perfect it fits. I know it took me several months to stop shaking my hands to stim from the discomfort last time. I know I’m going to absolutely hate the process of adapting because it’s learning skills all over again. It’s not a pretty process. It’s not like the inspirational video posts you see where someone disabled just tried hard, had a few frustrated moments, but pushed past it with joy and everyone was celebrating YAY! It’s trying.

The other side of this is knowing that it’s uncertain how long any adaptations I get used to will actually last. I **JUST** got back to painting my feathers even semi-regularly. Right after I fully adapt, I’ve got to go through the cycle **AGAIN**. It’s one more thing on top of the never ending accumulating mountain of things I’ve got to manage with this damned disorder and the constant malfunctions it causes.

It would be easier to just let it go. It would be less stress on me and my slowly falling apart hand. It would be less stress on those around me as I go through the emotional turmoil of the process to adapt. It would be more certain than trying only to possibly be let down as soon as I fine tune my adaptation. After all, I’m not my productivity. I’m not less if I come to the point that I can’t do my art. I’ll be sad, and I’ll grieve, and I’ll be angry…but I’ll eventually put my energy toward something else to keep my heart and soul occupied.

Is trying to keep doing art only speeding the decline of my hands? Am I creating a path to permanent disability that’s paved with dried paint and wood shavings? Could I extend the life of my hands by giving up most of my art? And could I live with myself if that’s what I chose to do?

There isn’t a right answer, only what’s right for me. Just as when you face your own hurdles, there’s only what’s right for you. I took a long time contemplating all the angles before deciding what was in my best interest. I can’t see surviving without my art at this stage in my life. As soon as I came to be aware of that, I made arrangements to order a splint to suit my failed MCP joint. And I’ll take all the rage and spite and fury and channel it into moving forward

I’ll cry and scream and probably throw a few innocent paint brushes. I’ll judge myself much too harshly for not adapting faster and producing the quality I expect from myself. I’ll get angry at the loved ones that remind me to be kind to myself on this journey. I’ll curse the gods and the body I’m in. I’ll do this all in spite of how much I’ll try not to. I’ll mask the myriad of emotions like the ocean hides Her rip currents until the wave becomes too much and crashes over. And I will do all of this not because I want to be an inspiration for everyone to push through and adapt no matter what. I will do this for one reason, and one reason only.

Because it’s what I’ve decided was important to ME.

Not to family that wants to see me continue. Not to people who want to commission me. Not to doctors that have their opinions on both sides. Not to people I work with that think I can adapt to almost anything. Not to my partners that both know what being able to create means to me. Not for other people to utilize for their own motivational needs.

For me.

That is what I want you to get out of this. Adapting is fucking difficult. It’s not a Hallmark movie with one sad day and a perpetual cheer squad. It’s horrible and I refuse to sugar coat it. It has potential for amazing things and I know that I’ll also cry tears of joy when I’m able to paint to my own standards again. I know the pieces I create out of all that anger and spite will be incredibly emotional statements that I can look back on. For now, it’s worth all of the struggles I’ll face in order to get there. While that makes it easier…it doesn’t make it EASY…and that is a significant differentiation.

It also brings me a great comfort that when I choose to let my artistic side rest for good, that it will be on my own terms and my own choice. I’ll know that I tried, and I know that I did everything I possibly could to extend the ability of my hands by doing things like wearing protective gear and mobility splints. So when that time does come? I don’t think I’ll ever be ready, but I’ll know it’s time. I won’t be a failure because I’m not somehow pushing through to find a way, just like I wouldn’t be failing if that was my choice right now. I’ll have the same comfort then, as I do now.

That the choice I made was mine, and for me alone.

I wish all of you the strength to make all of those hard choices that EDS, or any other hurdle, forces you to face for you, and you alone. Wishing it won’t hurt is futile, so instead, I’ll just wish you find peace in it and live your best life.

Someone I care about shared a quote. My knee-jerk reaction to this was to think that it’s absolutely beautiful and brought me quite a bit of joy. The quote was from the book Beautiful Lies, by Lisa Unger and said, “When you start to know someone, all their physical characteristics start to disappear. You begin to dwell in their energy, recognize the scent of their skin. You see only the essence of the person, not the shell. That’s why you can’t fall in love with beauty. You can lust after it, be infatuated by it, want to own it. You can love it with your eyes and your body but not your heart. And that’s why when you really connect with a person’s inner self, any physical imperfections disappear, become irrelevant.”

And still…I find this to be a beautiful statement. It’s something that a partner of mine discussed on multiple occasions, the most significant of which was when I was first facing ankle surgery and the diagnosis of Ehlers-Danlos was becoming horrifyingly inescapable. I was scared. Scared that I would be a burden to those I loved. That all they would see is my inability to do things with them. My hurdles. My splints. My crutches. My pain. That’s all I would become, a reminder of ugly things in life and they’d stop wanting to be around me because of it. He was very gentle as he spoke to me and asked me to elaborate. He listened patiently. Though my sobs and my long-winded rambling. Then, with a smirk, he nodded and said, “Ah. I see. So, what you’re saying, is that if I fall off a roof and get hurt that you’ll stop loving me?” I was appalled that he would say such a thing and told him so! He then put on a very confused expression and pointed out that was exactly what I expected everyone else to do, “Are you saying your better than me?”, and the smirk returned. The conversation took turn and we discussed that I need to maybe accept that I’m loved in the same way I love others. That’s it’s more than looks, or what they can do for me. It’s who they are as a whole.

So when a friend posted this quote to her social media…those memories came up and filled me with a love that is all encompassing and rooted deep in the soul. A reminder that what love means, isn’t your productivity or whether or not you’re sick. You intelligence and your skill doesn’t make you less or more worthy of love. Nor does having a degenerative disease make you less deserving of love. Because being human and sharing love is MUCH bigger than any of that.

But then…the thoughts took a turn…

I’ve written about difficult times growing up. How I put myself in therapy and had to digest the fact that I had treatment for cPTSD and not just depression. But all the acknowledgement and processing for all those years, and sometimes it still pops up out of nowhere. Memories strong enough that I can still see the whole scene play out and hear it play in my head word for word. Having your mother tell you that your bra size was too big, which means you were fat and needed to watch what you eat…I was still in Jr. High and wasn’t even over 100lbs. I just have a big chest. Or having her pinch your belly skin when she walks by and reminding you that if you were fit, she wouldn’t be able to do that. Nitpicking about how my hair was cut. What clothes I liked. How I sat. It was all superficial nonsense.

Which, some of this can be normal. Parents are supposed to help teach their kids how to be functional adults. So no, your parents telling you that you’re not going to a family holiday dinner dressed like you’re going to a GWAR concert isn’t them being abusive. But it’s also supposed to come with praise and acknowledgement of good things. An encouragement of passions. If all they do is nitpick on your outward appearance and superficial traits while ignoring all of the beautiful, unique, and incredibly important traits about you that make you the fantastic person that you are? This is probably something you need to tear apart and inspect a bit. Parents are human too, and sometimes personalities just clash. But sometimes, unfortunately, they’re just not capable of providing actual love. Maybe they’re hurting, maybe they need therapy, maybe they’re just mentally unstable. What matters there is you take a healthy look at whether they’ve been supportive and maybe it just looks different than you’d prefer…or…whether they’re honestly not and you need to reach out to get yourself the help and support that you deserve. No matter how old you are or whether you parents are even alive or not.

The quote then hurt. It was a reminder of people that were supposed to be showing me that love as a child and what I didn’t get behind closed doors. Feelings of jealousy for people who grew up in families that loved their kiddos. People with kids who share how proud they are of them and you can tell by the interaction that they mean it honestly, and not just something they are sharing to get praise for what a good parent they must be.

Then…the thoughts got darker

Because the quote can also be used as a tool of manipulation. This is even more common if you grew up without experiencing an environment to grow up with in which you experienced love. If you don’t know what real love looks like? It’s awfully hard to recognize it from toxic relationships.

Every relationship has hard times. No matter how much love is involved, everyone gets stressed. Everyone has a breaking point. Everyone has a line in the sand. And everyone is entitled to their limits and taking steps to ensure their own mental and physical health. But abusive situations often contain a lot of guilt trips and passive aggressive statements surrounding the idea behind this quote.

If you REALLY loved me, you’d understand. If you REALLY loved me, you’d give me another chance. If you REALLY loved me……

I lived in a relationship like that for too long.

Yes, love means that you absolutely love the person despite their physical state, despite their mental illness, despite their trauma, despite their hurdles. Because the person is so much bigger and so much more than that alone. HOWEVER!!! Love doesn’t mean that you have to put up with being abused because they’re not putting in the work with their own issues to not hurt you. You can love them, and still walk away because you are important enough to not be a verbal or literal punching bag. Love isn’t being expected to fix their problems by constantly modifying your behavior so they don’t have to. Love isn’t being expected to constantly allow your boundaries to be crossed and disrespected.

Have open and honest discussions about any problems. Walk away when you feel you want to scream at each other. Find compromises when you can and work together on other options when you can’t. But do not bully the other person for having boundaries and do not allow yourself to be made to feel less human because you are sticking to yours.

I’m keenly aware that this is a difficult subject amongst the zebras. There’s so many in the discussion groups that I see where their partners up and leave because it just got too much for them. I’m not in their relationships, so I’m in no spot to even speculate on what happened or if there were other things that could have been done. I empathize with them because that’s an incredible pain, even if it happens to be mutual. I illustrated that fear in the very beginning of this post.

And I wanted to be angry about the quote. To make corrections and say that’s not always the case and how that can be a bad thing too. To warn people not to post things like that.

And the more positive turn that I promised…

Despite all of this, and some of the darker more intimate aspects of this thought process that I refrained from the elaboration of…I came back to that initial feeling I had about this whole quote.

I sat with all of these thoughts for a few days. I let all of the memories pass through, gave them their space, and “talked” to them. At risk of sounding like I’m anthropomorphizing them, the two sides kind of argued in my head. One was screaming that the post was dangerous and full of misinformation, while the other just kind of sat and softly smiled…with love. Simply existed, full of the love I’ve experienced thus far.

One of the things my therapist and I have worked on over our time together, was that if you didn’t have the love growing up? Give it to yourself. Be that source of love for yourself. Get help if you are incapable of doing that, because all of you are worthy of feeling that love. Doesn’t matter if you’re healthy or a zebra that’s a constant medical train wreck.

You are worthy of love.

You deserve love.

You can experience love.

Love doesn’t have to be happiness all the time. It doesn’t mean there will never be arguments. It doesn’t mean there will never be pain. It doesn’t mean hurt will be less in bad times. It doesn’t mean personal limits are negligible. But it means that you’re seen and appreciated for all that you are. That you can have the more painful discussions cushioned in that love you have for each other.

I didn’t have the “bad feeling” reaction to the quote because there’s actually something wrong with it. I had that reaction because the trauma part of my brain was trying to give me a warning to protect me. To remind me not to trust blindly just because *I* feel love towards someone. To remember that love is much bigger and much more significant than people who abuse the concept for their own purposes. To remember not to bleed my trauma over beautiful things, and instead sit and “talk” with it and divide the trauma response from the reality of the situation.

It’s also served as a personal reminder to how far I’ve come over the years. To remember that trauma isn’t ever fully gone, and that’s okay. It’s not a personal failing when it comes back, it’s an opportunity to reevaluate your beliefs and adjust or take action if necessary. To appreciate the love that I have in my life. And be grateful for the reminder that for as bad as things were…it’s learning to give that love to myself that opened up the ability to accept it from others. Though it can still be touch and go sometimes because brain chemicals are a pain in the ass, and it certainly doesn’t fix everything, it makes the world so much better to live in. Give the love you need to yourself, and it makes it easier to express it in healthy ways to others.

Because real life and human nature will always have boundaries. But love? Love doesn’t see the little things. It sees the most important things about ourselves and embraces the light that our soul creates. And feeling that, even if it’s just from yourself, is worth facing every hardship and every hurdle.

I wish all the love to each and every one of you.

However, I know several people who chose not to get vaccinated on a religious basis (and this was also confirmed by our Coyote in Zebra Clothing that heard it from several people in their area). They say that G*d will save them. My theory is that G*d taught humans to be smart enough to follow the damn SCIENCE! There’s even a past article about leaning on how leaning too much on faith has been harmful! As humanity has spent so much time learning how to save ourselves, why do some have to choose to help themselves live? Or at least not get sick?

We don’t question our use of seat belts anymore (the law was instituted when I was a kid, and now I feel horrible not wearing one 50 feet up the road). We don’t fight not smoking in a building. Stop signs and lights are laws of the road. These are public safety laws. Ones that have existed for quite a while and probably 99% of the people around follow these laws! Yes, there are always law-breakers, but for the laws above, it is rare here in the USA. But the choice not to get a vaccine or refusing to wear a mask is not helping public safety. In fact, you may be killing others. And these laws aren’t just to help protect your neighbor, they’re for those responders that are responsible for your care. The seatbelts so first responders didn’t have to have as many mangled bodies to scrape off the road, and the covid mandates were SUPPOSED to also be for our doctors and nurses to not be overwhelmed while put at constant risk. The lack of care for them in favor of this blatant selfishness is horrifying.

Vaccines are safe. While statements of vaccine injury are popping up in social media posts, the documented number of TRUE VACCINE INJURIES are one for ever million vaccines. One. And that come from a legal team that represents injured patients. 99.99% of the people alive in the USA have had a vaccine for Measles, Mumps, Rubella, Chicken Pox (or lived with it as I did in the 1980’s), typhoid, polio, and more. Smallpox was eradicated in nature thanks to vaccines. The COVID vaccines are new, but the disease is also new. Some are made using a newer technology – mRNA, others using existing technology. But let’s also take a moment to remember that the mRNA isn’t completely new, as this article from 2018 illustrates. The reasons we get a vaccine is not only for ourselves (protecting us from severe illness, death etc) but also to contribute to herd immunity in our world. Herd immunity saves lives. Most young children don’t have all of their shots, and depend upon others to have shots.

Herd immunity occurs when a large portion of a community (the herd) becomes immune to a disease, making the spread of disease from person to person unlikely. As a result, the whole community becomes protected — not just those who are immune. Often, a percentage of the population must be capable of getting a disease in order for it to spread. This is called a threshold proportion. If the proportion of the population that is immune to the disease is greater than this threshold, the spread of the disease will decline. This is known as the herd immunity threshold. What percentage of a community needs to be immune in order to achieve herd immunity? It varies from disease to disease. The more contagious a disease is, the greater the proportion of the population that needs to be immune to the disease to stop its spread. For example, the measles is a highly contagious illness. It’s estimated that 94% of the population must be immune to interrupt the chain of transmission.

https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/herd-immunity-and-coronavirus/art-20486808

More information about just the vaccines can be found here https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/mrna.html and here https://vaccines.procon.org/

As someone who has multiple health conditions, I am immune-challenged. For folks like many of us here, with mast cell issues, The Mast Cell Society has been giving constant updates for us about the safety. But I have friends who have little to no immune systems due to cancer, genetics and more. Some of these people are medically unable to get the vaccine under direct orders from their medical team. Those are the people I get my vaccines for. Yes, I get it for myself, but I also get it so that the people around me can be safer. I also choose to wear a mask around people inside a shop or anywhere I don’t know people. I do these things so that I can live a life that is full and happy – but I also do not want to be stupid. I am careful. I also don’t want to be the one who causes someone else’s death. And honestly, without the vaccine, you could be causing someone’s death or serious damage. Can you be okay with that? Truly okay with knowing that throwing your tantrum over individuality and sometimes utter nonsense science about “breathing only CO2” wearing a mask…could directly be how someone dies from contracting this disease?

I am just apoplectic at the lack of care for other people’s lives. How can you say that your religious beliefs in G*d will save you? Look at the bloody statistics!!! Look at the fact that more than half the ICU beds in the entire US are full with COVID cases. And those cases are from unvaccinated people! The CDC posts an update on data every day – I have posted it as the second link.

https://www.wired.com/story/the-dam-is-breaking-on-vaccine-mandates/?utm_source=pocket-newtab

https://covid.cdc.gov/covid-data-tracker/#county-view

Please think about the others around you. Important surgeries, such as ones for cancer, orthopedics, so called “elective” surgeries are being postponed all around the world. For someone with cancer, this means their treatment may be delayed months or years. And how scary is that? Because beds are not available because people are in the ICU with COVID!

I am not a religious person. I choose not to write G*d as I personally do not have a relationship with religion. I believe in something more like Buddhism where kindness is what people are to follow. I try to be kind in all things – this is the first time I truly can not be kind to people who refuse to vaccinate. I won’t interact with them, I won’t be around them, and I will still continue to mask around people I do not know.

So I started my meds Friday, like a good patient. By Sunday, I was running to the bathroom just to run my hands under cold water to stop feeling the itch. By Monday? I had an eruption of blisters on both hands to the point that made them completely unusable for work. As each day went on, more blister clusters would show up. Then they started to go down my arms, on my torso, and the top of my thighs. I could only sleep if I had ice packs on my hands to numb the itch. My PCP added Hydroxyzine to the mix, but the blisters kept coming. Is not only were the meds not stopping the massive flare, but I can only guess at what the trigger was this time so I don’t actually know what to avoid.

I haven’t eaten any new foods. It has been warmer than usual here, so maybe it was the high humidity and heat of outside? I got some plants from a friend a few days before the flare started, but nothing I’ve not handled before. Was it the soil? Was it the canna lilies? Was it the mexican petunias? Was it the papyrus? Was it just the fact I was sweating? Was it the pennywort I was pulling up? Did it have nothing to do with the new plants? Was it stress from being busier than normal at work? Was it one of the soaps we just got in at work? I honestly don’t know for sure. I’ve assumed it has to do with the gardening at this point because it is something I can act on. I can wear fabric gardening gloves and just choose not to actively participate in gardening….as much as that’s a heavy blow to my soul.

But That’s Not All Folks!

All of that is incredibly frustrating. But that’s not the whole of the story either. Because while this is going on, I don’t feel sick. I’m not running a fever. I’m not vomiting. I’m not delirious. I’m not overly tired (except for now I’m on Benadryl instead of the hydroxyzine, so I’ve only got moments of functionality in between doses).

Despite that, I can’t wash my hair on my own because the pressure on my hands sets the itching and pain in the blisters off. Showering at all is….uncomfortable. It’s got to be cool water, and I can’t stay in there long but it also is hard to hold anything to scrub with. Even getting dressed isn’t something I can do easily because bra’s are terrible to try and put on with hands that aren’t functioning well.

And of course stress makes any mast cell flare worse, so you’re not supposed to stress about all these things while the mast cells are attacking your own system FOR NO GOOD REASON.

Okay…so…the reason is that I’ve got Ehlers-Danlos and it often comes with Mast Cell Activation Syndrome and that means that the mast cells get over ambitious after being triggered and start attacking healthy tissue because that’s how auto-immune disorders work. I know this. But I still don’t consider that a GOOD reason for this nonsense.

Add to this mix that it’s difficult to find a doctor that is easy to get an appointment with during a flare AND knows about mast cell diseases? I am lucky to have friends that are knowledgeable as well as doctors that are willing to listen to me when I suggest something. But they aren’t specialists with mast cell issues, so as amazing as they are, they’re shooting in the dark a bit as well. The last time I had a massive flare like this? I was sent to a dermatologist that was supposed to be the top of her game. She looked at me and told me it was poison ivy and that she could tell I don’t have mast cell issues by looking at it, then proceeded to insult the rest of my team and tell me I just wanted to be special and needed to accept it was just run of the mill poison ivy. It wasn’t poison ivy. Despite the fact I react to the most benign things…I don’t react to poison ivy, and wasn’t around it anyway. Despite the fact I had a steroid injection that should have helped a poison ivy rash go down…and it did nothing. Despite the fact none of the blisters were weeping or anything like a poison ivy rash. Which just adds to the mountain of stress as you’re just trying to find some relief and get back to a life.

You Are Not Your Productivity

And this last one, is the fight against my own mind. That because I don’t feel like I’m on death’s door…I should be more productive. I should be able to work. That falling asleep because of taking Benadryl is somehow a sign of weakness. That I’m letting everyone down by being in the middle of a flare and not knowing exactly what caused it and how to fix it immediately. Like I’m somehow a failure for this.

Yet, in a small moment of clarity, I recall a recent interaction. I met a wonderful woman at work that was wheelchair bound. She was telling me all the things she used to do before her failing health stripped it from her. I shared a bit of my own story and things I’ve lost. She looked at me with tears in her eyes, and asked if I ever feel like a terrible burden and useless. That if she couldn’t do things she loved and make gifts to bring smiles to people, what good was she anyway? That if she had to rely on her husband to do everything for her, wasn’t she just a burden that he’d be better off without? (Now, her husband was also shaking his head and giving her the stink eye during this, bless him. And you could feel the love from him)

I had told her, fully believing it, that she wasn’t worthless. She made my day. She still touched the lives of people, and that mattered. People she made things for in the past, I’m sure still look back and are touched. The fact that she touched so many lives is incredible. So just because she’s not doing the same things she used to, she was still a bright light that was needed in the world.

I’m not one to say that the universe has everything planned, but I think we needed each other. Because as I’m facing all of the frustration from my mast cells not being able to fully calm down from a tantrum, and feeling utterly useless…I remember this shining light of a woman. I still have to fight my mind, because it’s an ingrained thing that I’ve had beaten into my head. But it has helped.

But What About Solutions?

Well…I’m just now, over a week later, looking like I’m turning a corner with a shift in my medicines. I’ve also been in contact with a company that is run by an incredible couple called Dirty Unicorn about making a hand salve for me that may be better than the bar lotion I have currently. I’ve just ordered some soap from them because I love the scents they use.

I let my cat cuddle me and act like a fuzzy nurse. Just having him around to pet, feeling his weight against me, is soothing.

I talk to friends that have an understanding of what I’m going through. We talk about the problem, touch base, and then have a conversation unrelated to medical things.

I keep my primary care doctor informed of the progress or lack thereof as well as any changes I’ve done myself.

I have alarms set on my phone so I make sure to take my medicines on time and so they are apart enough to not interact with each other.

I put on meditations to help me rest. Even if the meds are making me sleep, they help my mind go to a better place while drifting off rather than focusing on the depression downward spiral.

I let my other half help me with tasks that I’d rather be able to do myself.

I try my best to be kind to myself, and reach out to friends that can give me a mental slap if I need it. Because this is stressful enough without my own mind making it worse.

I don’t respond to calls or texts unless I feel up to it, even if I can do speech to text. Because I wouldn’t ask anyone to stress themselves out and make their flare start back up, I won’t let anyone else do it to me.

And I just try to do whatever I can in the moment. Because there’s no way around it…the situation sucks. It’s horrible itchy, incredibly painful, and utterly miserable. I accept there’s nothing I can do to make the situation not suck. But that doesn’t mean I have to beat myself up over it at the same time.

I take the time to speech to text something like this just in case it reaches someone that needs to hear they’re not alone.

Also….I made some memes out of spite…because if you can’t make it better…make fun of your situation and spread the dark humor.

Friendships, in general, can be ephemeral. They can wax and wane and sometimes disappear with age, changing locations, and just life in general. I am very lucky to have two friends who happen to be sisters that I have known since we were 5 (well, the younger was 4). They are more like my sisters, and we share our joy, pain and laughter often. Many other friendships came in high school, a few in college (I didn’t have a good experience in college, which I will go into in a future post) and more from jobs later in life. While it’s normal to gain and lose over the years, I have lost more friendships than I would like to admit in my 7 years of chronic illness. It’s a strain on the dynamics of a relationship of any sort when you can’t go out or visit as often as they’d like. Constantly hearing that the friend you want to spend time with declines time after time, I’m sure it can make them feel unwanted or under appreciated.

I’ve made the decision to accept that it isn’t my fault that people move away from my friendship. These have not been easy things to accept. I miss the shared history, the fun times we have had. It isn’t easy to accept the loss of friends, but after I’ve reached out multiple times and don’t hear back, then I have to accept that they’ve moved on. I’ve cried over these friendships leaving me, but I also know that I didn’t do anything wrong. I do try to talk to my family and friends when frustration strikes to discuss and find a resolution. I ask people to tell me if I do something they don’t like at the time so that we can work through it. Please remember that these are MY experiences and feelings, and can be very different than someone else’s. The friends I have retained still ask me to do things, even if they know I may cancel. They are okay spending time on the couch just being in the same room. I may still say no, but it is the ACT OF BEING ASKED that makes such a difference to me, and my friends. Just the simple action of letting us know that we are still accepted and welcomed in their space. That we are wanted. It’s such a basic thing yet something most often forgotten, because they assume we will say no and that no means we don’t want to be included anymore.

Being asked means you feel included, even when you physically can not do it. To me, that is what is important. And when I do attend something, I need to build in recovery time. Normally for ME that is a day, but I know people that for every hour of being social, they need a day to recover. So if they go to a 4 hour event, it can take 4 days to recover.

It is the rare occasion that people see my pain and challenges for themselves. I have other friends who use aids sometimes, and others who are full-time wheelchair users or other types of aids. These aids, no matter if we use them occasionally or every day, are our lifeline to the outside world… but it’s complicated. This is why zoom was so important. The pandemic has done some good things in this world; allowing people to talk via Zoom, FaceTime and other apps has offered a world of accessibility that people like me would otherwise not have the energy to accomplish. This is something that needs to continue long after Covid passes into our memories, because it’s been a game changer for many people.

Remember that at the end of the day, friends can be support, become your family or also leave our lives. All of these things are acceptable, it is just how life can change all of us. And our lives may be a struggle, but unless someone tell us, we may be missing what the friend is experiencing. No one can walk in our shoes, nor can we walk in others. Kindness is the important thing in all aspects of my life, and I try to help others by being kind about what I may be missing.

It’s very frustrating when there’s no easily discernable reason. We both acknowledged there’s a reason, because there’s always a reason. Just maybe, ones that weren’t quite understood or we didn’t have the technology to understand yet. But that didn’t change the fact that we just wanted to know the reason because that would mean we’d have something we could act on. We laughed about how it’s probably the most absurd reason that nobody ever realized. And I said…..

…Like A Purple Cow

Where is the purple cow? Doesn’t matter, it just exists.

Why is it a purple cow? No reason other than just because.

Have you seen the purple cow? No, but I know it’s there.

Why is it the fault of the purple cow? Reasons.

What does the purple cow want? Nobody really understands.

Sometimes, the cow was angry. What was it angry at? We weren’t quite sure, but we said it was when it caused pain. So when there’s stomach pain, joint pain, nerve pain, and all without an easily diagnosable reason?

It was because we were dealing with a very angry cow that was stomping around for no good reason.

Sometimes, the cow was hiding in plain sight. When you have something that seems like it’s an obvious issue with an obvious treatment. I once had a massive flare of what looked like poison ivy. Didn’t itch a whole lot, but that’s exactly what it looked like and it made sense. Took a steroid shot, and it got worse. Was given a high dosage steroid gel, and it got worse. Went to a dermatologist that shrugged it off at poison ivy and was convinced I was lying about the steroids because poison ivy would go away with steroids.

We never did figure it out, though we’ve assumed it to be MCAS related. But it was something that should have been very “normal” and “easy to treat”. Yet….it tormented me for over a month.

Purple cow

Sometimes the cow is a sneaky little thing. You’re having a good day. You’re getting things done. Enjoying life. Hanging out with friends. Working. Whatever you happen to be doing. When all of a sudden….

….without warning…

BAM! Debilitating symptoms! Whether it be a migraine or a joint going out of place. Gastroparesis causing you to vomit. Whatever the reason, it snuck up out of nowhere for seemingly no reason.

Purple cow

A symptom that you’ve dealt with forever and thought was completely normal only to find out that it’s actually a sign of having a rare disease?

Purple cow that’s been painting itself to look like a zebra this whole time.

I wrote a post a while back that included using lizard pictures sent to friends to describe the state of my mental health. Godzilla was the “I’m in immediate danger and am in legitimate danger” signal. Sometimes there was a trigger I can pick out. Other times?

That damned purple cow showed up in a Godzilla suit.

Having an over-active immune system that thinks it’s helping, but is really causing you significant issues? MCAS rejecting food that’s good for you? Lungs full of fluid because it’s trying to encapsulate the invaders? Nerves in pain because they’re trying to let you know there’s something wrong but won’t stop screaming?

It’s a cow trying really hard to be helpful, in all the wrong ways.

I even designed a cow for when people try and tell you that it’s spiritual reasons that you’re feeling poorly. I generally degrade it into “woo nonsense” when it’s unhelpful suggestions and tangents. But it can be things like having terrible dreams for no apparent reason?

Maybe it’s your meds, maybe it’s a cow in disguise as something magical.

But whatever is going on…..

Whether you’ve got a random flare of shingles or mono. You get the bad news of a diagnosis. You have strange complications that confuse your doctors.

It’s so easy for us to worry. Maybe I screwed up. Maybe I’m being divinely punished. Maybe I deserve it. Maybe I had it coming. *Maybe my doctor is bad. Maybe I didn’t try hard enough. Maybe I’m being a drama queen about it. Maybe I’m just making it up. Maybe I’m just weak.

Or maybe…just maybe…life is chaos and there’s not always a nice and neat answer for everything.

Maybe….

It’s just a purple cow.

IF you like these designs, you can find them on the RedBubble site through the art page of RedTailArts there.

*If you ever think that your doctor is the problem or you’re not being heard, please get a second opinion! You should always feel heard by your physician and we know that it can be a difficult thing to figure out whether it is a doctor or a body problem.

For a bit of relevant backstory, I wasn’t diagnosed till I was in my mid 30’s. This meant I had quite a number of years thinking that a lot of really abnormal pains that I was experiencing were normal. I discussed this is more detail when I wrote about how it impacted my ability to interpret pain in a previous post, but this is about a slightly different, yet related, aspect.

When you have a syndrome that causes pain that’s uncommon for someone your age, along with uncharacteristic presentation? It can make it hard for doctors to even realize something is actually wrong in order to help you. I distinctly remember being in 4th grade and having issues with my hips rolling out and making it difficult in PE classes. But all of my concerns were brushed aside. The pediatrician, as far as he was concerned, saw nothing to suggest that my hips were having any significant issue. To be completely fair, here was a child that would rather draw, read books, and play music than do sports. When he did a quick exam of my hips, they weren’t out of place because they’d slip back in on their own. He wouldn’t have felt them partially dislocated. All he had to go on, was my word that I was in pain, and that wasn’t enough for him.

While I can point out my disappointment at how I was treated, the fact remains that it caused me to think that I was experiencing a disproportionate response to every day events that normal people feel without issue. I accepted this as truth, and the way I handled it, was to push past the pain. It became a part of my personality. I’d get light headed when I stood up to fast, but I forced myself to work around it. When I heard some runners talk about when they’d hid an almost trance state? I assumed that’s what I experienced so I continued to push past it. In my mind, if they could, I could too.

I spent an awful lot of energy on this. Looking back, probably an unhealthy amount of energy on pretending the pain didn’t bother me. But I wanted to prove that I wasn’t as weak as it was believed I was. I couldn’t run fast because my breathing would shut down. I didn’t have a lot of stamina because I’d get light headed. I couldn’t do pull-ups or push-ups to save my life and I didn’t realize at the time it was my shoulders were subluxing. Even tasks like volleyball would jar things in my joints. I didn’t know it was because my body wasn’t built right, so it was simply incentive to push harder.

Fast forward to 2016, when I suffered an injury from a rolled ankle that I couldn’t push past like I was used to. The more I pushed, the worse it got. After 9 months in a walking boot, I was sent to a Podiatrist that specialized in Ehlers-Danlos. And after a relatively brief assessment, told me if I kept pushing, I was going to walk myself into a wheelchair.

The Fear of Loss

It’s an odd thing to be faced with. Degenerative disorders that will eventually steal bits of your normal function. It’s a horrible looming threat that will creep into everything you do if you’re not careful. I know I’ve found myself acutely aware of it every time I’m able to go out and do things. I wonder if it’s the last time I’ll be able to fully enjoy it. Sometimes it’s a slow degradation, while other times it’s a sudden injury that permanently tips the scales.

This gets further muddied when healing comes into play. Many of us feel a pressure to heal as fast as possible. Much of it is stemmed in that fear of missing out. It can be a feeling that’s quite consuming, and understandably so. Granted, there’s a ton of adaptable tools and mobility aids. Unfortunately, many still suffer from a stigma from utilizing those…even if some of that is fully self-imposed.

Speaking from personal experience though? There’s a bit of grief that will follow such a shift, even if it is simply a different way to enjoy a hobby. And being that it’s human nature to avoid pain, and therefor grief? It only makes sense that we try to avoid such dramatic shifts in our lives. Even if it’s that avoidance that can further create problems. There’s many things that while healing from surgery, I was stubborn and found ways to still perform certain tasks. While other things, I’ve not bothered. I once shot competitive archery, and haven’t been able to bring myself to shoot with a crossbow. It’s a completely self imposed limit that’s pure pride. So, I get that there are some times where it’s easier on the mind to let something go than force it.

Pick and choose your battles, just as long as you are aware that you’re doing so. It’s not going down without a fight if you simply choose to focus your energy on one aspect of the war that takes priority. It’s okay and even expected to experience grief at a loss of a hobby. It’s okay if that grief comes up if you’ve just had to shift how you perform that hobby. Let yourself feel however you feel about it, and when the wave of it crests and fades once again? THEN decide if and how you will move forward about it. Loss will happen with EDS. As with any degenerative disorder. It becomes more about mitigation and the proactive decisions for the long game…at least as much as one can.

Diagnose Aggressively, Treat Gently

When I asked my surgeon if there was anything he feels strongly about that I should include, it was the concept of diagnosing problems aggressively, but treating them gently. Ideally, because of the problematic collagen that is at the root of all different types of EDS, we can have minor issues that can escalate very quickly into quite severe complications. We should be very active about getting our bodies checked out for common complications. I know from past experience in Pittsburgh, PA…a mix of insurance and medical professionals being unqualified in rare disease treatment can make this extraordinarily difficult in an official sense. I’m extraordinarily blessed to have several highly skilled members of my team that I can contact and get a speedy response from. However, that wasn’t always the case and I learned some skills to get around this as best as possible. Those skills have been further developed ever since my official EDS diagnosis.

I wrote about the diagnostic aspect in a previous post, but the general idea is that one can direct a lot of that energy to research. There’s a lot of nuanced information, and for the sake of not wanting to rewrite the article here, I suggest going over to that link and taking a look at the original. The only thing I currently have to add to the past post comes from my new Optometrist. He stated the most important thing is that we monitor closely for any problems. The faster we catch a problem, the less likely it will swiftly progress to something irreversible. It’s better to be overly cautious and never see a problem, than it is to completely ignore the risk factors. With EDS patients, by the time we consider something “bad enough”, it can often be beyond easier and less invasive treatments.

The other half of this, the idea of treating gently, is something that needs a bit more attention. Especially considering what I wrote about the grief aspect that comes with the fear of loss. How do we find the balance between putting effort into healing while not giving into the negative motivations lurking in our minds?

My personal suggestion, is to put effort into switching your perspective. If you utilize your ability to research as an energy sync, take some of that to look up the expected heal time for the average person. For example, someone without EDS, still is expected to take 6 months to a year for a tendon graft to fully take. If it will take that long for a normal person, it should be obvious that it will take a minimum of that time for us…if not longer!

Instead of trying to perform normal tasks ahead of schedule, turn your focus into thinking about resting as active treatment. You’re not sitting there doing nothing, you’re lying in bed with your limb elevated to directly impact blood flow to the area and reduce inflammation. You’re not being lazy and a burden, you’re intentionally making choices to give body the chance to do the work it needs to. I’ve even had times where I’ve made a conscious effort to see it as putting my body in time out instead of letting my down time be a punishment for myself.

Even my physical therapist, who is quite skilled with EDS folks, takes things at a horribly slow and gentle pace. She has often discussed with me the need to treat patients such as myself with great care. To treat us with awareness that, no matter how much we don’t want to admit it, our bodies are a bit fragile. Exercises that will never create sore muscles if done right may mean that progress is painstakingly slow. However, it also means that we’re not reducing our joint stability and risking further injury when our muscles get sore and tired from overexertion.

It’s a shifting of one’s mindset from using energy to push past pain and, instead, using it to find work arounds because of the pain. While we’re used to forging ahead on the shortest path ahead of us, taking the long way around can bring us to a more complete healing with an improved success rate.

My Personal Success Story

I’m not going to tell you that if you just have hope, EDS can get better and all your problems can be reversed with a positive outlook. However, all that effort I mentioned earlier? That I put into trying to push past pain? I put into resting when I was directed to.

Looking back, I honestly can’t even tell you why exactly I decided to listen to my surgeon at the time. It’s never been in my nature to rest properly and I was ALWAYS disobeying orders to let my body rest. Maybe it was the sincerity in his voice when he told me I would walk myself into a wheelchair. Maybe it was when one of my best friends said I owe it to myself to do everything I could to walk again. Maybe it was a mix of a lot of things. But whatever the reason, I actively made the choices to do exactly what I was supposed to do, and not push beyond that.

This was exceptionally challenging when I had unique complications that prevented my healing and required further treatment. My leg lost a considerable amount of muscle mass. There were times where I wondered if I would never walk properly again. There were times I wanted to break the rules and just walk on it anyway, pushing past the pain, trying to force my body to listen to me. I’ll be honest and say there were times I felt it was hopeless. Thankfully, in those times, I had a lovely support network and a surgeon that was actively invested in his patients. But what’s most important, was that I was still actively making choices to try and give myself the best chance for healing in the long run.

It was incredibly difficult. I won’t pretend otherwise to make it more enticing.

But as of right now? I’m walking up to 7 miles without rolling either of my ankles even once. The pain is greatly reduced. I go up and down stairs without a problem. I’m getting back everything I had to put on hold while healing. The joy that brings? That I could walk on the beach with my friends, in the tide as well as the soft sand, and laugh? That I can go outside and work in the garden without needing to wait for someone to make sure I am safe? It is well worth all of the difficult moments.

So however you need to work it in your mind to make it easier for your brain to digest. Treat yourself gently. Don’t be drive by fear that you end up pressing yourself into creating more problems. We’re not Clydesdales that are meant for heavy work…we’re zebras. A bit wonky, a bit goofy, and sometimes even a pain in the ass. But we’re also incredibly resilient in our own way.

To quote one of my friends J. Coursey Willis in his song Inside Me Now (link to full lyrics and music):

And I’m telling you to please keep moving on
‘Cause I’m stitching up all that I’ve got wrong
And I’ll find myself someday …

I’m not giving up just yet
But would you take my hand?
Show me where this long road ends
And I just hope you’ll understand
That I’m doing the best I can
With all of these untended partial threads

So What ARE Smart Crutches Anyway?

Smart Crutches are forearm crutches that are designed to better distribute your weight and therefore allow you to use them to get around for longer distances without pain or discomfort. For us Zebras with Ehlers-Danlos, it means it also means less subluxations and dislocations than regular crutches or knee scooters.

In their FAQ’s, they have an infographic that talks about specific needs for EDS patients such as putting more weight along the forearm rather than the shoulders, elbows, hands, and wrists. They were also designed to help us maintain a proper posture while using them rather than leaning over, again putting less stress on our joints. To help them last as long as possible, they also have replacement parts so you don’t have to buy a whole new set when one part breaks or wears out.

Features Listed On The Website:

• Ergonomically designed grips provide natural wrist angle and even load across palm.
• 15° to 90° forearm platform settings to meet personal comfort and mobility requirements.
• Locking spline allows for secure rotational angle settings.
• 3-point forearm length settings for additional customization.
• 10-position push-pin height adjustment (Range between sizes: 4′ 8″ to 6′ 7″).
• Hourglass-shaped foot design maximizes surface contact.
• Shock absorption built into the design of the specialized ferrule and cuff memory foam.

Benefits Listed On Their Website:

• Transfer of weight to forearm results in less fatigue and injury prevention.
• Less pressure on hands reduces pain, discomfort or blistering.
• Mitigates the potential of pinched or damaged nerves.
• Improves posture and gait resulting in less pain or fatigue.
• Allows freedom of hands while still providing support.
• Easier to navigate while ascending or descending stairs.
• 10 fashion colors to suit personal style.

My Experience Ordering From Them

I’m not often impressed by a company. Normally, it’s either smooth running or I’m disappointed. Impressed? Rarely. This company however?!

So first off, they have a really easy to understand sizing chart. There’s a lot of adjusting that can happen with them, so there’s not a need to choose between so many sizes that it’s intimidating.

They also have different feet to purchase for them to best suit your needs. Ones for grip in the ice, non-slip, and even long distance and hiking.

But I had questions that couldn’t be answered about what feet I should get specifically because of needing them to hopefully go long distance if needed on uneven ground WHILE having EDS as a complication. I tried looking at reviews on the site and videos on YouTube, but they weren’t specific enough for me to be confident in my order…so I had the goad of emailing customer service. To my surprise, they had a text option, so I figured I would give that a shot. I was honestly expecting some kind of automated service to go through. It’s been a while, but I sent something along the lines of “Hi, I was interested in purchasing a pair of SmartCrutches, but I have some questions about using different feet because of having EDS.”

Imagine my shock when I get a text from a different number from one of their employees from their personal cell! Not only did someone get back to me, this gentleman ALSO HAD EDS!!! They specifically got one of their EDS people to get back to me because I mentioned it in my text! He asked all sorts of questions about which joints were bad, how much I can lift, how often my shoulders dislocated, my confidence in my shoulders. We were able to discuss it with an intimate understanding that I didn’t have to try and explain to someone without it that was only trying to make sales. He was very honest that either of the spring loaded ones can take more strength and muscle control while the Tornado ones had a much larger base as well as his personal experience with them.

I ended up getting both the TornadoAIR and the Tripod ones. I figured I could use the Tornado ones to start, and Tripod ones for when I want to try and do a nature trail walk. They also had a sale running at the time, so it ended up being cheaper if I got them both at the same time as the crutches rather than at a later date.

But Do They Work?

I ABSOLUTELY LOVE THEM! ***

That being said, I want to be very clear about my experience with them because I wasn’t so excited the first week after they arrived.

They do not feel like normal crutches at all when I first tried them. The stock feet have a bending point to allow for a lot of smooth movement compensation. But when you go from very rigid support to something that wiggles? It was a bit unsettling to put my full weight on them.

I also had trouble with how the instructions said to set the height. The instructions themselves were easy to follow, but it really didn’t feel right. I tried moving the height and switching between the 3 different angles for the arm braces. I honestly went into tears several times because I had initially thought I made the biggest mistake purchase ever. I had just two weeks till my next surgery and I couldn’t seem to use the crutches I just ordered.

Thankfully, I’ve got a few people that have always been hugely supportive. They convinced me that instead of jumping into trying to put my full weight only the crutches, why don’t I just use them as kind of a cane. See if I can get my body to slowly adjust.

My other half also set the crutches back to where the instructions said to put the height to and insist I learn to at least use them as suggested first. I was quite grumpy about it…but it was really the best approach to take.

We’d go for short walks, just under a mile just using them as very light support. They held maybe 50% of my weight at most during this time. By the end of a week, I was finding myself a lot more confident on them and would do the occasional long hop just because it was kinda fun.

The second week, I was able to start putting my full weight on them for part of the distance we were walking. Some of it was simply getting used to how I had to shift a bit of my center of balance. Some of it was a bit of muscle training. Despite my arms being fairly muscled, I was asking them to do things they weren’t used to.

They became my best friends on days it was too painful to put weight down on my foot. I could go up the ramp leading to my front door. I could slowly go up and down stairs at work. I could move in smaller spaces than what a knee scooter allowed. They took up less storage space. The only downside was that OMG they were EXHAUSTING! Part of it, I’m sure was the fact that I’ve not been hugely mobile for several years and my whole body was protesting the fact I was pushing it.

So I still had to plan for only taking short trips on them, but they have been a major game changer. I’ve not dislocated my shoulder on them. The nerves in my arms never got angry from being pinched. My elbows and wrists didn’t dislocate either. Sometimes my hands would get tired, but nowhere near the speed at which they’d protest using a walker or regular crutches.

I don’t need them nearly as often as of late. However, just the other day I subluxed my knee and I can’t tell you how happy I am that I had these available. It reminded me just how much they gave back to me. So today, I grabbed one of my dearest friend and convinced him to take a handful of impromptu pictures to show that yes…a zebra can absolutely use them and put their full weight on them as long as they’ve got some upper arm strength.

They’re not a simple fix, so just don’t go into it thinking that you can pick them up and run marathons straight out of the box. They’re incredible, but they’ve still got a learning curve. But I absolutely recommend getting a pair for us EDS folks or anyone that is going to need long term crutches. Their representative was also quite accurate when he told me the spring loaded ones are harder on the shoulders. So if you’re not confident in your shoulders, stick with the Tornado or stock feet, at least to start out.

***I am in no way sponsored by the folks at SmartCrutchUSA or have been given any compensation for my positive statements. This is simply an honest review of the product and how it’s changed my life.

Our brains are….special….sometimes. I wrote about this specifically when dealing with a diagnosis a while back. Some of it can be directly relevant, but I’m wanting to deal with just the things that I can share related to this stay at home order.

Those of us with a…let’s just use the term harsh, diagnosis…have all been there. I’m not going to lay a guilt trip and say “At least your circumstances are temporary while mine are more permanent”. It’s not helpful and it’s derisive. So you’re not going to see that here. I’m aware that the circumstances are quite different between a pandemic and a degenerative disorder for so many reason. But, they’re not so different that we can’t use our experiences to help each other out.

I know how jarring it is to suddenly be told that you’ve got to change your life. Nobody likes change. We don’t like change even when it benefits us let alone when it’s something that can be as scary as a life threatening virus. You’re being told to make these changes to help save lives of your loved ones, we’re told to make changes to keep our bodies going as long as possible. They’re helpful changes, and important changes, but we hate them anyway. On the flip side of that? Us zebras? We’re also here to tell you that the darkness that you may be feeling about your new restrictions is only temporary. Not only because one day this threat will be lessened, but because folks like us have learned to adapt and once again find joy in our lives despite the restrictions. That mix of fear and anxiety and dread about not being quite sure what comes next? It will fade no matter what the future holds for you.

Everyone is handling this differently. Some have performed some incredible mental gymnastics to convince themselves that there’s no risk to keeping up with their comfortable habits. Some cry in fear and confusion. Some feel numb and just sit at home and watch Netflix and YouTube. Some push themselves to help any way they can. Some sit in front of the news all day. Some get angry and defensive over any little topic. Some are overpowered by fear and anxiety. But all of this? It’s a type of grief. You don’t have to like it, but it’s in your benefit to accept it. It may sound silly because most equate grief with only death of loved ones, but you an and do grieve over a lot of other things. Like sudden and significant changes in your lifestyle.

But what can you do about it?

First? Take a step back from your social media and your news groups.

I know, it seems counter-intuitive. But sometimes we get overwhelmed in the disguise of trying to educate ourselves. There’s a very fine line between being informed and stressing yourself out with information overload. Where we learn this with EDS is that there’s a multitude of sites and groups that will ChickenLittle you into a panic about everything will kill you or every ache and pain is something devastating. So take a step back. When you do go back to it? Limit yourself to ONLY credible sources and ONLY a limited amount of time. Don’t live in the chaos. I’ve written a past article about how support groups can have a negative impact at times if you’re interested in a more detailed explanation. In general, a lot of sites are more interested in the number of clicks they’re getting rather than assisting you in your understanding. Keep up with official updates from medical folks like the CDC.

Figure out what you do have control over, and what you don’t.

I’m not talking about whether you can be comfortable going out in public with a mask, I’m talking about things like you can’t control whether other people follow the recommendations, but you can control whether you and your family do. We are forced to learn this after being diagnosed with an syndrome without a cure. We have to pick and choose what to spend our energy on or we risk falling at high speed down the rabbit hole of despair. You may not be able to control whether you get sick, but you can control how easy it is for the virus can get to you to some degree. When you hear news that upsets you or creates stress, ask yourself if there’s something you can actually do about it. If the answer is yes, decide whether you are willing to act upon it. If the answer is no, mentally put it aside. Know that it’s not out of a lack of empathy, but instead an act of self-care.

Creativity is your friend

There is a bit of truth to making your challenges into a game. It’s very easy to get sucked into a depression from being forced away from your comfortable habits into a new way of life. I was told I needed to stay off my ankle for a long time. I couldn’t walk to work, or easily do my own laundry, or even easily cook dinner. So, mentally turn it into an adventure. It doesn’t have to be a true game as one would play with a child. But even something like pretending you’re in a zombie apocalypse, can you survive? Take it as practice. Let it be fun. Have to go to the grocery store and they have a limit on the number of folks in the store and you have to only go one direction? Make it a personal challenge to get everything on your list in one run through. You have two choices, you can be that asshole that makes it harder for everyone by insisting you’re above rules, or you can alter your habits. If you (and I’m going to hope you do) try your best to alter your habits, might as well find ways to trick your brain into having some level of amusement rather than dragging it kicking and screaming.

You are not your productivity

Making tasks a game won’t fix the stress. It’s meant to help, not fix. So it’s important to remember that it is okay to not get everything done that you used to. The main thing is to put honest effort into trying. We’ve all been in the spot where the reality of our situation becomes overwhelming and we have days where we crash. Nothing gets done those days and it’s easy to beat yourself up on those days. But try and remember that this is a difficult time and it is perfectly normal to have days where your brain just crashes from the stress of such change. It’ll adapt. Just give it a bit of time and be kind to yourself.

It’s not about never being stressed, it’s about going forward despite it

However you’re feeling about this? It’s normal. Acknowledge your emotions. Let yourself feel the emotions. Let them do their thing and have their time. And then put them away and get back to work. While we’ve all had that spot where the reality of our situation became overwhelming…we also all had that spot where we were forced to come to terms with the fact that life doesn’t wait for you to be happy with your situation. You don’t have to wait to adapt to get things done. Just try your best. That’s all we can ask of others as well as ourselves. Just trying your best. It will help your brain adapt, the more you keep gong the best you can despite not being okay with it.

Use this time to communicate with loved ones

When us zebras get bad news, we call those closest to us. Most of the time, it happens that those closest to us are often also zebras. You may think that’s a bad idea because every zebra will ALWAYS have something going on that’s causing stress in our lives. However, it’s often a great way to REDUCE stress in each other because we get to vent about things that the average person doesn’t understand. The important part is that if you (or your loved one) are not up for communicating, that this is expressed clearly. There’s nothing wrong with saying, “I’m sorry, I love and support you, but today is just not a good day for me”, and declining a phone call or private message session. Right now, we’re all stressed. Reach out to you loved ones and see how they’re doing!

Don’t let being self conscious get in the way of your health

Most of us are all just a little bit vain, and generally this means that most folks are not excited about the idea of wearing face masks. Trust me when I say many us zebras know exactly how you feel when we’re told we have to walk with a cane, or wear ring splints, or wear a mask for other reasons than just the virus. But health is more important that when people snerk when they see you with your mask. You are not responsible for their reaction to you trying to protect your health, you are only responsible for your health and the actions you take to protect it. If it makes you feel more comfortable, decorate it! I’ve got a friend that’s sewing feathers into the side of hers and my other half is making me one with a plague doctor beak over a functional mask. There’s a point where apathy towards other people’s reactions is VERY healthy. If you’ll forgive my crudeness, fuck’em. Wear your mask. Refuse to hug. Insist they stay farther from you. That temporary discomfort is much better than the discomfort of a ventilator tube.

Diet and exercise isn’t for normal days only

Comfort food is great and can be an absolute necessity to keep your mental health in an okay spot. But don’t use that as an excuse to let yourself do things you normally wouldn’t. Don’t eat your feelings. I know it’s tempting. Your bored, your stressed, you can’t go out places…eating a whole bag of chips and chasing it with a cheesecake sounds satisfying. Don’t do it, at least not more than one day. You owe it to yourself with all the effort you’re putting in now, to not shoot yourself in the foot with the food you put in your body. Use this time to explore new cooking techniques or share recipes with friends who have had to eat a very limited diet. We’ve got tons of easy yet healthy foods that we’ve learned over the years. Similarly, you can’t go to the gym, but you can still find ways to stay active. Go for a walk, dance in your living room, do leg lifts while you watch Netflix. Stationary yoga is even a thing, just something!

Change something intentionally

Rearrange your living room. Plant seeds in your garden. Reorganize your storage. Your brain is so anxious over not being able to control the change being forced on you…so give it something to control! It doesn’t have to be a major task, but something you’ve wanted to do for a long time.

Take a moment to be in gratitude

No, we don’t have to be happy about it. The situation sucks. But it goes back to that whole control thing. We can all have something we’re grateful for. Something small, like being happy you’ve got a best friend to talk to. You were able to get unemployment assistance. You still have a job. You have a pet that loves you no matter what. You’ve got a good doctor that you trust. Even if it’s simply that you can be grateful that you’re still alive today. Maybe grateful for past experiences. It’s not about finding ways to make it better, it’s about appreciating what you do have. Reminding yourself of even the smallest of joys can be helpful with the light of hope is the dimmest. The joys will not erase the negative, but you’re allowed to feel comfort despite the rest of it.

Learn a new skill

If you’re stuck at home and bored of everything you already know how to do…learn something new. There’s a multitude of YouTube videos and Facebook groups dedicated to learning how to do new crafts. Now, I recommend staying away from the click-bait things like 5-Minute-Crafts because they do a lot of things that are fake and a waste of material. Pick up something easy, like cross stitch. Try something more complicated like making a pine needle basket if you live in the south, I’ll add a video for how to do it. There’s no better time than now. If you’re stuck at home with limited places to go, why not? Things like that helped me keep my sanity when I was immobile after surgeries.

It’s normal to feel anger and grief over missing out

We zebras know better than most, that it can hurt tremendously if you have to cancel plans. I wrote a whole thing about it from our point of view when it seems like we’re just being flaky or trying to avoid you. We know, it sucks, it hurts, it’s frustrating, it doesn’t feel fair. I’m not going to pretend that video calls are the same, but it’s something. Trust me…we hate it when we need to cancel plans to. But we can also tell you that it’s better than nothing and MUCH better than taking a huge risk to our health. This time, it’s not only a risk to you, but to those you love. So do what you can in ways you can. No, it’s not going to be the same. But it’s something that is safe in the now so you can have MANY more opportunities later. Don’t rely on hindsight to teach you this lesson.

Seek help when you need to

There is no shame in needing extra help. There’s a lot of therapists and physicians that have gone to virtual appointments. Call them. Make an appointment. There’s nothing wrong with getting help. Even therapists go and see other therapists because everyone needs a little help from time to time. If you try everything that you know how…then don’t hesitate to ask for help. We’re all in uncharted territory and it’s perfectly normal to not be able to handle it on your own. It’s okay.

We’re all in this together. So let’s try and remember that as best we can and reach out to each other. Help where you can, ask for it if you need it. Because even when the tunnel is dark, there’s always an end to it. There’s always a light to find.

Stay safe as you can and may we all see each other on the other side of this with a new appreciation for each other when this is all over.