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.

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.

Derek Redmond hurts himself, and he refuses to quit, even though his face clearly shows his agony. His father RUNS to him and helps him, sometimes forcefully shooing the officials away.

Life for a Zebra can be like these runners. We come out of the starting gate with our peers, and at some time in our lives, the injury slows us and eventually, our peers are so far in front of us that we are straining to even see their dust. We lose friendships. We lose jobs. We lose our livelihoods. Some lose almost everything.

For me, my mom is like Derek Redmond’s father. She holds my arm and supports me while I hobble along attempting to run the race of life. She comforts me when I cry, shoos people away who may doubt my pain and issues, and generally helps me keep going. I want to finish this race of life in my way – helping others and staying as strong mentally as I can.

Mental strength is HARD. Imagine that you spend every single day fighting insurance companies for approval for every thing you need, talking to multiple doctors about the many issues that plague you, trying medication after medication to manage conditions, trying to explain to anyone that yes, you agreed to dinner but the day was hard and now you need sleep. All of these things are draining. Most people find just one of these things hard, so multiple things in a day, and every day, feels like that Olympic runner.

Zebra (or any chronic condition) life is HARD. It means you may not be able to work, but you work every minute of the day to function. Sometimes just getting out of bed for an hour is work. Sometimes the victories in our lives are so minuscule to other people, and so gigantic to us. Those victories range from making more than one meal a day (cooking is hard due to standing and repetitive motions with the joints) to walking a block to getting a much needed medical test done. To some people, these victories are meaningless. To me, and many of my Zebra friends, they are huge. Some days, one of these things is enough. Some days you get multiple things done, but pay for it the next day. Those are days I just say to myself “I am strong enough to weather even these bad days”. I know that my words can seem trite to others, but it works for ME. But what works for me, may truly hurt others. That is the nature of a Zebra life – we are all covered in different stripes, and we all struggle in different ways. I think everyone has a different journey to go on, and what works for me, may not work for anyone else. This just happens to be MY way.

This is a quote from the Derek Redmond interview. Derek’s father came down from the stands and ran alongside Derek. As Redmond later recalled:

The old man put his arms around me and said, ‘Look, you don’t need to do this. You can stop now, you haven’t got nothing to prove.’ And I said, ‘Oh, I have — now get me back into Lane 5. I want to finish.’

Derek Redmond, 1992

I want to finish the race, and I have to prove to myself that being a rare disease person isn’t the only part of me. I am also a friend, an aunt, a daughter, a fighter, and a chocoholic.
Thank you all for reading my first note.
ZebraSarah

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.

It’s not just today either, it really has been the past few weeks. Our weather has gone from the low 40’s and mid 30’s (Farenheit) to the 70’s and back again like it’s an Olympic challenge. Winds that are gusting at 60mph every few days. And honestly? My body is just not built for this. I would give anything to say that I’m simply just lazy because then I could drink some coffee and get back to things. Unfortunately, I assure you, lots of coffee on days like this will just lead to muscle spasms making everything more uncomfortable and leaving me just as drained feeling.

I hate the days like this because I’ve got things to do. I’ve got IT projects that I need to do, but I need more concentration than I’ve currently got to do it. I’ve got laundry to do before the week starts. Dishes always need done. I’m still behind on craftwork that I’ve been doing. I have things I feel I absolutely need to do!

So what do I do to cope and get things done on days like this? When it feels impossible to just get through the day?

Well…I go to work and do what I can as much as I can. But other than that? I rest. Most people would expect a list of things I do to try and work around this feeling of pure exhaustion. Drink coffee, do cardio, make a plan, take suppliments. But nope. I rest. Sleep if need be. I have slept for the majority of a day a few times.

Why? Because what we feel on our bad days is not just because we’re a little tired and need help getting kick started. Our bodies are done. They’ve got nothing left. To push at this point? You’re pushing your already stretched to the max system to use emergency resources.

I know it’s not the expected response and seems counterintuitive. Especially with the title being “How Do You Cope…”. But here’s the thing, we’re often taught that if we’re young, we shouldn’t need to nap or rest or sleep more than 8 hours. Ever. Unless we’re dying of the flu. It can be challenging for us zebras to acknowledge that we need to rest because of this. The hard part isn’t resting, it’s not beating yourself up for it.

Coping with the idea that we need to rest more than our friends and even older family members can be a GIGANTIC blow to one’s sense of self. Especially, if you’re like yours truly here and feel a need to push and do things no matter the pain level or exhaustion level. It doesn’t help that we totally judge people by their level of productivity. I can’t tell you the number of times I’ve seen memes about “Don’t tell me you’re tired until you have children” or “People who don’t work have no right to tell me their tired” or similarly worded things.

This may be an unpopular opinion, but those people are small minded and just want an excuse to feel better about their own exhaustion while being able to praise themselves for being able to feel that they’ve earned their rest period. They’re too busy ignoring the fact that they’re inwardly frustrated at their own inability to push past things to confront the reality that everyone feels different in different circumstances and has different limits. They’re too focused on seeing everyone as the same as how they would react or respond. Mainly…because I used to be one of the ones that beat myself up for needing to rest, or passing out shortly after getting home from work. I had to rationalize it for a long while, and it wasn’t easy. That right there is honestly what I needed the most help with. Learning that coping meant I had to stop being angry at myself every time I needed to rest.

So here’s the thing, you know how I mentioned that the allowance most give us for extra rest is if we’ve had the flu? When you’re fighting the flu, your body is fighting. It’s working overtime to get rid of an invader all while the invader directly impacts the bits your body needs to work. This is pretty common knowledge, and most will say to rest to give your body a chance to fight the virus. But…think for a minute…how is that different from what happens to a chronic illness? We may not have a forign invader to fight off, but sometimes our special needs bodies like to create battles to fight for themselves. It’s not that different as far as the end result.

Take my system right now for example. The barometric pressure changes, my muscles need to go into overdrive to compensate for the change in external pressure to keep joint stability. Joints still slip out because muscles aren’t ligaments and tendons, pain hormones are released, endorphins, inflammation markers. All those things shift ways your body digests food. Then you get fatigue because your body can only make endorphins for so long before it needs to rest to make more. But when I’m sleeping, I’m still in pain so I’m not getting actual rest in order to make enough for the next day. Then I’m pretty much feeling like Sisyphos with trying to catch up while not having enough energy to do it being my boulder.

I had to accept that I needed rest. That I was not built the same way as my friends who could stay up late and get up in the morning with just a quick jolt of coffee. That I was not like my friends that can just go to the gym even when they’re tired and once they get their heart pumping they’re better. I am not like my older brother that seems to be always running to a crazy level of productivity. I am me. I have different limits. It’s okay to be more exhausted than my friends that have multiple children. I don’t have to like it, but I had to accept it. Allowing myself to rest and even sleep for 10 hours through the day some times, allow my body to recharge on bad days so it has enough energy on the good days.

There is a point at which we should all look at our lives if the bad days start to outnumber the good ones. We should head to our doctors and get some tests run to make sure something more dire isn’t at hand. I’ve had where mono decided to flare and while all my organs were functioning fine, it was important for me to know that mono was the reason that I struggled to stay conscious at work for a whole week.

We may be more exhausted for smaller stimulus than most, but that doesn’t mean we shouldn’t question it either. Get with your medical team to talk about your exhaustion levels. See if there is a problem in your blood work. I’ve had issues with my VitD (as many of us do due to absorption issues) and it was at a level that was dangerously close to single digits. I’ve had anemia issues that needed addressed due to hemoraging (thanks PCOS and hyperplasia). I’ve have flares of mono when I get too stressed. All of this was important to get addressed. Taking the proper VitD suppliment, getting the Mirena IUD, and proper diet are all incredibly important in this circumstance. And even though mono was just treated by resting…it helped to know that was what I was facing rather than guessing and hoping or being defiant when my other half asked why I was sleeping so much.

Get. Your. Shit. Checked.

And then learn to accept that you may just have a new level of productivity to adapt to. The dishes will wait. Maybe a dishwasher is a worthwhile investment for you. Maybe just paper plates. Maybe you need a Roomba. Maybe you need to pre-make easy meals on your good days. Or get the meal supplement drinks for when you just can’t. Have an automatic feeder for your pets, or a support network that can help.

The main thing is learning to cope with the fact that you’re not a lesser person because you are not capable of running around as much as your peers or even as much as you’d like. After that, it’s all creative work arounds.

One of my things, has been learning to make meringue cookies. The most labor intensive thing, is piping them when they’re mixed. Other than that, I can watch them go. They’re relatively easy, tons of flavors, you can spoon them out or pipe them into pretty designs. So it allows me to feel accomplished because I’ve done a tangible thing. AND I get to share them. Want to give them a try?

What you’ll need

• Mixer with a whisk attachment, stand mixers are easier
• glass or metal mixing bowl
• small glass, corell, or metal bowl for egg seperating
• cookie sheets lined with parchment paper
• rubber scraper
• 4eggs (or maybe more)
• 1 cup sugar (run through a coffee grinder for easier incorperation)
• salt
• lemon juice
• cream of tartar
• flavor (extract or spices) and coloring
• piping bag with tip if desired
• oven preheated to 200 (Farenheit)

How to make them:

• Prep all your tools by wiping them down with lemon juice. If there’s any oil at all, this will kill your meringues. So just wipe them down and the lemon juice will help get rid of any traces.
• Seperate your egg whites one at a time using the little bowl. Why a little bowl and not in the large one? Because any yolk at all will kill your meringue. So seperate one so the white is in the little bowl, pour it in the big one. Do the next. Keep going till all 4 are seperated. If you accidentally break the yolk, dump it (or cook it and make yourself a snack), wash and wipe the bowl out with lemon juice, do another. You need 4 whites in your large bowl. **TIP** Eggs seperate better when they’re cold.
• If your egg whites aren’t at room temperature, just let them hang out until they are.
• Add a pinch of salt, and a bit bigger of a pinch of cream of tartar. Maybe…MAYBE a 1/8 of a tsp.
• Whisk on high till you get soft peaks. It takes a bit, so just watch it do its thing.
• Slowly, like literally take a spoon and put in one spoonful at a time, add your sugar.
• When you’ve done about 2/3 to 3/4 of your sugar, any flavoring that is free of oil should be added now. I’ve used marachino cherry juice, sandalwood syrup, vanilla extract, and cinnamon here. You can also add food coloring here if it is oil free. If you don’t have any…just keep going till all the sugar is in.
• Keep whisking till you get stiff peaks. (See, told you most of it is just watching it whisk)
• If you’ve got liquid flavorings with oils or things like chocolate chips, fold them in now with your rubber scraper. Add any other coloring you’d want too.
• I normally start preheating my oven at this stage, because it doesn’t take long to get to 200.
• Use the rubber scraper to transfer your meringue into a piping bag if you intend on piping them out in pretty designs. If not…ignore this and move on. **TIP** I’ve also put some food coloring in the bag and THEN added the meringue. That’s how I got the stripes on the meringes in the bottom left of the image above.
• Start to lay out your meringues on your lined cookie sheets. If your meringue has stiff peaks, it’s not really going to expand much, so you can place them kinda close to each other. Try not to make them to big or they might not dry out the whole way. But have fun with it.
• If you want any sprinkles on them, do it now
• Put them in the oven for just over an hour
• When the hour is up, DON’T TAKE THEM OUT. Some people leave them in the oven with it completely closed, but I prop the door open with the end of a wooden spoon so it’s only open a tiny crack. Let them cool the whole way. I know you really want to eat them. Go sit down and watch a Netflix episode that’s about half an hour.
• When they’re cooled, they’ll come right off the parchment paper and you need to put them in an air tight container. If they’re sticky, but cool…try and put them in the oven for half an hour on 175, then let them cool again. If they get exposed to too much moisture in the air, they’ll do this. Don’t try to put them in the fridge or anything, just let them sit on the table in their container.
• Ta da! You’ve got meringues! And you should have a good number of them. All with mostly watching and waiting.

I’ve had a lot of fun with them. I’ve done rose and pistachio, vanilla, cherry with chocolate chips, sandalwood, vanilla with a touch of cinnamon, cinnamon sugar, pumpkin spice, raspberry and vanilla, banana-peanutbutter-chocolate chip (using powdered peanut butter), and I’ve got more ideas.

Now, today, I am not even up for these. But they’re something pretty easy for when we go to holiday dinners that look fancy, taste fantastic, and I don’t have to put a whole lot of effort into.

When I say that it’s been one hell of a journey…

I’ve had multiple procedures done on my right ankle and it still is not behaving, despite having one of…if not the…best in the field overseeing it. The first surgery was about 2 years ago, it might be longer at this point because I’m honestly not sure and it’s not extremely relevant the exact date. It’s gotten Pseudomonas, a car wreck that caused the stent to migrate, MRSA, a tunneling wound that went about down to the implant, Chronic regional pain syndrome(CRPS), subluxation of a different area of the foot bones that shouldn’t be happening, intense allergic responses that caused a fair sized area of skin to erupt in terribly itchy blisters and then the top layer came off, weight gain and muscle atrophy from the inability to get up and walk, and a granuloma that just won’t take the hint and die so we’ve named it Rasputin. We’ve had 3 occasions where I had to go into the OR get work done on it, and I think we’re up to…5 or 6 procedures in the office ranging from removal of the wayward stent to debridement and stitches. Meanwhile, there was just a single OR visit for the procedure on the left ankle and it’s happy as can be.

We have no idea why it continues to have all the problems it does DESPITE following orders to the best of my ability. I’ve got saline to clean it and wear a shower boot so it doesn’t get wet with tap water. I’ve been mostly on a knee scooter to get around. Needed to wear a brace off and on, and especially to sleep. Had to pack a wound with using packing gauze and sterilized tweezers. Use silver nitrate on it daily for a while and it occasionally burned significantly. PICC line with daily infusions when one of the infections wouldn’t go away. Changing the bandage of this blasted thing, several times a day, for the better part of the entire time.

We’ve tried iodosorb, silver nitrate, acetic acid, carbolic acid, calmoseptine, stitches, Aquacel AG bandages, high absorbency bandages, gauze, different types of paper tape, colloidal silver, essential oil blends, diet shifts, medicated packing gauze, regular packing gauze, injections and I’m sure others I’ve forgotten. I’ve seen my podiatrist, infectious disease, acupuncture, my primary care, physical therapy, and even networked with other wound care specialists and someone that worked in hyperbaric therapy.

We’re still working on a solution that doesn’t involve an OR again. And it’s getting so very close, but we’re not quite there yet.

But with EDS, we’re in for a marathon, not a sprint.

Despite everything I listed above…I’m generally not angry about it. That’s not to say I’m always the epitome of sunshine and rainbows. There’s absolutely days when I’ve broken down in tears because I got less than ideal news or a new suggestion to try. I have my moments of “Why am I like this? What’s wrong with me?” or similar feelings. There’s also times where I’m so angry that it oozes into every room of the house like a bad smell, my other half says I’m “filling the house with Fuck You”, because I’m so tired of looking at it and not having answers. That’s just being human, as much as emotions are icky and often involve unwanted fluid leaking out from around your eyes, it just comes with the gig.

Maybe I’m not angry all the time because I know it’s confusing. If one of the most experienced surgeons for EDS feet and ankles is confused…I’m personally more intrigued and interested in helping any way I can rather than wasting time on being angry over something that has no blame to place.

Maybe it’s because I know we’re a complicated mess where not a lot of doctors understand in general let alone the small nuances. I can’t be upset at the fact they’re confused, when there just isn’t information commonly available for them to research. Let’s face it, enough of us have seen when our friends post a bad headline on a subject that could be easily researched and learned about. This happens so much, educated folks put out articles to counter it. I’m still haunted by the fact some people needed to be told Sticking a Wasp Nest in Your Vagina is a Bad Idea. Seriously ladies…WTF? Back on topic, doctors are still just human, no matter how much we wish they were so much more. So if we can’t get people to research obvious things…you’re expecting every doctor that already has a full plate with every other patient to be able to hunt down information on your specific set of weird when you may be their only EDS patient? Sure, I could wish that it would be the standard. However, do remember that just because they graduate with a degree that says they’re a doctor…it doesn’t mean they’re at the top of their class and they’re a super geek with an eidetic memory. Also keep in mind, for a large population, they don’t need to be.

Maybe it’s because I know that because we’re a genetic mess so sometimes there’s no easy answer, I’m not expecting my visits to be super productive and helpful every time. Sometimes, they’re just checking in and making sure it’s not worse. Sometimes it’s planning for the next step. Sometimes it’s drastic steps forward. It’s very fluid. But even on the days of rapid change, we’re not sprinting towards a finish line. We’re in a long marathon with a never ending path of hurdles along the way. It doesn’t mean I stop hoping for simple and easy answers, it just means I adjust how much I expect them. We don’t get an inhaler and most of our issues are resolved. We don’t get to take a pill and that’s the end of our complications. We don’t have to like it, but it’s in our benefit to accept the reality of it.

You say patience, I hear F*You

Now, despite me saying that I’m not angry all the time, one thing I do have that tips me over the edge is my level of patience. Oddly, this usually surprises people that know me. I do really detailed paintings on feathers, cross stitch, and beadwork with tiny seed beads. People assume I have the patience of a saint. I do not. I’m full of stubborn ambition that I will accomplish a goal that is set in front of me. If that means ruining 20+ feathers on my way to figure out how to get it to do what I want…I’ll do it. If my cross stitch project takes 5 years because it’s absurdly huge…I’ll do it. I may cuss at it and scream occasionally, but I’ll do it.

When people ask how I’ve managed to do all the things along the road to healing. Stubborn ambition. Stuffing stuff into an inch deep hole in my ankle will help it? Kay. Get out of my way. I got this. Walking on a very angry nerve will desensitize it so it stops screaming so loud? Kay. Someone walk with me in case I pass out from pain, but don’t try and stop me. Numbing agent wearing off but I still need stitches? Kay. I’ll yelp and whine, but just get it done. Stubborn. Ambition.

I don’t deal well with the concept of patience. I want a goal to work towards. Something to do in order to help me get there. It’s one thing if the pain is significant to the point where it’s excruciating to do much more than lie in bed. It’s another when you just have Rasputin the granuloma that follows its own rules for existence and mocks you by returning no matter what steps you take (or don’t take). When you aren’t in pain and yet you just have to kinda sit there and watch your other half do the majority of the house chores, and cook, and feed the animals, and……you get the picture. Yet Rasputin pretends to sleep and comes back with a vengeance without any discernible reason.

When there’s nothing to do to help, I go a bit stir crazy. I don’t like to just sit and wait and hope. If you tell me “you need to sit with it up for now because having it level with help defy gravity pulling fluid to your foot and therefor reduce the drainage and the moisture level”, I got this. I am doing a thing to achieve a specific goal. I will sit with my leg up at work and at home and try not to even be in the car for long. To the outsider, it looks like patience with letting myself heal. In reality, I’m working on a task. That task just happens to need me to be stationary. So if you tell me, “you just have to be patient”…to what end? Why? Will it help? How? I don’t understand. I need it to heal, if patience will not help in specific, I’ve no need for it.

This is accentuated if someone tries to tell me that I have to be patient to wait for the implementation of some divine plan. I have to learn to be patient because something else thinks it’s important for me and is implementing a plan without involving me in it first? Nah, I’m good, thanks. If it’s that important, said divine presences are free to make themselves known and I’ll be open to suggestion. Until then, I’ve better things to do than wait around in hope simply being patient will fix a damned thing.

How to twist it to my benefit

I’m not implying this is a good way to look at things. It works (mostly) for me, and I don’t have any designs to change it any time soon. HOWEVER, at it’s core, I’m sharing this because I’ve mixed in a bit of how I turn a flaw into something I can work around for my benefit. Did you catch it?

By definition, patience is the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset. Personally, being told to “be patient” has managed to work against any of those virtuous qualities I’ve worked to attain. So…I found ways to be patient, without calling it that.

I’ll call it taking the time to understand the reality of my circumstances and giving empathy to those that are working with me.

I call it discovering reasons behind why I should be stationary and simply wait for healing to happen.

I call it stubborn ambition when I need to accept the fact that it’s a long road ahead of me that may not have a pleasant ending instead of just a hop, skip and a jump to a full recovery.

I won’t call it patience, because to me, patience is when you handle it gracefully inside and out. To me, it’s not when you’ve engineered reasons behind why allowing delays or experiencing suffering isn’t something to be angry about. Perhaps you might see it otherwise and think with all I’ve faced, that you’d be angry and I must be exuding grace no matter what I perceive in myself. I don’t think it really matters though.

The most important thing I hope you take away in all of this is there is always a way to turn things in a different perspective to work for you. It’s not about giving people too much leeway on not doing their job when you have a doctor that isn’t able to help you. It’s not about forgiving and allowing yourself to be treated badly, it’s deciding what you can impact and what is out of your control and acting from there. It’s about shifting things so you are not held down by their actions or lack thereof. It’s not about never getting angry and heartbroken, it’s about what you do after in order to help yourself keep moving forward.

So it’s okay to not have the patience of a Saint. It’s okay to get frustrated or angry. It’s okay to yell and scream at your circumstances.

Just don’t forget that the significantly more important thing is to be able to come back from that in order to do whatever you need to. Be mad at the doctor that dismissed you, vent and rage, and then find one that is better suited to your care needs. Don’t give other people or bad circumstances the power over your life. Keep at it because you are worth it.

I’m not going to tell you to just be patient. Or good things come to those that wait. But I will tell you that you can’t find the good things of you stop looking for them. May you always find the strength to keep up working towards your goal one more day.

Nobody has meant it as a condescending thing thus far. From the outside looking in, they see someone that goes through their life in considerable pain yet you’d never know from looking at her. They hear my story, and automatically picture themselves in it, while relating what smaller influences have brought their lives to a screeching halt. I can see where it can seem like a super power.

She’s walked on a dislocated hip…
Worked through a migraine…
Got an stent removed from inside her ankle during an office visit…
IT’S EDS-WOMAN!!!

However, I don’t have a naturally high tolerance for pain. I adapted out of necessity. It’s not a pretty story, and I seriously wouldn’t wish that journey on anyone. Personally, it’s not a question of being brave or strong. It was simply what I needed to do in order to survive.

There is not a day that I am pain free, so much so I had a full blown panic attack when I was on dilauded after my first ankle surgery. Why did I panic? Because taking an extra pill made the pain go away. My brain had no idea how to handle not feeling pain, so it freaked out and screamed that I must be dying because it couldn’t feel things. It was not a fun time. I’ve been told I’m a trip on anesthesia and during a migraine. Give me meds that take pain away though…and I’m Chicken Little and everything is about to end. The same happened on nitrous oxide at the dentist. The pain was there but distant and…my brain freaked out and it screamed that we were dying. Then it decided to panic and run through a mental checklist of things I could do. Could I blink, could I swallow, could I breathe, could I move my fingers, could I move my toes? All because the pain wasn’t in the forefront where my brain thought it needed to be. My brain is obviously a masochist at heart.

Now, my daily pain varies from a general body ache in most of my joints to a highly significant pain that is nearly overwhelming. It doesn’t happen to a pattern or stick to a schedule, so I wake up not knowing what the day will bring. But, I always have something to do. A job to go to. Chores to try to keep up with. Pets that need attending. Life doesn’t stop because I’m in pain. My snakes don’t care if I have a rib out when it’s feeding day. Things need done, and the world waits for no one. At least…that’s what I told myself. Over the past few years, I’ve been forced into a situation where I need to learn to listen to the pain signals if I don’t want to push myself straight into a wheelchair. But I started pushing when I was very young, so it’s a hard habit to unlearn.

I was told often, that my pain wasn’t real enough for me to be inhibited by it. Doctors, teachers, family, friends. It was always said that I was just a weak girl that needed to get outside and exercise. I was a drama queen for saying normal activities hurt. Girls just need to learn that discomfort isn’t the pain they make it out to be.

My response to all of that wasn’t to get angry, it was to internalize it and believe that I really was weaker than most around me. After all, I could never do a pull up or a push up. Running hurt. I had trouble gripping things sometimes. I could bend weird but I still couldn’t even do a split. I even wanted to cry because my hands hurt bad when the weather turned cold. But nobody else my age seemed to be impacted as badly as I was. My little kid brain, took it as I truly was the weak little girl that they told me I was.

I wanted to prove that I could be strong, that I could learn to be better, be like all the other kids. So I tried to participate, even though my ankles rolled all the time. I’d keep going even though it felt like my spine was on fire. If everyone else could do it…I was going to try and prove I could too. I didn’t know that the people I was trying to measure up to, never felt the pain that I was in. Nobody told me that my muscles were actually pretty impressive however my ligaments came from Gumby and that’s probably where my pain originated. Nobody bothered to tell me that I was comparing myself on an unfair scale. Nobody bothered to even look at it in the first place. So I persisted.

So many people say things about how they could never accomplish what I have. Perhaps I’m a little bit jaded, but I can’t help but be slightly insulted sometimes. To me, it was never presented as an option to give up or to live on pain meds. It was being thrown in the deep end of a turbulent pool and told to simply learn to swim because all the other kids your age have. If you aren’t told that the other kids learned in the shallow end of calm waters, you assume you’re flawed if you can’t accomplish the same. It had nothing to do with being brave and on a noble quest to overcome and everything to do with just trying to be a normal kid, and later, a normal person. And spite. I’m definitely motivated partially by pure spite.

Yes, I can go to work with a migraine and function pretty well. I can act fairly normal when I’ve got a joint out of place. I’m willing to sit through procedures that hurt if that’s what it takes. But at what cost did I get to that point? I can’t say that I’d take it back, or I wish things were different. I can’t imagine going through life any differently. If having EDS means that I’ve got a life of pain, it works out in my favor half the time to be able to ignore it. Try and remember that it also comes with not being able to easily recognize that something serious is going on. The confusion of not knowing whether you should bother your doctor to see if an injury is worth medical attention. Doctors that are unwilling to help you because if you were really in pain, you wouldn’t be able to calmly discuss it. All because your brain has just accepted that significant pain is normal, so meh. Whatever.. Not to mention that when friends come to you with a painful experience, you come across as cold and unfeeling if you’re not careful. “You dislocated your finger? Okay…but…why are you freaking out about it. Just breathe. What do you mean you need help getting dressed? I don’t understand, it’s just one finger, all your others are fine…” And there’s always the really morbid sense of humor that can throw people. Nothing like casually suggesting someone take a chopsaw to your ankle to get most people in a room to look at you in horror.

I have no real concept of what normal life is like aside from an understanding that what I experience is probably different. I’ve had my surgeon tell me how well I’ve handled procedures they’ve done in the office with only some lidocaine. Yet I’m sitting here livid at my system for going into shock when I’m consciously alright from it. I’ve been told I’m weak so often and for so long, I honestly thought it was meant in a patronizing way the first time they said it. It never crossed my mind that the way I go through things was actually impressive.

Let that sink in for a minute. The trauma I’ve experienced is enough for my body to go into shock. But I’m so used to it that my brain doesn’t get swept up in it all the way. You’re not really supposed to be in a mental state to be annoyed at shock response to trauma. How much trauma do you think it takes to get to the point where the brain normalizes it to that point? To be sitting there, pale, shaking, nauseated, sweating, light headed, and to also be annoyed that you have to sit back because your body is freaking out over what you perceive to be “a little pain”. Fighting with yourself and trying to will your body into functioning. There’s been more than one occasion where someone asked if I was okay, and I replied in an emotionless voice, “Yeah, just shock response”

So while my high pain tolerance has been something that has helped me to survive and work past some of the hurdles in my life. I hope you are never in a situation where you body is put in the position where it has to do that to survive. My heart goes out to all those that have had to learn it, whether from something like EDS or another form of extended trauma. I know it can feel isolating, and there was a previous post that touched on some aspects of that as well. I know it can feel like you’re less human sometimes. It may not be traditional heartbreak from a lover, but it can sure feel like a part of you has been ripped out anyway. We may seem super human, or maybe less human, but really…we’re really just more broken than most and a bit on the numb side.