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.

Going To A Surgeon That Knows EDS

I’ve always had weak ankles. They’d roll and give out walking on a flat sidewalk leading to constant sprains. My physical therapist said I had absolutely no planar stability as she held my ankles and easily shifted them away from the joint. My feet were flat and my body had built up thick calluses in the arch to compensate. Occasionally, I would sprain it severely enough I’d have to walk with a cane or take a break from walking for a day or too, but nothing too bad…until…October 2016. I had minor tears in my medial ligament.

After 9 months in a walking boot, I still hadn’t managed to have it heal completely and my rheumatologist was concerned about muscle atrophy so he sent me to a podiatrist that specialized in EDS. I researched everything I could before hand. I stalked the website of his office. I found a video on YouTube (that I’ll include below) that had him speaking at an EDS conference. I wanted to know everything I could before the appointment so I was prepared for bad news as well as able to discuss the procedures and why I didn’t want them. At the time, I wanted nothing to do with it and was convinced he’d say I wasn’t that bad and just needed some specialized therapy.

It only took a few minutes into the first appointment for him to say I needed surgery. “Have you looked up anything with your condition? Have you seen any of the lectures I’ve done?” I said that I did actually watch the lecture on the EDS Awareness page. “Good, so you know what procedures I do! We’re going to do a ligament replacement and an arthroereisis!” He explained that they’d only do local anesthesia and that his people were used to EDS so I would be in good hands and that the procedure had an amazing success rate. It was, of course, up to me, but at this rate I’m walking myself into a wheelchair if I continue. Despite my intense fear, the fear of not walking again was far greater so I agreed to the operations. Now, I’ve shortened my visit into a few sentences but he did take the time to explain everything to me and he wasn’t bullying as I suppose it could appear from how I’ve written it down. He really was kind and understanding and took the time to answer all the questions I had, I promise.

So far? Best decision I’ve ever made and I’ve since had the left one undergo the same procedures.

So What Exactly Was Done and How’s It Different?

The first procedure, the ligament replacement was done with a synthetic ligament and bone anchors from a company like Arthrex. This was important because this meant my body can’t replace the polyester with faulty collagen and had a very low rejection rate because of being artifical. It would go across the anterior talofibular and calcaneofibular ligaments to compensate for the fact they’re both more like rubber bands and can’t do their job to hold my ankle bones in place.

The second procudure, the subtalar arthroereisis, was a bullet shaped chunk of titanium that would be put the space between the talus and calcaneus bones called the sinus tarsi. This would further add stability to the ankle by preventing the bones sliding around and compressing the sinus tarsi.

Though the end result is a foot that isn’t as flat, it was the internal aspects of the ligaments not being allowed to stretch and end up constantly subluxed or dislocated that was the important outcome. And the x-rays of my foot show a noticeable difference. You can see where the one without the hardware is stretched farther than the one without. The first image can be noticed most where the ankle connects to the leg and the angles of where the joints are. The second one shows how far my foot was able to easily turn; it was so far you can see the bones of the outside of my foot in the hardware-less image.

Learning to Walk as the Bionic Woman

The healing, I’ve touched on in a few other early articles. It was slow, but not terrible. I’ve only had two teeny little incisions on either foot because it was done laparoscopic…so no horrible scars. Because I’m a zebra, I had a few complications with the first surgery. Despite that…I’m now walking short distances. So first surgery in September, second in December, walking in January.

The muscles in my legs feel a bit funny sometimes and I have trouble doing things like painting my toenails because I can’t just partially dislocate my ankle like it’s nothing anymore. I can’t put the soles of my feet together while my legs and hanging straight down anymore. I can’t stand on the side of my feet. All of which are fantastic, but it takes some getting used to having a normal range of movement.

I still have to take things like hiking and dancing slow because the newer surgery is still a bit on the sore side with a lot of work walking let alone using it on uneven surfaces or jumping. But I’ve yet to roll my ankle. The ligament pain that I was previously unable to escape from has been gone and not showing signs of returning. I can point my toes on the initial surgery foot. And all without the fear of my body slowly reversing the surgery because of the faulty hEDS programming it has.

It’s been a life saver for me and I feel blessed to have a surgeon close by that does this surgery as well as familiar with EDS to handle the more odd complications that we face.

Dr. Patrick Agnew and Ankle Surgery with EDS Patients

I just had my second major surgery. It went well and though it was only a week ago, I can tell it’s healing pretty good thus far. The surgery prep was less than phenomenal, though it wasn’t the fault of a bad nursing staff. They dug around in various spots on my arms eight times before calling someone from the midline team.

I’ll state it again, the staff was fantastic. They were all very skilled nurses, and one was even my anesthesiologist that is familiar with EDS. The problem was completely with my veins that would blow or collapse on them. I can’t, and won’t, blame any of them because of my zebra veins causing problems. They were all kind, patient with my anxiety and slowly rising stress, and as gentle as trying to get the necessary IV allowed them to be. They even gave me a nice Ativan to help me calm down half way through the attempts and gave me warm blankets for my arms that were icy because of the Raynauds. Despite that, I will admit that I was struggling to hold back tears after one of the last attempts on my wrists. My surgeon happened to meander by at that time and asked how I was holding up. I looked at the anesthesiologist and back to my surgeon, and asked the both of them…

Can I Please, PLEASE Stop Being A Zebra Now?

My anesthesiologist responded with much appreciated humor and my surgeon responded with sincerity and empathy that, while I adore him, was unexpected. Though I was stressed so I don’t remember exactly, but it was something along the lines that while I can’t just stop being a zebra, how amazingly strong I must be to be able to handle being a zebra in the first place…only…I promise he was much more eloquent than that.

My pre-op nurses when I apologized for being a nervous wreck THANKED ME for my patience and cooperation and strength with this. I was told similar from my Primary Care Doctor, my Gynecologist, even my Acupuncturist. Not to mention friends that seem to never miss an opportunity to tell me. Even strangers that are visitors to where I work…”Wow, you’ve got an amazing attitude! You’re so strong!”

…But I Don’t Feel Strong

Especially not lying in that hospital bed, in a paper dress, arms with bumps from blown veins wrapped in warm towels, failing to hold back tears because I’m so broken I can’t even get an IV. Knowing I’d be going home to be confined to needing help with something as basic as taking a shower for about a month at least. Knowing I can’t be trusted to use a knee scooter the 200 yards to my work without supervision for at least a month. Yep, there’s the broken girl crying in the pre-op room.

I’m in pain all the time, and sometimes I break down because I just am completely overwhelmed with the fact I rarely have a day where something doesn’t hurt. I break down because I’ve been mobility impaired in some significant way with my ankles for over a year now. I break down because I’ve been breaking down more often than what I consider normal. Here I am, on the verge of breaking down in the hospital before surgery and they’re telling me how strong I am? And every time, I immediately think there’s something wrong with each person that sees me as having strength through any of this.

But Strength Isn’t About Never Breaking

This is something that I’ve still not learned well and will have to work on accepting. But strength in this situation is about choosing to push forward. I could have very well stopped after the fourth IV attempt, or even the second, and walked out. I could say “fuck it” to sticking to a strict diet that keeps me from going out to most places or eating without concern when friends cook. I could say I’m done seeing doctors for a while because it causes too much pain, and grief, and hopelessness.

Though I personally don’t see it as a choice, I persevere through each challenge the best I can. That after each time I break, I try and see what I can do next. If I stop being able to sit at my desk and paint, I wonder about ways to make it safe for me to do it in bed or on the couch. I am always on the look out for new things to try with my diet that will be replacements for foods I desperately miss. I’m even learning to let trusted friends know when I am truly not alright and should be checked in on occasionally. And though I still don’t see this strength most days, I have plenty that will remind me that while it feels inconsequential while elbow deep it in, the sheer fact of pushing forward in the face of adversity is where strength lies.

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. ~Eleanor Roosevelt

How We Got to Talking About Zebras

With the normal progression of how I talk to visitors this nice gentleman started talking about his clinic work. He still worked often and traveled to places like schools and industrial areas to deliver care because he loved what he was doing. It was always a new adventure, new circumstances. I had laughed that I keep all my doctors on my toes because I’m a zebra.

He paused and gave me a scrutinizing look. “You’re a zebra?” His look wasn’t unkind, but it was critical. “Yep! I am! Never a dull moment!” He asked what kind of zebra I was, still in a slightly skeptical tone. So I told him, I’ve got Ehlers-Danlos Syndrome. He looked at me, blinked a few times, and asked if I was serious. I chuckled and said yes, type 3, so… We said “hypermobile” at the same time.

It all was fun after that.

Sharing Ring Splint Experiences

During our earlier conversation, he had expressed his appreciation for my desire to constantly learn new skills and information. So, in the spirit of sharing possibly new information to him, I showed him my silver ring splints.

To be honest, I think he was about excited hearing about them as I was when I was given my first one. He was full of questions and it was a pleasure talking to him. What were they made out of? How long have I had them? Have I noticed an improvement? Do they make them in other metals? Did I know what company made them? Was it through Occupational Therapy? Do they make ones for the other joints? How long have I had finger joint issues? Do I plan to get other ones? With a lot of “That’s just brilliant!” thrown around.

I look one off so he could look at it and he was just so happy, like a kid at Christmas. It wasn’t only the rings themselves that he was excited over, it was the fact that they’re making a necessary medical splint as attractive as they are functional. He spoke about his views on the mental health benefit of attractive mobility aids. As if in a 90’s sitcom, another lady comes to my area and comments just how gorgeous my rings are and where did I get them. He smiled and said that was exactly what he was talking about. She didn’t ask “Oh, what’s wrong? What happened?”, she just gave a nice compliment.

Talking Medical Details

In his excitement, he started to ask about the more down and dirty details of my particular collection of hEDS symptoms. He quickly apologized, and said it wasn’t any of his business but I assured him I don’t mind at all. And though I have my days when I’m tired and irritated, that’s generally true. I like talking about it because I love helping people understand the uncommon.

When did I start showing symptoms? Did my pediatrician notice? When was I diagnosed? What co-morbid diseases do I have? Have there been any advancements? Who all do I have to see currently?

We even talked about the polyester ligament that I just got in my right ankle and how wonderful an advancement in medicine it is. He asked that I please pardon his questions, but in his 50 years of medicine, he’s never met someone like me. Read about them in medical texts, sure. But met one? And today he actually gets to meet a zebra!

The Shock of Meeting a Zebra Hits

They call us zebras because we’re not like your average patient. We deal with a near constant barrage of issues and complications. And though the conversation up to this point was full of light hearted discussion, he had stopped suddenly and looked at me with an expression of sympathy. He said he wanted to apologize. That all this time, we had been talking about the clinical side and I had been discussing all of this with a smiling face and chipper attitude. We were talking about some of the most painful aspects of daily life, and I was smiling and happily sharing.

He slowly changed from sympathy to a mix of surprise and concern. He said then that he wanted to thank me for sharing, but to let me know how deeply impressed he was with how I was handling my life in general. How admirable it was, because being a doctor, he has an idea of just how much I’ve had to deal with for so long. That for me to retain such a positive outlook on life through that all of that…was amazing.

Now, I don’t share because I want sympathy or congratulations. I share to educate. But that doesn’t take away from how nice it can be for someone like this gentleman, to be able to relate on some level and acknowledge just how much I’ve accomplished despite having such hurdles in my way. Especially because there have been several hurdles during this time of healing from the surgery that have been particularly trying.

So at the end, I made his day by letting him get to know a zebra, and he made mine by just appreciating me and my story.

Anxiety Lies

Anxiety stems from an important defense mechanism. When we’re in danger, what is commonly referred to as the fight or flight response kicks in. Trouble with anxiety…is almost anything can trigger that response. Though there are plenty of theories as to why the anxiety brain is so over-active, the bottom line is our anxiety disorder brain lies and says benign things are scary and we’re going to die.

Now, the hard part, is that if you’ve read the previous post…you know that there are a lot of things that we really DO have to concern ourselves with. Which just complicates the whole matter. I end up spending a lot of time in internal conversations with myself over whether something is a valid concern or anxiety taking a tantrum.

How Do You Have A Conversation With Your Anxiety?

Okay, so it might not be a conversation EXACTLY. It’s more a fast paced analyzing of what I’m feeling vs what is logical. It might look something like this, I’ll put the more emotional reaction in bold and my logic response in normal text:
OMG My foot is red around the stitches and it’s painful to step on now! Something is wrong!
Well, it’s only been a few weeks from surgery, and I DID walk on it yesterday
What if it’s infected? It totally could be infected right now
But…it’s not warm to the touch.
What if it’s a deep infection and hasn’t come all the way to the surface to feel warm yet?
But that…isn’t how infections work. If it was a deep infection, by the time it was red, it’d be inflamed, darker, more tender. I’d feel warmer.
You can’t trust your own judgement, what if you’re wrong?
Well, then I’ll call the surgeon. He did say to call if I’ve got concerns.
But what if he’s busy? And what if he didn’t really mean it? Can I justify calling him for just a little pain?
Okay, so how little is the pain really? Can I walk like I’m supposed to? *tries out again* Nope
What if you did something and destroyed all the work the surgery did?
Which is even more of a reason to call the surgeon, right?
But what if it’s normal healing and you’d be calling just to harass him?
It could be nerve pain, that’s what it was last time.
Which means you’d be BOTHERING him
Unless it’s not just nerve pain….
How could you let this happen. You probably overdid it and now not only are you bothering him but he’ll know it’s been ruined because of you.
Or, he could relieve my worry like he did last time. That is a possibility.
Or it could just confirm that you’ve gone through all this pain of surgery for nothing and now you’ve ruined your ankle
No….
No

NO

That’s enough. Get all the information about it. What kind of pain. How far it extends. Range of motion. Photo in case he wants it texted. If I upset him, I upset him. But better to know I checked.

And that was a short version of one morning I actually did call the doctor. The result was positive and he completely reassured me that it was really good that I called, but that’s not the point I hope to make here.

But Everyone Worries!

And that’s true! But the difference between someone that suffers from an anxiety disorder has an internal dialog they have to keep in check like that often. Remember earlier when I said it could take benign things and turn them terrifying? Surgery has a lot of concerns, and even more with EDS. But anxiety doesn’t just come about when it’s time to make you feel like a hypochondriac. It can show because of anything from a phone call to a bruise you don’t remember getting.

But stress makes any anxiety symptoms worse. It’s more than just internal dialog, it’s a fear response. Instead of just considering the emotional response dialog up there as words, consider it being felt as something worth being afraid over. Feeling as if you really did screw up everything beyond the point of repair despite any evidence to the contrary.

This can appear to someone on the outside as just being in a miserable mood and snapping, or being overly emotional at what looks like simple problems. Sometimes it appears as just being really emotionally needy and needing physical affection. It can even look like all the person does is talk about their problems and “negative” things.

I can’t speak for everyone of course, but try and keep in mind when things like that are viewed from the outside… There can be a storm raging on the inside that is threatening to take over. In situations like this we really need to learn self care.

When Self Care Can Trigger Anxiety

Sounds backwards, doesn’t it? But that’s the point. It’s an anxiety DISORDER and not just being nervous for logical reasons. Something like resting as much as the doctor told you to can make one’s anxiety skyrocket as if you were being chased by lions. OMG what will be people THINK?! You’re so lazy and worthless and not even trying!

What seems like an illogical internal conversation (and often is) send very real to someone in the throws of anxiety. What if I’ve not moved enough? I’m too much of a burden, I have to clean. I can’t ask anyone for help, they didn’t mean it when they offered. If I ask for help I’ll push people I love away from me! Everyone around me probably thinks I’m just being lazy. I know the doctor said put my foot up most of the day, but my coworkers are getting mad at me, so what if I try and work like normal and put it up with ice when I get home?

But you know what? Try and remember it doesn’t matter what others think. And it doesn’t matter what your anxiety thinks they’re going to think. What matters is that we all remember to take care of ourselves the best ways we can. To do things like call the doctors when we’re concerned or take a break when the pain gets to great. We need to remember that we’re important enough to deserve the best chance at proper healing. So what if Suzy in Payroll rolls her eyes at you. Suzy isn’t living your life so her opinion only matters as much as you allow it to. Suzy won’t have to cope if you’ve screwed something up by pushing when you should’ve taken a break… YOU will.

So please at least try to take a deep breath and take the moments you need for yourself.

In The Spirit of Self Care

Who doesn’t like chocolate and cheesecake? Click on the image below to get a recipe for a low carb, keto, gluten-free ZEBRA CHEESECAKE RECIPE! The recipe comes from another zebra and is to die for!

Recovering from surgery is taxing in the best of situations. Your body is diverting a lot of resources to the area that was worked on and, as in my case, is trying to decide whether to fight or accept the new pieces that were put in. But it works a bit different when you’ve got anxiety and EDS.

With all types of EDS, we’ve got to worry a lot more about our healing for a variety of reasons.

Stitch Rejection

Nobody reacts happily to stitches. However, we’re more likely to react to normal stitches as well as dissoluble ones. This goes for internal stitches as well as external. Part of it is because our skin has a tendency to be super stretchy, the other part is many of us have a cormorbid condition called MCAS that makes us more likely to have a new allergic reaction without warning.

Paper Scars

EDS is a collagen disorder, which means we don’t really heal well from deep incisions. So when your surgeon cuts the multiple layers of skin to do necessary work, a normal person’s body goes to work repairing the skin, sometimes a bit thicker than normal and leaving a thick layer of scar tissue. Ours? Imagine if you hired contractors to build a complex bridge but gave them the blueprints for a tree house. So when our bodies go to repair the skin, they’re doing it the best they can, but it ends up thin and fragile rather than stronger and thick. The scars often look and feel similar to wrinkled tissue paper…hence the term “paper scar”.

Healing Time

Just like with the paper scars, our bodies don’t always know how to heal properly. Using myself as an example, I’ve got a little bullet shaped screw inside my ankle called a subtalar artheoreisis. Once implanted, they’re not supposed to move once the initial healing stage of not walking around is over. I’ve got an amazing surgeon, followed orders, started walking a little bit with the assistance of a walker. Still erupted in pain one morning. After a few x-rays and several discussions where I was asked to feel areas and move in specific ways he made the conclusion that it moved. I asked him how and why and how do I prevent it next time??? “Honestly? It’s not supposed to move in the first place. So there’s not much you could have done to prevent it and not much to keep it from happening again expect take it slow for a few days. You EDS people are just weird sometimes. Your films look good and lets just hope it doesn’t happen again. This is just a minor setback.” It’s not incompetence on his part or pushing the limits or disobeying orders on my part. My ankle just tried to stage a coup and I thwarted it…for now…

Pain Management

Healing hurts…but so does every day life. Is this pain because of healing or is it because the temperature dropped an my Raynauds is sensitive? Who knows! Hope you’re comfortable with gambling because even an experienced surgeon can only give you their best guess.

Mobility Aids Can Hurt

Crutches, knee scooter, walkers, rollators…they can all be FANTASTIC! Unless you’ve got EDS and the pressure of crutches will sublux or dislocate your shoulders, wrists, and/or elbows. My knee scooter moves my patella and has subluxed my hip on several occasions. The walker aggravates my shoulders. So not only do you have to monitor what your healing is doing, but you’ve got to juggle all your other joints with the expertise of Cirque du Soleil performers.

Comorbid Complications

There’s a TON of comorbid conditions that can come with EDS. Something like Raynauds, where your internal temperature regulation is broken, can make icing a post surgical ankle exceptionally painful. IBS and chronic constipation can get worse with post surgical opiates and anesthesia recovery. Intestinal issues can also make getting the right nourishment for a healthy healing problematic. Allergies to adhesive can make bandaging uncomfortable at best.

Surgery is never easy

Even absolutely necessary surgery is a trauma on the body. Having EDS just means that we have to be extra careful and hyper aware of what our bodies are doing to make sure we heal in the best way possible. It makes daily activities more exhausting than normal, which makes us a bit more grumpy and edgy. So, we just ask that you take that into consideration when we talk about it often or request a bit more comfort than normal.