Getting Creative in Order to Minimize Pain: An Orchard Corset Review

This is my review of the corset that I recently got from Orchard Corset, as well as my thoughts and experience in dealing with the company itself.

Disclaimer: A month or two ago, I contacted Orchard Corset explaining in detail my interest in trying one of their corsets (for the reasons that I write about below), and they very kindly agreed to provide me with one (free of charge), in exchange for my feedback on this particular issues. They also agreed to allow me to document their product and the results—honestly, whether good or bad—for others in similar situations.

So, I want to thank them, as it’s not often that a company is interested in the way in which their product may benefit, or be utilized by, someone with a rare disorder, and I really appreciate the genuine interest they showed. I also appreciate them agreeing to allow me to write an honest review of my experience with it and them on this site.

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As one might imagine, adequately dealing with a disorder that potentially impacts literally every inch of the body in one way or another, can become astonishingly expensive. Proper splinting or bracing with connective tissue disorders can go a long way to helping reinforce faulty tissue and prevent further joint damage. The more something subluxates or dislocates, the more unstable the tissue holding the joint in place becomes, and the more likely it will be to do so in the future. Thus, prevention of this stretching of the tissues—the earlier the better—can be key to keeping the joints stable, and minimizing pain.

Medical braces are extremely expensive however, and depending on where you live, they’re often not included in medical insurance plans. Finger ring splints alone can cost $40.00 per finger, with longer lasting materials potentially increasing the price dramatically from there. Like many other people, I’m unable to afford properly fitted medical braces, despite their potential to help prevent—or at least decrease—endless pain and problems down the line. In particular, I could likely see the most immediate and life-improving difference from this with some of my spine and rib issues. Specifically, a brace like this could help compress and reinforce my very easily dislocated ribs (maybe not the very top ones, but the lower ones that cause the most pain and are the most unstable). It could also help support and straighten my spine, which already has numerous painful, degenerative problems—the worst of which are in the lumbar region. It could also help support my spine enough to largely correct my posture, which is usually very hard to do on my own.

With all of that in mind, I’ve spent the past few years looking at corsets as an alternative, hoping that they might act as a more reasonably priced substitute. Unfortunately, because I live in such a small town I’ve had no choice but to look online, and the first few that I tried were either too cheap and very poorly made or just ill-fitting. Eventually the numerous disappointments started to add up, as did the combined price of them, to the point that I wasn’t able to keep trying.

Recently though, I decided to look again, just for the hell of it. The first company that came up was the aforementioned Orchard Corset. From there, I started to really look into them—so that I wouldn’t end up making a mistake again—and everything that I found suggested that this would be the time that everything worked out. When you’re looking for something online, you’re forced to rely entirely on the information that the company or store that you’re dealing with has provided. On top of that, there are a lot of things that can factor into a corset in particular; finding the right one and using it properly isn’t as simple as looking for clothes. It can feel overwhelming at first for a newcomer like me: trying to find the right type and style, taking your measurements properly, making sure you know how to properly look after it, or even put it on—it’s a lot to take in.

I was immediately impressed when I saw that Orchard Corset has a blog with numerous different categories, where they’ve already answered every question you might ever need or want to ask. In addition, for those who do better with visual or verbal direction, they also have a YouTube channel where they’re on episode 89 of corset Q&A, demonstrating everything from how to accurately get your measurements depending on your unique body type, to whether it’s okay to sleep in your corset (and 87 other things!). They also keep a very open dialogue with their customers (a newer experience for me) and seem very dedicated to what they’re doing, which instills a lot of confidence for someone who’s in relatively uncharted waters as far as personal experience with the subject goes.

Having said all of that, here’s my personal—and honest—experience with the corset itself. To start with, they helped me find the corset that seemed the best suited for the purpose that I wanted it for: the Steel-Boned Longline Underbust Satin Corset w/ Hip Ties (CS-426)—(pictured above). I’ve spent the last month trying it out and getting used to it, which has been a lot less difficult than I was imagining it would be. Aside from the very first day (where it felt, understandably, a bit strange and restricting), I’ve found that I can quite easily wear it for hours at a time (most of the time, pain allowing), which surprised me given the severity of my pain issues. It seems to be made very well and does it’s job perfectly. The material it’s made from has also been easy to wear and hasn’t caused my skin any discomfort thus far, despite how tightly it’s pressed against it, though I do prefer to wear it over a thin shirt in any case. 

Overall I’ve been really happy with the results so far. Obviously my underlying pain issues are still going to be there, but it seems to both compress and help stabilize my lower ribs without being painful, as well as adjusting the alignment of my spine to give it a bit of a break when needed. I’m able to get it on by myself with relative ease which was something that I was initially concerned about. Their recommendation that I try a corset with hip ties has also proven to be an added plus, as it’s allowed for that extra little bit of adjustment. 

In conclusion, I can say definitively—and with ease—that I would recommend anyone else dealing with similar issues, who’s unable to afford custom medical braces, try one of these corsets. I would also happily recommend doing so through Orchard Corset specifically, as they’re by far the best corset company I’ve dealt with in regards to customer service, expertise and the quality of their corsets themselves. I’m really happy that this is an option that’s available in cases like mine and that I was finally able to find one that actually made a positive difference.

Better late than never.

Apparently the writer of this blog has fallen off of the planet altogether. Or, at least that’s what it may have seemed like after over 18 months of complete radio silence from me.

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Things can change very quickly when you’re living with a chronic, degenerative disorder, and when they do writing updates about it (on the blog you chose to start specifically for that purpose, mind you) can rapidly evolve into a fairly daunting task. My disorder’s rare and complicated and it can drastically change how my body reacts to even the most routine of medical interventions and procedures, so explaining any new developments in it’s progression can often require that I take many branching, long-winded detours into explaining all of the relevant factors involved. So, inevitably I procrastinate writing the update, all the while my illness continues to throw new complications and side effects at me, adding to that ever-expanding list of what needs updating, and so on.

Fortunately for me, in the grand scheme of this thing called life the difficulty with which I maintain this blog – that I elected to do in the first place – is about as trivial an issue as it gets. Still, that’s how it might just end up that before you know it it’s been a year and a half since your last update, instead of the week or two that you had planned on making it to begin with. Good job Katie.

The other reason that I found it difficult to commit to writing was the severity of the effects that my disorder was (and  often still is) having on me over this past year. This was both because it’s difficult to think and write when you’re very ill, but also because this was a dark and frightening time for me and I’d been stubbornly hung up on wanting to write some posts that were lighter in tone after the more serious ones that I’d been churning out since my eye started having problems again. I worried that people may not want to check in anymore if the tone of the blog seemed constantly dark and dire (apparently I figured people would prefer to check in and read absolutely nothing, instead). But, avoiding the worst of my disorder goes against one of the core things that I’d set out to do with this site, which was to write about the reality of my illness. Not how I wish it was, or how I want others to think it is, but how it actually is, even when that means that the tone of my writing will at times be dark and depressing.

In all honesty though, I do apologize for disappearing without so much as a word for such a long time. Luckily for me, the most serious consequences of that would likely have consisted of a simple thought here or there about where the Tissue Tales girl may have gone off to, or whether she’ll ever post again. That being said, I received a number of really kind and much appreciated emails from some of you, who were just checking in or saying hi, and I thank you very much for that. It’s nice to be thought of once in a while and the support that writing here has afforded me from and through all of you guys has been incredible and deeply cherished. There is such a sense of understanding and caring from the individuals and groups that I have been fortunate enough to have been introduced to through this blog, and I do miss it immensely when I’m struggling or away for very long.

So much has gone on since my last proper update that I’ve been wanting to vent about and share with you; starting with what has essentially been the catalyst of everything that’s gone on in the last year – my stay in the hospital – and the complications that lead to it in the first place. That’s the first and lengthiest thing that my update needs to cover, so from here on out I’ll be working on posting that, and afterwards some of the other things that have gone on.

Once I’ve more or less filled in all of the gaps of the past 18 or so months then hopefully I can get back into the routine of blogging regularly again. I have desperately missed this, and all of you, that’s for sure. For those of you that are still here after all this time: thank you so much for sticking around, I really appreciate your patience and continued support. You’re fantastic, as always.

– Katie

Talk About Your Medicines

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As I mentioned in my last post, I was asked by the American Recall Center to participate in their November medication-awareness campaign. For their own awareness article they’ve written specifically about the oral anticoagulant Xarelto and some of the dangerous side effects that have been recently linked to it. To read that article click here.

As someone with an incurable illness, medication – like it or not – is, and always will be, part of my everyday life. It goes hand in hand with the quality of my life and has the power to hugely impact how I feel from one minute to the next. While I definitely wish that there wasn’t a need to be on it all of the time, there is, and that’s the reality of being chronically ill. So, here’s a bit about my personal experiences with medications.

Before I had even gotten the correct diagnosis (at about 15), I had been tried on so many more medications than I can accurately remember now. And, as is the way it often goes, virtually every one of those was ineffective or unpleasant. Some ranged from simply not working for what it was prescribed for, to being debilitating or landing me in the ER. Most of the medications I’ve been tried on thus-far have been to counteract two of the most difficult aspects of my illness: insomnia to an often extreme degree, and chronic pain. Sadly, these are two things that are very complex to treat. There’s not one simply safe, fix-all pill for either.

As with most medications, you have to weigh the benefit against the risks and decide whether it’s worth it or not. You also need a doctor who’s willing to help you find what works best for you in your unique situation. I’ve always been really disciplined with medications for both sleep and pain. I’ve always made sure to only ever use them when absolutely necessary and have kept myself thoroughly educated about the numerous downfalls and dangers of both. When my pain did eventually become crippling enough that it was necessary to have round-the-clock pain medication in order to cope with it, I found it really hard to come to terms with. I never wanted to be on that kind of medication for the rest of my life. Having to take that step made me feel weak, even though in reality by normal pain standards, my levels of pain were still at a fairly extreme level all of the time. Aside from the physical consequences there’s also a great deal of stigma and ignorance surrounding pain medication, even when it’s being used appropriately and solely for pain.

My opiate medication’s side effects are quite limited overall compared to the other classes of medications I’ve been on, but it’s still not without it’s pitfalls. For instance, when used long-term your body’s natural pain-killers forget how to do their job properly. Your body also eventually adjusts to the medication and starts to need more of it in order for it to keep working on your pain. This is called “tolerance” and is an unavoidable side effect of opiate medications when needed for an extended amount of time. Opiates can also cause nasty “rebound” headaches in many people when used for more than a few days in a row. And while it’s been proven that people who suffer from chronic pain are generally much less likely to become addicted to pain medications than others (for various physiological and psychological reasons) it’s still a risk and must be taken seriously. I wrote about all of these things a few years ago in this post.

It’s been just over a year now since I was put on a consistent and constant dose of pain medication, and while it’s made my otherwise crippling pain bearable, it hasn’t made it disappear and it hasn’t been without it’s consequences. I still struggle with my pain to some degree 24/7 and most likely always will – there’s just no simple fix for that. Still, I am extremely grateful that this has been available to me, especially knowing that in many countries and situations it wouldn’t be. I can’t even imagine being able to handle that kind of pain at all never mind being able to find any enjoyment in life with it.

Sleep medication has always been difficult as well. There’s a viscous circle that having both insomnia and chronic pain results in. I often can’t sleep because of my pain levels, which keeps my body from getting any rest or break, which in turn causes my pain levels to increase tremendously, again making sleep impossible, and so on. The medications I do use on occasion to help me fall or stay asleep often won’t work during bouts of my more extreme insomnia. They’ll often make me feel more tired, but still won’t allow me to sleep, which is horrible. Other times they’re a life-saver, allowing me to get some desperately needed rest.

I’ve been suffering from chronic headaches since I was a child, so many of the earlier medications that I was tried on (and there were many) were for this. These medications in particular were often horrible with their side effects. One of the worst side effect profiles I’ve ever seen, never mind only counting things that I’ve been on, was for a medication call Topomax or Topiramate. Topamax is primarily an anticonvulsant used in the treatment of epilepsy, but it’s been shown to improve migraines in some people. That’s why I was put on it about 3 or 4 years ago. I wasn’t made even remotely aware of the dangers of this medication and at the time had just assumed it was safe, otherwise my doctor wouldn’t risk putting me on it. I know that all medications have the potential for serious side effects, but despite the multitude of medications I’d been tried on up until this point, I had never even come close to experiencing effects as severe as the ones I had while on this.

Looking at the incredibly long list of serious and often permanently disabling or life-altering effects this medication can have, I can’t help but be angry that as a 16 year old I was put on it, without even a warning. At first, though it wasn’t helping my headaches things were generally going fine, but the longer I was on it the more symptoms I started experiencing and the more progressively severe they became. I had no idea that they were from the medication and because they were all neurological in nature I was terrified as to what was going on and why. The first thing that prompted me to start doing some research were eye tracers. I had assumed that because of my history with eye problems that it was just something else that was going wrong with them. While doing research on this symptom I was stunned to see the name of my medication come up as a common denominator, mentioned by about a dozen other people describing the exact same thing.

Other frightening side effects that I experienced while on this medication included nerve pain: I started getting these unpleasant electric shock sensations all over my body. Later I noticed this strong and unsettling pulse-like sensation in my stomach just above my belly button, which my doctor simply wrote off as anxiety. By far the scariest thing that I experienced was this sudden and extremely uncomfortable sensation throughout my body. For a moment it was like I couldn’t see or hear properly and then all of the sudden my legs went weak and I couldn’t think. I couldn’t even remember what I’d just been doing. The entire episode was brief but none-the-less terrifying. At the time I was sure that I must have just had some sort of mini-stroke. This was the final straw with this medication and without fail (thankfully) every single one of those symptoms disappeared for good once I had been weaned off of it (after doing some research and consulting my doctor).

Because everyone is so different, I do have to mention that overall my body has never tolerated medication very well. I often get the rarest of side effects, without the intended benefit. Because of this there are some medication classes that I can no longer be given at all. Two of which are SSRI’s and SNRI’s, which I had been tried on fairly early after my illness started effecting my day to day life. There are a few different reasons that these medications are prescribed in relation to chronic pain and illness. One is to help with any resulting anxiety or depression the illness may cause and the other is to help minimize the sensitization related effects that chronic pain has on the brain and body. See, when you’re in pain for an extended amount of time your brain begins over-firing pain signals. This is (as it’s been explained to me) largely because our bodies are not adapted to handle pain 24/7 – it’s unnatural – so what results is that our fight and flight response becomes heightened and overactive. So, while antidepressants won’t work on the root cause of your pain, they can sometimes help in calming or halting the amplification of the pain signals being fired out by your brain.

I’m not sure why, but early on when I tried various kinds of these particular medications I was able to tolerate them fairly well. I was never continued on them long-term due to their various moderate side effects, that weren’t worth living with because the medication wasn’t having it’s intended effect anyways. Eventually I went on a break for a year or two after being unable to find any that worked for me and being exhausted by the long process of searching for one year after year. The first medication that I tried when I was ready to start looking again was Cipralex. I had been on it for about two weeks and so far the only side effect of any note that I was experiencing was an upset stomach. But, out of the blue, I ended up with a very rare side effect known as urinary retention – the acute inability to urinate. I didn’t even know that was a thing and because I wasn’t really sure what was going on I just assumed that if I had to go desperately enough then eventually I would be able to – big mistake. I had purposefully been drinking a large amount of fluids thinking that if my bladder was full enough that I would simply and unavoidably have to go. Eventually, after not being able to for 17 hours despite trying for hours on end, it became clear that something was definitely wrong and I wasn’t going to be able to go at all. By then the pain had become so severe and unbearable that my mom had to rush me to the hospital where my bladder was immediately drained with a catheter. The nurse said that the bladder comfortably holds about 500 ml of urine and that by the time I’d gotten to the hospital mine contained 1200 ml. I was also told that I was lucky that no permanent damage had been done and that next time I should come in as soon as I know what’s happening (but they didn’t have to tell me twice!).

The doctor on call told me that it was undoubtedly from the medication and to stop taking it immediately (you’re usually supposed to be weaned off this type of medication for safety reasons). It took a little while for things to go back to normal entirely but luckily I didn’t end up having to go back to the hospital. My family doctor said I was the first person she had ever come across in her 20 years as a doctor that had suffered from that side effect. We assumed that it was just a severe reaction to that particular medication since I had been on several similar kinds before without that effect. Just to be on the safe side, the next time she tried me on that type of medication she decide to use the closely related SNRI class instead on an SSRI. Strangely, – after only two days this time instead of 2 weeks – this medication started having the same effect and I again ended up having to go to the hospital. This time, while my bladder was still working somewhat, it was becoming enough of a problem that I was unable to take any pain medication (they can also increase or even cause urinary retention) without it tipping it past the point of being manageable. Unfortunately, I happened to be in such an extreme amount of pain that day from a crippling migraine that I needed them to either try giving me a different type of pain medication or hooking me up to a catheter so I could safely take my own.

Again, I had to immediately stop taking the medication, but now we knew that for whatever reason I could no longer tolerate these types of pills at all. I don’t know what changed in the time that I stopped taking SSRIs and SNRIs to when I tried them again that made me unable to take them. I’ll probably never really know. I’m lucky that stopping them so suddenly didn’t cause any of the long term harm that it can. It’s frightening to think that just like that I could have ended up with another health problem on top of everything I was already struggling with that had necessitated the medication in the first place. My sharing these particularly negative experiences isn’t intended to make everyone afraid to take medication entirely. Everyone is different and we all react in our own unique ways to things. What may work miracles for one person may do the opposite to the next. It’s very much an often long, trial and error kind of process. I definitely understand how utterly defeating it can feel if you keep trying with no benefits to show for it. All I can really say is: try not to lose hope and keep trying for as long as you can. Keep informed: new things are always changing and being discovered and you never know what may be the answer for you.

One of the intentions I have in sharing these experiences is for people to hopefully realize that education is extremely important in regards to the medications you’re putting in your body. We so easily assume that our doctors know every side effect or interaction for every medication they place us on, when in reality that’s just simply impossible. There’s just far too many different kinds and specific variations in each individual circumstance. I’ve been prescribed medications many times that say specifically not to take them when suffering from some of the health problems that I’ve already been diagnosed with. I’ve also been prescribed medications that aren’t supposed to be taken with something else that I’m already taking. It’s definitely frightening and frustrating at times, but these occurrences are the reason that taking an invested interest in your own health – however you can – puts some of the control back in your hands and can make a huge difference. And while you always have to use the internet wisely and responsibly, we’re incredibly lucky that we live during a time where virtually any information imaginable is available to us with just a few clicks. This doesn’t mean that you should stop communicating with your doctor of course – you should always come to them about what you’ve learned and consult them before you stop taking a medication. Also, don’t hesitate to phone or go to your pharmacist with any questions or concerns that you may have. They are generally very knowledgeable and helpful when answering your questions.

Medications are often a very vital part of living as well as possible with a chronic illness. And while we can’t necessarily control whether or not we need to take it, we can control how much we know about it and what we choose to do with that knowledge.

Is this what you ordered, Sunny? by Aurelio Asiain

Do you need to take medication regularly? What have been your experiences – both good and bad – with it? Have you been able to find something that works well for you?

I’m Still Here

By Lukasz Szmigiel
It’s been a long time, hasn’t it? I never thought that I’d end up needing, or choosing, to step away from this blog for so long. I had come to rely on it so heavily to help me cope with the various aspects of living with a chronic illness, and it’s been so incredible to be able to vent on a platform that gives me access to so many wonderful, supportive and understanding people. I really have missed that, and all of you so very much.

I never intended for my hiatus to be so long, but the longer I stayed away the harder I found it to come back. So many difficult things have happened since I last wrote and I haven’t known where to start. While some of those difficult things have been to do with my illness, most of it involved my personal life. I’m so used to being able to honestly and openly talk about all of the difficult, painful things that my illness results in on this blog. But, when the hardest things that I was facing became within my personal life – where there’s the need to protect and respect the privacy of everyone else involved – I found it hard to work up the desire to post. That was what I wanted and needed to vent about the most, so instead of having to pretend that those things weren’t happening I ended up just preferring to stay silent entirely.

I do apologize and regret not letting everyone know where I’d been for so long and that I was alright – not that I’d expect people to be sitting there consumed by it, of course. But nonetheless, I think I owed it to you to have explained my absence after all of your continued support over the years. To those of you who sent me emails and messages asking if everything was alright, thank you so much. You never picture your absent having any impact or even being noticed, so, receiving these messages was really touching and appreciated.

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It will take me a few posts to explain a bit of what’s happened (medically) in the past 6 months, but I do intend to catch you all up very soon. But, first off, I was asked by the American Recall Center to participate in their November Awareness “Talk About Your Medicines” campaign, by writing a bit about my personal experiences with various medications. I’m really honored that they asked me to be involved and this is a really good thing for me to write about having been tried on so many different things since being diagnosed with my illness. That post will be published tomorrow. I invite any of you who’d like to participate to either leave a comment about your experiences – good or bad – or, if you’d like to guest post: email me at tissue.tales@hotmail.com.

I can hardly believe so much time has passed; the last 6 months seemed to have somehow gone by almost in the blink of an eye. Maybe it’s because so much has been going on. I’m really looking forward to picking up where I left off 6 months ago and I sincerely thank you all for sticking with me during the hiatus. You are, without fail, what makes this blog such a joy to keep.

'Til the Cows Come Home By Kenneth Thewissen

Much love to you all.

– Katie

There are days.

Broken Flower

There are days in life that have the potential to permanently alter the course of your future for the better; days that could make some of the things that you live with easier from that point onward; days with the ability to get the ball rolling towards some positive, long overdue change. Yes, there are days like that.

But sometimes those days instead end only with missed opportunity; another lengthy appointment with disappointment, and another added mark on your overflowing wall of let downs and discouragements. Those days that, instead of giving you a piece of your life back – no matter how small – end with you being left to go back and suffer endlessly, in the same painful reality, once again feeling defeated and abandoned by the only people with the power to truly make a difference in your life.

The 8 long months leading up to that day passed me by in slow succession: cloaked in a bleak and melancholy air that hung heavy over and all around me. The weeks were almost entirely marked only by the increasingly debilitating and all-consuming pain in my lower spine that brought about the need for that day in the first place. Things were consistently deteriorating right before my eyes, and I was frighteningly often struggling desperately just to pull myself out of bed each day.

While time passed and I waited, I forced my mind not to linger too long or too often on the possibilities of that coming day, which sadly – experience has taught me, over and over – would most likely end in the exact disappointment, frustration and – should I allow it – devastation, that it did. Or, worse than letting my mind focus on the fear of things ending badly, I couldn’t let the hope in. If you have hope it only hurts so much worse when that hope is shattered. I couldn’t take the crippling pain of getting your hopes up and then having them destroyed, on top of everything else.

But, I did get my hopes up a bit – I couldn’t help it, it’s all that I had to prop me up. And so, as hard as I tried not to let it, some hope did manage to find it’s way in. But, I think that was what had carried me these last months through all of the pain: that little bit of hope that maybe someone was about to help find a way to lessen it for the first time, and that maybe this person would finally be the one. My fears about hope ended up being perfectly reasonable in the end – despite not having all that much of it to begin with, it was still a devastating thing to have and then lose.

I’m back at home now, back to my reality, and that day has gone and passed. The pain continues on in the same ever-worsening way that it has for the past 10 years – exactly one half – of my life, while my body continues to fall apart in a constant string of new and unexpected ways. And that day is ever further behind me, without having given me anything to help carry me forward. And now? Sometimes, I don’t know how I’m going to be able to. But yet, somehow I always do.

Sorry it’s been so long again, things have been tough.
Lots of love to you all. ♥

-Katie

A guest post by Destiny

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“My name is Destiny, and I am 20 years old. I love Panda’s. I’m a pretty plain girl…I love the colors black and white! Oh yeah, I’m also dying. Yep, I’m 20, and I am dying. How wonderful, right?”

I was introduced to Destiny’s story and Facebook page a few months ago by a fellow EDS zebra. Destiny is the same age as me and has Ehlers-Danlos Syndrome Type 4 which is the vascular type. This is considered one of the most severe forms of EDS due to the extreme fragility of the blood vessels and organs that it involves, which can lead to the rupture and tearing of many of the body’s major organs and blood vessels. The first thing that I learned about Destiny was that she’s incredibly strong and brave. The second – which you’re about to see for yourself – was that she’s an amazing writer with a gift for helping her readers see things through her eyes. The above paragraph that she wrote, in my opinion, sums up the kind of person she is; despite everything she’s lived and is living through – which is more than anyone should ever have to endure – she’s kind, cheery, funny and optimistic. She’s stoic beyond belief and there’s such a warm bright light within her no matter what she faces. And, she was sweet enough to let me use the following post as a guest post on Tissue Tales.

Enter Destiny:

This day started out just like any other day. She woke up with only 20 minutes to spare, her alarm still ringing in her ears. She gently and quietly climbs down her bed, so as not to wake her slumbering roommates. She goes to the mirror and brushes her hair back into a ponytail when the world spins and tries to go black. Her cold, white hands cling to the futon as her heart pounded and the blood rushed everywhere but her head. The sparkles in front of her eyes began to lessen and the girl, with a face as pale as the moon pops her morning pills, downs a salt packet, and fills her cup with orange pedialite; flashing back to her days as a child, grabs her backpack, stands – slowly this time – and heads off to her first class of the morning. Her hands still shaking and her heart still racing.

She sits in her class with her heavy textbook on the table way in the back row. Listening to all the students talking about the parties of the night before, her mottled hands begin to warm up and she sips some more pedialite. The shaking begins to subside and she prepares herself for the next 2 hours. Her hands begin cramping an hour into the lecture as each second is another second of her body attacking itself. She puts her purple pencil down on her crisp white notebook for a break when suddenly the nausea hits. Deep inside her belly a heat hits her and it travels up to her head, which in turn fills with a pressure words cannot begin to describe. She grasps her desk tightly and tries to take a deep breath only to find her chest was too tight, she couldn’t breathe.

Her frantic green eyes searched around her for what to do. She noticed people were staring and their lips were moving but she couldn’t hear them. A hand on her leg, a feeling, someone can see something is wrong, she reaches for that hand, anything to keep her in the here and now, desperately trying to convey what is happening as she is a prisoner in her own body. She tries to move, and her dry, blue tinged lips try to form words when the pain rips through her chest and the world goes white.

Fast forward a few days later and the girl lies in a hospital bed with an icepack across her chest from a fractured sternum. The CPR done to save her life fractured her porcelain bones. Tears pour from her pale green eyes as she replays the words in her head again and again.”…too sick…medical leave….close call…can’t risk it…focus on yourself and family…you need to withdraw…”. On the bedside table lies a copy of the medical note from her team of doctors, a copy of a form she signed officially withdrawing her from college. On the bedside table lies a copy of all her hopes and dreams completely crushed by a disease no one has ever heard of.

This isn’t my best writing…but it is pieces from my last week in college before I was forced to withdraw due to my medical problems. Looking back, I agree it was the right decision, and I have accepted VEDS won that battle, but it still breaks my heart in half. School was an escape for me…even in Elementary. It was a place I could focus on something besides my disease and my pain. It was a place to express myself and learn who I was. In High school I was in so many activities, the honor roll, and was even teaching a class come senior year. School was my sanctuary…College became a more hectic, scary sanctuary. One that opened my world to limitless opportunities, all of which I wanted at one time…I loved the friends I made, the classes I took and all that I learned…and the main thing being to never give up.

My hopes and dreams are still on that bedside table. The travelling abroad, the tutor program, the German club, community choir, becoming a teacher or a psychologist, specializing in Autism…all of those are still on that table and never will I be able to pick those up, dust them off and hop back in….But with that loss comes growth.

My new dream: to raise awareness for rare diseases. To raise money for research. To find a doctor willing to do research on such a little known condition. To share my story and inspire others. To have my story reach as many people as possible…and eventually I’d like my dream to come true, true to the point that my slogan will no longer be needed. That “Awareness for a Cure” will not need to exist because people will have heard of Ehlers-Danlos type 1,2,3,4… KLS, Dysautonomia and the other rare diseases.

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If you’re as inspired as I am by Destiny and you’d like to let her know you can find her Facebook page here.

Thanks for sharing your story with us Destiny!

Marfact #21 and 22 + My lens journey: Part 2

In honor of Marfan Syndrome awareness month, here’s today’s Marfact (provided by the wonderful Marfan Foundation).

Marfact #21: People with Marfan syndrome are at an up to 250 times greater risk of aortic dissection than the general population.

Marfact #22: Marfan syndrome can affect many parts of the body, but has “variable expression,” so each person is affected differently, even in the same family. While there are features that are frequently seen in many people with the disorder (such as tall, thin stature, disproportionately long arms and legs), not all people exhibit these features.

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I’m actually going to be splitting this into 4 parts because of how long it actually is once I sit down to write it.

Part 1

About a week after my 16th birthday my life changed – and I will never mean this more literally – in the blink of an eye. Meaning that I blinked and all of a sudden the vision in my left eye was entirely blurry. I knew what had happened immediately: my vision was identical to when I had no lenses at all and would take off my glasses. My implant had dislocated and I was devastated. At the time we had been told that should anything ever happen to my lens implants that they would likely have to be removed and that would be that.

My eye surgeon wasn’t available for a week, and because of the risk of my lens implant lodging in my pupil and causing serious problems I had to spend that entire week sleeping practically upright to keep it from doing so. This coupled with thinking that I had just lost one of the most precious things I had, made it a pretty long and melancholy 7 days. To my enormous relief though, my eye surgeon decided to re-attach my lens instead of removing it. I wish that had been the end of it, but it wasn’t.

My eye healed quickly and very minimally painful as they always have, but once my vision began to come back I noticed that every time I moved my eye everything in my field of vision would bounce. Mom and I left Vancouver and made the 8 hour trip home hoping that as my eye continued to heal this would go away, but it didn’t. I went to my local optometrist for a post operative check and was told that the cause of the bouncy vision was “Floppy Iris Syndrome”. As far as he could tell my lens implant was reattached further back this time to help keep it from rubbing on my iris as it had before, but now it was too far back and not supporting my iris at all, causing it to “flop”.

6th Eye Surgery

My eyes a month and a half after surgery #5 and a day before surgery #6.

So, about a month and a half after surgery #5 – my eye red and still not fully healed – we headed back to Vancouver for another operation. This time it was decided that he would replace my lens entirely with a new one (a bigger and riskier surgery) and for the first time ever before an operation I felt dread. I was hoping that because he would be replacing my lens this time that things would be better but when I woke up my mom told me that it had been decided during surgery that my old lens would be reattached instead of replaced as it had last time. Aside from that, right away things felt different this time when I woke up than it ever had after the previous surgeries. And though it wasn’t unmanageable, my pain level was a lot higher than it had ever been following eye surgery.

It was the day after though, that I ended up going through one of the hardest things I’ve ever been through.

Marfact #17 and if I had known earlier.

In honor of Marfan Syndrome awareness month, here’s today’s Marfact (provided by the wonderful Marfan Foundation).

Marfact #17: People with Marfan syndrome should not play competitive or contact sports because of the effect on the fragile aorta, as well as the pressure they put on the fragile bones and joints

Visit www.marfan.org for more information.

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This is something that would have been different for me growing up, if I had gotten the diagnosis of Marfan Syndrome earlier in life. I loved sports in school and participated in any school sports team that I could. I also played a lot of games of dodge-ball that probably should have been avoided for someone with my tissue disorder.

Looking back on it, even without the diagnosis of Marfan Syndrome, my history of lens dislocation and implants should’ve taken things like dodgeball out of my physical education curriculum. But, even the eye surgeon who did all of my previous surgeries never suggested that I avoid sports, contact or otherwise in the long run.

I can remember getting hit in the head more than once with a dodge-ball or volleyball in school, and on one particularly rough occasion that it precipitated one of my earliest instances of Iritis. I think it was either later that night or the next day that the vision in one of my eyes began to cloud over and fill with thousands of tiny floating dots.

Obvious risks aside, because of how much I loved sports in school and how much they meant to me, I can’t help but be glad that I was able to participate in them growing up. Don’t get me wrong, if I had known the risks I wouldn’t have done it and I’m extremely thankful that nothing too bad came of it, but it was still nice while it lasted.

I do often wonder though, if those instances and injuries may have contributed to my lens implants dislocating later in life. Or even some of the particularly weak tissue I have in certain joints. It was right around when I started joining the school’s basketball and volleyball teams that my first tissue injury and chronic pain started (a painful ganglion in my left foot at 10). But I guess I’ll never know for certain how things would’ve or could’ve turned out under different circumstances.

Marfact #14 and MFS in my family.

In honor of Marfan Syndrome awareness month, here’s today’s Marfact (provided by the wonderful Marfan Foundation).

Marfact #14: About 75% of people with Marfan Syndrome inherited it from a parent; in the other cases, it was the result of a “spontaneous mutation”, meaning that it happened randomly.

My family and I always thought that I had gotten my tissue disorder spontaneously and not by inheriting it from a parent; but, as the years go by I often wonder if I may have inherited it from my mom. Throughout her life – especially into adulthood – she’s suffered from a lot of unexplained health and chronic pain issues and some of them – like her sporadic knee dislocations as a teenager – could very well be connective tissue disorder related problems. Because of this possibility and the serious dangers of unchecked heart issues in tissue disorders she did undergo an echo just to be safe – which thankfully came back fine. But, despite her heart and eyes being okay to date, I will always wonder if she has the same disorder as me.

No one else in my family has symptoms suggestive of a tissue disorder, so in any case it seems to have either started with me or my mom. That’s one reason I wish that my genetic test for Marfan Syndrome had come back positive: so that we could’ve then tested my mom for the same  gene mutation, and maybe finally given her some answers as to why she’s had so many health and pain problems. She’s gone more than long enough without getting any and I’d really like that to change. Not that I’d want her to have my disorder, but she’s dealing with chronic pain and health issues regardless and at least then we’d know why. ♥

Visit www.marfan.org for more information.

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Happy Valentines Day everyone. ♥

Much love to you all and thanks for checking in for another Marfact.

– Katie

Struggling & Taking Notes From an Oak

Note: this is a bit of an old post/journal entry, re-worked to explain how I’ve been feeling lately. I know I’ve been absent and as the title suggests; it’s because I’m struggling. With pain, with sleep, with figuring out my purpose in life.
That being said, I do miss you all dearly and hope to be back regularly soon. Don’t give up on me yet.

Much love to you all. ♥
-Katie

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Resilience is an intriguing thing. It can be exceedingly difficult to come by while simultaneously appearing in places – or people – you’d least expend to find it. The way I see it, there are two basic avenues to take when handling tragedy and hardship (though, many facets here and there and in between); you shut down, break down and never truly recover; or, you grieve, accept and move on. I’d like to say that I have always chosen the latter, but in all honesty, I often find myself stuck between the two; fighting to find a balance without falling into nothingness. This often leaves me suspended, neither shutting down or moving on. Sort of just drudging my way through life.

I find myself oddly nostalgic now-a-days, and I say oddly because I always pictured nostalgia and reminiscence to be had many years later in life, when so many things have happened and so much life has been lived. Yet, when so many of my peers are living the brightest days of their lives and finding their places in the world, I instead remain vastly lost and stunted, wrestling with myself daily for the will to keep fighting for a life that has taken me places I never, ever wanted to go. I have no plans in regards to my future, no idea which roads to turn down or even how to get to them. One thing I don’t plan on is feeling this way forever. I hope – in fact it may be the very thing keeping me sane – that eventually the bitterness I feel, the sadness and the hopelessness, will depart and leave me more able to live this life. The physical pain is debilitating in many ways and that’s not going to ever truly go away, but my emotional pain is just as, if not more so, crippling in nature.

It’s odd to be writing about myself in this way. Through my words I could come to recognize myself as some angry, bitter, miserable thing to be around but in truth that’s not what I’m like on the outside and not hardly entirely how I feel on the inside. I love, I laugh, I feel the joy when it’s there to feel – at least most of the time. And my internalization of my feelings – if you can even call it that once it’s been written and made public – is what allows me to do so. I can keep the bad to myself for the most part, while still being me to the best extent that I can manage.

You’d think that keeping so much to yourself would cause you to burst, and there may yet come a time that I can no longer keep these things in my head. And every once in a while the flood gates do begin to part and I’m no longer able to carry on as if nothing’s wrong. These are the rare occasions that I lose it. It being my reserve, and have a bit of a nervous breakdown. It always seems to happen the same way; a negative event will trigger it and once the tears begin flowing there’s no going back. I turn into this shattered, weak, shell of myself. Broken beyond what I feel is even remotely repairable. There’s no going back are the whispers of the thoughts that manage their way in through the grief, I can’t do this anymore. But, such is the intrigue of coping; once I’m able to pull myself at least adequately back together, things seem to hour-by-hour or day-by-day transform back to the way they have been, and I carry on.

“The strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun.”
– Napoleon Hill