"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘awareness/research’

Rare Disease Day 2016

 

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Today is Rare Disease Day, with a focus on Making the Voice of Rare Diseases Heard.

Usually, I write a post on the theme because I feel strongly about this. Ironically, I am feeling overwhelmed by actually living with our allotment of rare diseases and just don’t have the brain power to write something brilliant.

I can share some links that will help you share some awareness on social media. Use your platform to share information because giving a voice to this cause is important. Make your voice heard and support the Rare Disease Community!

 

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What are you doing to promote awareness today? Leave a comment and share!

 

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A Letter To Emily’s Mom

This is a piece I wrote last year for the Our Stories of Strength anthology, Living with Ehlers-Danlos Syndrome. I am posting it here as a reminder to myself that we will get through our current struggles and as encouragement for all the moms out there who are facing a diagnosis and are scared to death. We will get through this together and I am thankful for everyone who has walked this journey with us.

 

Dear Emily’s Mom,

Everything is going to be okay. Really, it is.

Yes, I know Emily – your baby girl – has Ehlers-Danlos Syndrome and it seems like the end of the world. I know she is only 11 years old and she is losing everything that matters in her life and your heart is breaking for her and for yourself because your world has been unceremoniously turned upside down. Life as you knew it is a memory and a new life, an uncertain and daunting one, is looming.

Yes, I know she got EDS from her daddy and her brother has it too and you are thinking if only you had known when she was younger, maybe things wouldn’t have to be this bad for her. You are also feeling relief to finally have answers about all the strange symptoms she has had since she was a baby, while simultaneously knowing that relief is a bizarre emotion to be feeling with such a diagnosis.

Yes, I know you are terrified. I know you feel utterly unqualified to deal with this, guilty for not knowing sooner, and heartbroken to see your daughter suffering so. I know you can’t see where this path will lead and I know you hate not being in control.

Five years down the trail from where you sit now, broken and grieving at the beginning of the journey, I can see where you are going and where I have been. Which is why I can say, with certainty,  that everything is going to turn out fine. Truly it is.

Take a moment to breathe and absorb that truth. Everything is going to be okay.

That belief will be sorely tested in the days to come. You are going to have moments where you doubt, where you will not be able to see down the path you are on; moments where it won’t seem possible that the world will ever be right again. But, everything is going to be okay.

I promise.

Of course, “everything is going to be okay” doesn’t mean things will be easy or that events will fall out according to your liking. Spoiler Alert: Events will very rarely, if ever, fall out according to your liking. Honestly, what you think should happen is not always what needs to happen and that will be a hard lesson to learn… One of many hard lessons you will learn, I hate to say.

Somehow, though, even when things don’t go your way, things still turn out okay. When I say “everything will be okay”, what I mean is that, even in the most difficult circumstances, you will be able to honestly say ‘it is well with my soul’. You won’t get there over night, but you will get there.

Faith is at the heart of this journey and it will be your greatest weapon against all of the challenges and uncertainty you face. You will learn that you aren’t in control, no matter how much you want to be, and that you can either be driven crazy by that or simply believe God has more knowledge than you do so you can trust his plans for you. The circumstances you face are going to make you more vulnerable and more adrift than you ever have been and you will survive by leaning heavily on the promise in Romans that tells of how God is working to make all things – even EDS – good. What’s more, you will see that promise come true, time and time again. Soon, you will even come to see the journey as a gift.

Believe it or not, you are being given the amazing opportunity to become more…

More faithful. More patient. More compassionate. More real. More human. You will have the privilege of making friends and meeting people who you otherwise never would have met – a hidden world of people suffering from invisible, chronic illness will be revealed to you and you will be blessed by that revelation and by them.

You will learn the beauty of service: both serving the ones you love and being served by others who care about you. You will gain knowledge and have experiences that will shape you as a human being; a better human being than you were before. You will weep and laugh, pray and think, and learn and grow. It will be painful and profound, but you will find your purpose on this planet and you will grow in love and compassion.  This whole crazy awful business is a precious opportunity to evaluate your priorities, shore up relationships and get rid of all the unnecessary stuff in your life.

No, I know it doesn’t feel like an opportunity right now, it feels more like a punishment. But you aren’t being punished! Rain falls on the righteous and the unrighteous alike. You will witness God working through those bad things and transforming them into something beautiful. And, trust me, the beauty will come. Just watch for it. It will come in big, spectacular ways, in tiny, gentle whispers and though rainbows peeking through the storm clouds. It will come…

Now, I won’t lie…this journey you are on will not be easy. When I talk of the beauty to come, it might be hard to believe when the darkness is pressing in on all sides. Those moments are real and it is okay to despair, to grieve, to doubt – give yourself permission to feel whatever it is that you feel. You don’t have to always see the beauty of the journey – there are parts of it that are just plain hard. When things are rough, just cling to the hope that beauty will be coming during those dark times. That hope will be your anchor.

You are facing the fight of your life – there is no point in sugar coating it. From my vantage point, way down the road from where you are, I can look back and see the steep, rocky trail ahead of you, the pitfalls, the detours, the sleepless nights and the awful times when you are just going to have to sit tight and be patient. However, I can also see the molding of your character and the resilience that comes from the hard work of walking the path you are on; I can see the beauty being wrought from the ashes and the rainbows that have been scattered along the way.

From your vantage point, at the starting line of this marathon, you see only the unknown and it is terrifying. You have every right to be afraid. In fact, fear will be a tool to harness on your journey, but what you need to know is that fear, in the end, is not what will define your journey. Love is.

I know you will struggle to believe this in the beginning, but  the destination is worth the challenges of the journey. The journey will not destroy you. It will make you stronger than you ever thought you could be. You and yours will not only survive this journey – you will thrive.

Here’s another Spoiler Alert: Emily is alright. More than alright, in fact.

She is an amazing young lady. She is not defined nor defeated by her diagnosis. She has faced some pretty tough times and is a fierce fighter – you call her your hero and she has earned that title. And, tough as she is, she still has love and compassion aplenty. She is strong, smart, talented and funny. Your fears that she would not be able to withstand this challenge are completely unfounded. Just as your character is being shaped by this journey, so, too, is hers and, while you wish she could be trouble free, you know that is just the wishful thinking of a parent.  EDS is simply part of her life and she is learning to rise admirably to the challenges that she will face for the rest of her life.

Sure, there is the day-to-day EDS stuff to deal with – the dislocations, injuries, the pain, the headaches, the autonomic stuff. Unfortunately, those never go away. But, somehow, you both will adapt to all of that and learn to roll with it. Like I said, EDS does not define nor defeat her or you, for that matter.

You will find some good medical care along the way and you will find that willingness to think outside the box will serve you well. Family, friends, and faith will keep you strong. You will make mistakes but when you do you will learn from them and you will hone your knowledge to become a formidable advocate. And your daughter will learn how to advocate for herself from your example.

Long story short: you can do this.

I am still looking towards an unknown future so I can’t tell you how the journey ends. We have a long way to go and I have no crystal ball from here on out. What I can tell you, with confidence, is that, while I fully expect troubles because troubles are part of life,  I also have confidence that there will be rainbows that accompany the storms, weeping will turn to joy, God’s  mercies are new each morning and beauty will come from the ashes of the most difficult situation. So, whatever troubles are lurking around the next bend in the road, I know we will be alright.

And so will you.

Hang in there,

Beth (Emily’s Mom)

 

 

 

 

Nervember: CRPS Awareness Month

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November, er, Nervember, is nerve pain awareness month and CRPS is certainly a pain, so we are doing our part in raising awareness. Today, the first Monday of November, is Color the World Orange Day – a day to specifically raise awareness about CRPS/RSD. Orange is the awareness color of CRPS so I am wearing orange today, even though it is the one color I would be least likely to ever willingly wear. Funny side note: Emily has detested the wearing of zebra anything as EDS awareness, which is weird, because who doesn’t like zebra print? Emily, apparently. But, she likes orange much better than zebra stripes so I guess that is a silver lining with all of this. She finally has an awareness color she is ok with.

Anyway, as usual, I will be sharing information about CRPS on my facebook page and here. Sometimes I think about all I do with Facebook is raise awareness but I am grateful to have that opportunity. Because heaven knows people need to know about CRPS. EDS is genetic but anyone can develop CRPS from the most minor, trivial injury.

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So, while I am here, I will give you a little update on Em.

We recently saw Dr. Neilson (I plan on writing a post about some of the things we talked about – there were some things that might be of interest to anyone with EDS) and brought up the inordinately long wait to see the rheumatologist (when I made the appointment I was told the earliest she could be seen was January 29th which was insane considering this is an extremely time sensitive diagnosis). The good news was that a mistake was made in scheduling and we don’t have to wait until the end of January to be seen. The bad (frustrating, annoying, pull out my hair in disbelief) news was that we could have already been seen if they had scheduled it right in the first place. 😡

Moving on. We now have an appointment for November 19 and it can’t get here soon enough. If what she is experiencing is truly a full body CRPS spread (and I don’t think there is any other explanation), it is breathtakingly fast. If CRPS is like having a limb set on fire, what she is experiencing is a wild fire, eating up acreage at a frightening rate. I am trying to keep a timeline and a list of her symptoms as they pop up and we are trying to document the physical signs that we see. She has had some swelling but not much at this point and it is fairly subtle when it happens. Her hands and feet will turn bright red and shiny, then, when we try to take a picture, she moves and the color fades. But, I think it is important to document everything we can so we keep trying.

She is absolutely exhausted but is trying so hard to push through this and not give in. The symptoms she is experiencing are so frustrating: worsening brain fog, memory loss, insomnia, incredible pain and, unsurprisingly, irritability. November 19th can’t come soon enough, I tell you. Although, let’s be honest, there is no guarantee that appointment will yield any useful treatment. Which is daunting. But, I would rather face that possibility as soon as possible rather than wait until the end of January to find out. But, something has to be done. I have promised her that we will not stop until she has real treatment that brings her real relief.

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Why I Fight For Invisible Illness Awareness

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You would think it would be obvious to me, of all people and after all we have dealt with over the past 5 years. It should be obvious that you can’t ‘see’ an invisible illness, right?

EmilyAnd it is, of course. As a parent of a medically complex teenager who lives with Ehlers Danlos Syndrome and POTS and a host of other things that haven’t quite been given a label, I am too familiar with the concept that my kid is ill in ways that even the doctors can’t see. I have felt the questions behind the polite smiles that come after I have explained Emily’s medical issues, when that person catches sight of her smiling and laughing and looking oh-so-normal. I see the doubt that dawns when well meaning friends and family wonder if she is really quite as ill as I claim she is. Because, how can she smile, laugh, walk, play if she is really in so much pain?

I understand those doubts, even when I am annoyed by them. It is all part of the process of spreading awareness and educating people who are not trying to be mean but are facing the equivalent of a calculus equation in a social interaction. If you don’t live with chronic illness, you just don’t get it.  I understand that. I have no problem explaining it over and over and I have been a willing advocate from the moment we put a name to her symptoms.

And I have never once, not for a single moment on this journey of 5 years, doubted what I could not see. I have been bemused, but I have never doubted her experience. I think that is because it really isn’t invisible to me: I see the pasted-on smile, the pallor, the way the pain shadows her face as she tries to ignore it, the blank look and glassy eyes as she starts blacking out and I see her energy draining like a low battery as she fights to appear normal. It isn’t invisible to me, even though it is to everyone else. In fairness, I know what all of those signs will result in: utter exhaustion and perhaps days of recuperating from what any other teenager does all day long, every day. I do not doubt because I see it when others do not.

I get this no-man’s-land of invisible illness, really I do.

But, even a veteran like myself can be reminded how insidious these hidden conditions are in a simple, matter-of-fact conversation…

My daughter’s CRPS (Chronic Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy or RSD) has returned and with a vengeance that is frightening: it has spread to her whole body in a couple short months. If you are unfamiliar with CRPS/RSD, it typically appears after a minor injury or surgery and is extremely painful. It is the most painful condition known, rating a 46.5 on the McGill Pain Index, considerably above first time, unprepared childbirth at and cutting off a finger. Think filling your limb with lighter fluid and setting it on fire and it never burning itself out. There are some visible symptoms that go along with it but, of course, you cannot see the horrific pain.

She had this once before in her foot 5 years ago. It was excruciating. She couldn’t bear to wear a sock or shoe and couldn’t walk on it. It actually put her in a wheelchair. The whole concept of chronic pain was relatively new to her then. She had been in a lot of pain from EDS for months but the CRPS pain was so extreme and so horrible that she couldn’t ignore it.

Fast forward to this new round of torture. I believe her. 100%. I am her biggest advocate and she has my solemn promise that I will never stop seeking treatment for her. But, it occurred to me that, perhaps, compared to the first round of CRPS, this round was just very unpleasant because it was all over, instead of just in her foot. Because she informs me of how things feel but she doesn’t complain. She doesn’t cry or scream or shout about it. She pushes through, knowing that she can’t give in to the pain and that staying in bed is the worst thing she can do. In short, she doesn’t show her pain, even to me. When she talks about it, it is typically very factual, informative and brief.

So, I asked her, the other day, as we walked together, “Is this pain less than it was the first time?” I thought I knew the answer because, logically it had to be, right? And, honestly, because I wanted it to be so.

She thought a minute, shrugged her shoulder and quietly said, “It’s worse.” She walked on, leaving me stuttering and a bit flabbergasted. I caught up with her and said, ‘But, last time, you couldn’t walk. You couldn’t stand a shoe or even a sock on your foot.” I remember staring dumbly at her shoe encased foot, as I said this, trying to make my brain understand. Again, she just shrugged and nodded and walked on.

And my brain caught up. She has endured so much pain over the past few years. It has been managed but it never goes away. When you live with constant, severe chronic pain, you learn to bear the unbearable. That first round of CRPS was unbearable to her, but, now, years later, she is prepared to face much worse, stoically and with a poise that belies her age and situation. So, the answer is, of course, yes, it is worse. Yes, she can wear a shoe and walk, because she has learned that she has too. She understands that this pain is lying to her: it is not a signal of damage so she must push through if she wants to defeat it.

It doesn’t matter if I can see it or if anyone else can see it. It is real.

But, if I, her biggest believer and advocate, can be confused and deceived by the false appearance of ‘”normal”, of course, other people – friends, family, doctors, therapists – can be deceived as well. Some disabilities are invisible and they are no less real because someone else can’t see the pain. People like Emily hide their pain because if they wore it on their sleeves the weight of it would make them collapse. People like Emily smile to shield their loved ones from the knowledge that they suffer profoundly. People like Emily push through because they have no choice and they push through even though it is agonizing. People like Emily bear the unbearable with little help from medicine or society.

This is why I fight for awareness. Because even when you live with it, it isn’t easy to understand.

Our Stories of Strength

My copy of Our Stories of Strength: Living with Ehlers Danlos Syndrome was delivered yesterday. We are pretty excited about it around here. 🙂

 

Our Stories of Strength: Living with Ehlers Danlos Syndrome

My submission, A Letter to Emily’s Mom, is on page 163.

Whether you purchase a paperback copy or a kindle version, I highly recommend this book.

In addition to stories from EDSers of all ages, there is poetry, photos and artwork. I have to say, this book, and the anthologies that are to follow, are important. Books like this are critical for the EDS population: to uplift, encourage and to communicate that you are not alone. As I told my daughter: Read this. It was written for you.

Kudos to Mysti and Kendra for compiling a wonderful book that is a gift to the EDS community. The kindle version is handy to have on hand and the print version is beautiful – perfect for leaving on the coffee table as a conversation starter. I know we will read it, share it, and keep it on hand as a tool for helping raise awareness of what life with EDS is like.

Both the print version ($19.99) and the kindle version ($9.99) are available on Amazon.

I also want to say a word of appreciation to everyone who contributed to this book: the stories are beautiful and sad and touching and uplifting and, most of all, real. Thanks to everyone who put their hearts out there for the cause of reaching out to fellow EDSers. The result is amazing.

(If you are interested in contributing to upcoming anthologies, head over to ourstoriesofstrength.com  and see which books are scheduled for release and get information about submissions. You can also like their Facebook page and keep up-to-date on their news.)

Back again to share…

It has been way too long since I posted: all is well, just busy and the usual stuff gets in the way. I would apologize but you have heard it before… ok, I can’t not say it: I am sorry! 😦

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It is May, of course – and that means Ehlers Danlos Awareness Month. I hope you are doing something, however small an action it may be, to promote awareness in your little corner of the world. Posting on social media is always a winner but there are all kinds of things that can be done.  Awareness is so important, as you all know, in making living with EDS a little easier. More awareness means more people knowing they have it,better treatment,more research being done and more understanding. I am going to be posting more frequently here and on FB (cross my heart!) during May and hopefully thereafter!

In the meantime, I wanted to share this very exciting, important development with you:

An anthology of EDS stories, Our Stories of Strength: Living With Ehlers Danlos Syndrome will be available this month: the Kindle version is now available for pre-order and will be published on May 8th on the Amazon Kindle Store. A printed table-top version will be available as well. Our SOS Media, created by Misti Reutlinger and Kendra Neilson Myles, is debuting their first anthology, the first of many to come. They have worked long and hard to compile more than 50 stories from people living with EDS and one of them is mine.

My submission is “A Letter to Emily’s Mom”, addressed to myself at the beginning of this journey. I am very excited to read the other stories and for Emily to read them as well.

I think it is wonderful that the EDS community will have such a collection of stories to encourage, uplift and to share. This will be something you can read and share with others: this book will be a wonderful way to raise awareness outside the EDS community and help friends and family understand the journey, as well as aid you on your own journey. I firmly believe there is nothing quite like knowing you are not alone when you are facing something like EDS.

 

 

 

Here is their Facebook page Go look and like them!

Here they are on Twitter Follow them! #OurStoriesofStrength

Here is a link to their website They are calling for submissions for future books, so have a look and consider sharing your own story.

If you are thinking, ‘that is lovely, but I don’t have a Kindle so how can I read it?’ On the amazon page, there is a link (top of the page, right below the title of the book) to get the free Kindle app, so you can read Kindle books on your smart phone, tablet or computer – you don’t have to have a Kindle to read this book! (All you have to do is supply your email or phone number and Amazon will send you a link for the app. Easy Peasy. You still have to buy the book, of course, but the app is free.)

I will share further updates here and I hope you will support these two ladies, fellow EDSers, in this worthy endeavor!

 

 

 

 

Day-by-Day, Hand-in-Hand

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It is February 28th and that means it is Rare Disease Day again. This is the eighth year for this global recognition of living with rare disease and my 4th blog post about it. Honestly, there is something about writing about this topic again, that is somehow a little discouraging.

But, that is our reality and what life with a rare disease is like. Ehlers Danlos is not something that my family will ever get over. It will always be with us. Even when it is out of sight, it is always lurking – an unwelcome stalker in our lives. There will never be a time when EDS is not part of our lives. So, yeah, that thought is a little discouraging, to say the least.

Which, I suppose, is the entire purpose of having a day to shine a light on the hidden population of people living with conditions largely unknown to both the general public and even many doctors. The slogan this year is Day-by-Day, Hand-in-Hand which I think is particularly apt. It really is the secret to successfully managing life with a rare disease (or two or three).

The only way to manage the reality of living with rare, chronic, invisible illness, is to take it day-by-day: one day at a time, one step at a time. If you fix your eyes on the horizon, way down the road you are traveling, it is overwhelming. It seems like an utterly unmanageable task when you look too far ahead. But, if you focus just on today, on the here and now and can  take the journey day-by-day, it is manageable.

And, although the journey is a lonely one, it is comforting to know that we are not alone. There are thousands (if not millions) of people living with EDS alone, and millions more living with the thousands of rare diseases. ‘Rare’ does not need to mean alone and, although the conditions we may be living with may be exotic or uncommon, when one can see the millions of people who share the designation of ‘rare’ it becomes obvious that we are part of a huge family that reaches across the globe. We all walk hand-in-hand on this journey we are on and that knowledge makes the journey a little more bearable.

I, personally, count it a privilege to be part of this worldwide community and to have met the amazing people I have met on this journey. The best things in this world come down to relationships and it is our relationships with others like us that lead to a better quality of life – to thriving instead of just surviving. They lead to better treatment and more understanding.

It is not easy, being a zebra in a world of horses but being part of a herd of zebras does lighten the load and I am thankful for all of you!

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