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!

Brittany’s Story

I’m really excited today to feature a guest post by Brittany, an incredible young woman (and fellow Canadian!) who has Ehlers-Danlos Syndrome, in honor of National Pain Awareness Week. I was first connected with her through the amazing Sandy Smeenk of the ILC Foundation and have been lucky to have her in my life ever since. She does a lot for other people living with chronic pain and has been a deeply cherished source of support for me.

Brittany

My name is Brittany Crichton and I am 24 years old, living with Ehlers-Danlos Syndrome and the many other complications and side diseases that come along with it.

It’s hard to say how my pain started because I always remember it being there. I remember people always giving reasons for it like maybe it was from gymnastics, it’s just growing pains, etc. As I talk about the topic of pain with my friends I realize that I can’t remember a day that I’ve woken up and not been in pain, or had my pain level lower then an 8 out of 10. I can’t remember what my life use to be like, and it is sad that this has become the norm for me.

From the age of 18 my symptoms got progressively worse, and at the time we had no idea I had EDS. I went from hospital to hospital, doctor to doctor and had thousands of tests done only to be told they had no idea what was wrong. It was so hard trying to explain to doctors what I was feeling, and for them to brush me off or just send me to another doctor because they did not want to deal with it. Finally, at the age of 22 my family and I made our way down to the Mayo Clinic in Rochester Minnesota and was finally diagnosed with Ehlers Danlos Syndrome.

It is hard for people to manage my pain because I do not absorb pills like a normal person, so it takes a higher dose to make a dent and nothing makes an impact or is able to take the pain down. It was very hard work but I have finally learned to cope with my pain being at an 8 everyday thanks to physio and my naturalpath. When my pain does escalate that is when I have to go to the hospital to help get it under control.

My life has dramatically changed since I started getting more symptoms and the diagnosis of EDS. The life that I wanted isn’t the life that I can have. I wanted and had my dream career only to have it taken away. I cannot go out and go to a party with my friends without suffering major consequences for it. There are times when I think is this really my life, why am I still here living in a life like this? But then I stop and think, I am glad it is me and not anyone else in my family, or my friends because I know I can handle it.

At first I was seeing all of the negatives that came from this disease, but then I had to look at it from a different angle; look at the amazing people I’ve met from having this disease, people who have the same disease and can relate. I am making a difference in the next generation of children living with chronic pain and rare diseases, and if I didn’t have Ehlers who knows who would be doing those things for these kids. EDS has changed my life but it’s not all bad. That is why I started my own website to show that; yes, even though I’m living with this painful disease, there are good things that can come from all of the bad if you look at it from a different angle.

Peer support is very important and I am getting in contact with people all over the world and it’s amazing. I am so thankful for that, and thankful because I would have never have been in contact with Katie Robertson otherwise.

So remember on those painful days reach out to others who feel the same way and who are going through the same, because we are all here for each other.

Click here to visit Brittany's website.

You can visit Brittany’s website here and follow her journey through her blog here.

Allergic to Life: a guest post by Kathryn

Hi everyone! For this post I’m thrilled to announce that Kathryn Chastain Treat who blogs over at Allergic to Life will be guest posting as part of her Book blog Tour!

Kathryn and I have been mutually following one another’s blogs for some time now and I’m super excited for her to share a bit of her story with you all.

Before the beginning of the guest post, here’s an introduction to her book:

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Imagine that the very food you eat and the beautiful carpet on your floors start to make you feel violently ill. Your contact lenses cause your eyes to burn and water uncontrollably. Trace amounts of mold on other people’s clothing cause you to become unable to hold a thought or get it from your brain to your mouth during an everyday conversation.

The life you once knew is gone and you have become a prisoner of unexplainable and severe allergies and sensitivities. In this new life you can no longer shop or visit friends in their homes because there are too many chemicals and fragrances there. You become plagued by one mystery infection after another and no doctor or specialist seems to be able to give you any explanation of what’s causing your terrifying symptoms. Depression sets in and becomes your constant companion as you try to cope with the stress of being sick and of struggling to live within your new-found limitations.

 “Allergic to Life: My Battle for Survival, Courage and Hope” is the story of one woman’s journey through a battle to reclaim her life and overcome depression caused by an exposure to toxic mold in her workplace.

Enter Kathryn:

I would like to thank Katie for hosting my book, “Allergic to Life: My Battle for Survival, Courage, and Hope”, on her blog as part of it’s first ever book blog tour.

Allergic to Life is my story of a journey through a battle to reclaim my life and overcome depression caused by a workplace exposure to mold. I suffered infection after infection as we tried desperately to find the cause and treatment. Writing in my journal during the many nights when I was alone and couldn’t sleep, helped me.

It’s 3:41 in the morning and I can’t stop crying. I am hurting so much. It makes my chest hurt to cry but I can’t help it. I am trying to be strong but it is sooo hard. My heart is breaking! I am missing out on everything. I am feeling so angry and alone. I want Rick here to hold me. I am never going to be normal again. I want to disappear and forget the treatments. I would run away and disappear! I want to live, but not like this! I want the world to hear our stories. Not just mine. God grant me the strength to carry on!!

During those long and lonely nights I poured my heart out into my journal. I couldn’t burden my family and friends with all that I was going through when we were miles apart from each other. When I couldn’t sleep I wrote until the tears stopped flowing and I could finally fall asleep. During one of those late nights with my journal propped in my lap, I began writing about the loss of my identity. I am including an excerpt from the poem.

WHO AM I?

Who Am I?
Stripped of all the things
that were once me
No more contacts—I now
have the weight of my glasses on
a face that always hurts

Who Am I?
My hair is streaked with gray
where glorious color once was
My cheeks are pale where
once the glow of a soft
blush warmed them

Who Am I?
The mother I once was who could do things
for her daughters can now barely do
for herself
The wife and helpmate can
hardly help herself

Who Am I?
I am the one who hides behind the mask—
not revealing my from or smile
The one people look at with pity and
misunderstanding

Who Am I?
I am still be but in a
different wrapper
The one who will come out of this cocoon—
spread her wings and fly
The one who will look different on the outside
but not on the inside

I am thankful that depression and anger are no longer my constant and daily companions. My life is still a struggle but I am learning to be okay with who I am and to find happiness within the boundaries of my new-found life.

In celebration of my life and the completion of Allergic to Life, I am offering a giveaway of three autographed books through rafflecopter at the end of the blog tour.

Allergic to life is available at Barnes and Noble and Amazon (prices vary). Autographed copies (US & Canada Only) will be available on my website.

You can follow me on my blog, on my Facebook page, on twitter, and LinkedIn.

About the Author
Author Photo2Kathryn was a vibrant and active 44-year-old stay-at-home mother of two when she decided to venture back into the workplace. Though she had been out of the workforce for 18 years, Kathryn had always been very active in community events – PTA, school board and the local 4-H club – and was always the first to volunteer to help out friends or family.
Little did she realize that this opportunity for professional growth and financial independence would force her through a never ending series of battles with the medical and legal community, make her a prisoner in her own home, and mire her in severe depression. After workplace exposure to mold caused severe immune system dysfunction, Kathryn’s world turned upside down and nothing would ever be the same. She was forced to give up her most treasured possessions and was no longer able to be the active person she always had been. Relationships were tested and many did not survive. Defeat always seemed close at hand as illness thrust her into a battle not only for independence, but for her life.
Kathryn’s story of self-doubt, loss of identity, and the pain of skepticism – from the medical and legal profession – is a heart-wrenching journey of endurance, hope and hard-won triumph. Her experience with mold exposure gives her a unique perspective on the physical as and emotional effects of mold exposure. Read her story and learn how she was able to overcome these many obstacles to become an advocate for her own health.