I have a rare genetic disease called Ehlers-Danlos Syndrome. It’s always difficult to explain what this means on a day to day basis. Suffice it to say that I am the proud owner of a stable full of odd and quirky symptoms and complications that has had the unexpected effect of allowing me to certainly live in interesting times. Time for a few demographics: I’m 31, married, live in Wiltshire (in the UK), have a degree in psychology, own a cat and being sick is currently a full-time occupation.
My hobbies and interests used to be more active and outdoorsy, but these days I’m settling in for a safer alternatives – blogging, reading, audio books, music, gaming and these are all things I have a tendency to blog about. Life presents some interesting challenges for me and finding new ways of overcoming these are important. My life continues to be slightly off the beaten track. This blog is more than anything my attempt to answer the question I am asked, and sometimes not asked but definitely implied, most frequently: “What’s it like…?” It’s a question that deserves an answer.
Chris
Chris, my husband, is the behind-the-scenes person. He fixes my spelling and grammar errors, comes up with ideas for posts that I can write and makes sure that a post from the draft section makes it onto the site on days where I am too unwell to write or post. He’s a techie with a passion for all things sci-fi/fantasy. Chris lured me into World of Warcraft which is still a fun and challenging hobby we both enjoy.
I love your blog title, and look forward to reading about how you deal with your challenges.
Comment by Carol — Sunday, 8 February 2009 @ 15:30
Thanks, Carol.
Comment by Lileya — Sunday, 8 February 2009 @ 20:47
Hi there,
Great blog you’ve created here. WoW Insider would love to talk with you more about your experiences in WoW. Please contact me at the email in my comment registration if you’d be open to chatting more about how WoW is intersecting with your life these days.
Best ~
Lisa P.
Contributing editor
WoW Insider
Comment by Lisa — Tuesday, 24 March 2009 @ 21:55
Read about you on wowinsider. I just… admire you. And for Chris. Your a damn nice guy m8. Thumbs up you both :).
Comment by Luc — Wednesday, 22 April 2009 @ 01:55
Truly you are the strongest person I have ever heard of. To get through an ordeal like this and live as active a life as you can is one thing, but to pick up something entirely new like WoW is amazing. Only another WoW player can appreciate how complicated it can be to pick up and be good at WoW. I feel like I;m spoiled because I don’t know anyone close ot being in your condition nor do I have anything close so I feel like I’ve had life too easy. You are a hero to me. Cheers to you.
A fellow WoW player,
Sean
Comment by Sean — Wednesday, 22 April 2009 @ 04:50
Readed wowinsider as well, and amazing. Ur such a strong person, en also thumbs up for ur husband Chris. I wish you both all the luck in the world
Comment by Walter — Wednesday, 22 April 2009 @ 08:07
/Salute /tips hat
Bigguss EU – Lightbringer
Comment by Bigguss — Wednesday, 22 April 2009 @ 08:11
/respect /salute
/wave
Sarri/Elunara – Lightbringer EU
Comment by Sarri — Wednesday, 22 April 2009 @ 08:51
Heya from Romania!
Nice blog, keep up the good work!
creizi of Darkmoon Faire EU
Comment by creizi — Wednesday, 22 April 2009 @ 09:56
Cannot explain how much I admire you…think you’re amazing and hope today is one of the “good” ones.
JJ
Comment by This Little Lady — Wednesday, 22 April 2009 @ 19:02
I personally have to salute you and your tenacity. It is always nice to read about a person who has pushed their very own limits to do what they love/enjoy, and be with those they love.
Congratulations on getting mentioned in WoWInsider, and I hope that everyday can become a “good” day for you.
Comment by Khraden — Friday, 24 April 2009 @ 20:03
First of all, I’ve got to say you are an extraordinary person!
I’m glad I spent 10 extra minutes to read about you on WoWInsider, and your “About” section here before going to sleep.
I think that it’s amazing – what you do, that you stick with it and enjoy it despite all the difficulties.
I honestly wish that one day I will be able to face life with even a fraction of the strenght you represent. (And still be able to play WoW ^^! /thumbs up!)
Asher, Jaedenar EU
Comment by Michael — Saturday, 25 April 2009 @ 02:09
A friend with eds pointed me to your interview about playing WoW. So cool. We’re both from a support message board. The first thing we thougt of was ‘we wondered if you used a magic spoon in your WoW – see: http://butyoudontlooksick.com/the_spoon_theory/
Good job at getting the word out about eds…Kudos!
linda
Comment by lindak — Wednesday, 29 April 2009 @ 02:03
I’ve considered sending you a note for a while. I have become passionate about disability issues and truly appreciate your willingness to share insights into your daily life. My daughter plays WoW and found your blog sometime ago. She has followed it regularly and periodically passes along tidbits that she thinks that I might find interesting. I have Sarcoidosis. I have been sick for quite a number of years, but only got a diagnosis once I started having trouble breathing. I’ve been using oxygen full-time for the past year and a half and have been coping with severe chronic pain issues for about as long. In a just a couple of years I’ve gone from a relatively normal functioning individual dealing with a chronic illness to significantly disabled. Disability truly changes your world, and the way you see it. You are more seriously ill than I am, but I can truly relate to many of your trials and tribulations. I am in the US, but it doesn’t sound like medical care is any better here than it is there. I could tell you stories…like the hideous experience at the Mayo Clinic, or doctor 10 years ago that pointed out the muscle atrophy in my hands and then pronounced that I must be going through a mid-30s slump when the EMG came back negative – ugh. I’ve been fortunate in the past few years to have a primary care doctor who had some experience with sarcoidosis during his residency on the East coast. I’m not sure where I’d be without him. I live in Arizona, and Sarcoidosis is very rare here. I gave up on pulmonologists a long time ago. They all go to the same book to look up how they should treat it, and then spout off the same bunch of mis-information. When I got sick I had fantasies that once we knew what this was, it was just a matter of finding the right doctor to treat it. I’ve learned that medical technology is a lot less advanced than the marketing leads you to believe. For the most part I am on my own. Steroids are an ugly viscous cycle.
They work for a few days and then you need to up the dose and before you know it you are taking 60mgs a day and it isn’t helping anymore. Of course, the thing that it does help is the pain, but of course, no one can justify keeping you on steroids for pain, so morphine it is, until the only brand you can take is discontinued, and then you life is turned upside down as you search for something else that will work. Should you ever just need someone to listen, or are interested in comparing notes with someone across the Atlantic, please feel free to contact me.
Comment by Lisa — Monday, 29 June 2009 @ 05:23
ooo new profile pic! me like :)
Comment by Judah — Saturday, 8 August 2009 @ 22:00
A new profile pic, a new .ico pic (tiny though it is maybe) and an entire new page explaining and listing off everything she’s been diagnosed with (we think) the completely valid and the less so :)
Comment by vaedry — Monday, 10 August 2009 @ 15:37
I am a 53 yr old female, mother of 6, grandmother of 5. I was recently evaluated at Johns Hopkins for EDS. After all was said and done, I checked 4/9 on the Brighton Test (sp) and the Dr. basically concluded that I may have EDS Hyper, I may not have EDS Hyper, but advised to treat all my osteoarthritis and myalgias the same as EDS Hyper. The dr advised that if one of my children tested/evaluated with hyper, classic or vascular he would then, “of course … add that to my diagnosis”. He also suggested I have an echocardiogram as two of my children have Mitral Vavle Prolapes and my son has a bicuspid aortic valve. He went on to say, whether he could say I definitively had EDS or not was not important. I don’t know why but not getting a diagnosis is frustrating.
Prior to going on disability in Oct 2005. I was a vibrant woman full of life and at the top of my career. I had frequent joint issues, instabilities and dislocations during my life. I never thought that the strange, and sometimes entertaining abilities I had, i.e. stretching, popping out joints etc. would leave me in this much pain so many years later. This has been the most frustrating 4 years of my life. And, what most people would be grateful, seems to frustrate me the most, I don’t look fragile. Don’t get me wrong, I appreciate that more than I can say. But it hurts every time I see the look on faces when I sit at drs ofc, park in a handicapped spot, etc. Everyone says that I look great, except that I do look tired a lot.
I have had 4 surgeries in the past 18 months to repair a bucket handle tear of my left meniscus with chondrmalcia fissure repair (?), repair of a full rotator cuff, detached bicep tendon and labrum on my left shoulder, C5-7 discectomy with donor bone replacement and anterior titanium plate and screws. I finally had my gall bladder removed after 10 years of chronic nausea, diahrea, reflux and pain. At least 70% of the nausea was relieved, and believe me I am grateful for that. I now wait to have a repair to my right hip labrum tear. And most insulting, I have urinary incontence.
I guess what I am trying to say is, I feel some of your pain. I admire your positive action. When I had the MRA on my hip I spoke at great length to the radiologist performing the injection. I asked him how often he saw EDS. This took our conversation down a path I was happy to travel. The radiologist acknowledged seeing EDS occasionally. He said he often saw this type of injury. Before he left the room I asked him if he would do me a favor. He looked at me and I asked him to please remember EDS whenever he sees injuries like mine and to communicate with physicians about this. He actually looked at me and smiled, he said he would.
Since my visit at JH my 20 yr old son with the bicuspid aortic valve was playing basketball and a player on the floor grabbed his leg and pulled my son to the ground with the other player on top of him. The injury did not fit the accident. He had dislocated his ankle, a broken fibula with fracture that traveled up towards his knee. He has been the talk of the ortho’s office. His injury required two surgeries, a plate, 6 screws and 10 weeks of no weight bearing.
I guess I am rambling, but this has been the most difficult and introspective inspiring time I have ever experienced in my life. My youngest daughter, 13, will be seen at Children’s Hospital Medical Center in December. I am certain she will be diagnosed. I hate what this has done to my body. But my hope is that the knowledge of EDS’ existence and all the mistakes I made because no one knew what EDS was, will somehow benefit my daughter and son’s ability to live with this disorder.
And, last but not least, thank your lucky stars for Chris. Being with a kind human being thru this cruel illness must be very helpful. :)
Comment by Angie — Tuesday, 27 October 2009 @ 04:10