Life In The Slow Lane With EDS
You’ll have to pardon my ironic pun… “Jette” is my nickname (short for Juliette) so the term “jet-set living” sounds cute, but the truth is I live anything BUT a “jet-set life”!
I have a genetic condition called Ehlers-Danlos Syndrome (EDS) that has left me permanently disabled since my mid-30’s.
While being disabled is always a challenge, it has also given me a new appreciation for life, and it has taught me to take the time to stop and smell the flowers!
The Reality is that rather than living a “jet-set” life, I am actually a bit of a hermit… a “Lone Wolf”, if you will. One of my favorite quotes is by Henry David Thoreau:
I find it wholesome to be alone the greater part of the time. To be in company, even with the best, is soon wearisome and dissipating. I love to be alone. I never found the companion that was so companionable as solitude.
~Henry David Thoreau
I think most people equate solitude with loneliness, when in truth they are very different things! I believe that when someone experiences loneliness just because they are alone, it is because they have not learned to enjoy their own company. This makes me a little sad for them. A person who truly loves themselves and has a rich inner dialogue will never feel lonely!
While I am definitely an introvert, that doesn’t mean I don’t enjoy socializing, it just needs to be on my terms. I usually prefer to socialize in small groups because I find them less overwhelming, and in my own home where I have access to all the creature comforts that make life with a disability more tolerable.
I like to think this has turned me into a gracious hostess, and although it takes a lot out of me, I truly do enjoy entertaining in my home. I pride myself on keeping a home that makes people comfortable; not so sterile and staged as to make someone feel like they shouldn’t touch anything, but with enough thought to design that it feels warm and welcoming. I want them to think it’s pretty, but still feel like they can kick off their shoes, put their feet on the couch, and make themselves at home! I also like to think that, while I am certainly no professional chef, I am a pretty good homestyle cook, and I love feeding people!
I’m not a food blogger, so my recipes don’t come with lots of notes and details or touching stories and humorous anecdotes. I just get right to the point, LoL. But if you have any specific questions, feel free to Contact Me. Also, if my recipe was originally found on the web, I link back to the source at the bottom of the page, where you are likely to find such extra Blogging content. But don’t be surprised if my version is a little bit different… I tend to tweak recipes as I go until they are perfect for my specific preferences.
Click Here for an Alphabetical Index List of all the Recipes I have uploaded so far!
I think it would be fair to call me a “crazy cat lady”! I consider myself a bit of a cat-whisperer, and over the last 5 years I have taken it upon myself to become the caretaker of the feral cat colony in my neighborhood. I have taken in many cats during that time, and have domesticated and found homes for most of them. Some of them are a little too wild to be indoor cats, so I had them vaccinated and sterilized under Wake County’s TNVR Program, and released them back to the colony.
I currently have three cats of my own, and I have decided three is definitely plenty to have in my house at one time. One summer I took in two litters at once and had a total of 11 cats in my home… I thought I would go crazy! But I’ll never give cats up completely; they are a constant source of entertainment for me, and I love the “cat-tastrophe” they have made of my life!
Blogging has never really been my thing… I don’t really think I am interesting enough for people to want to read my thoughts on a regular basis! But here it is in all it’s glory, for those of you who are bored out of your mind and want to waste some time, LOL.
The EDS community has adopted the zebra as it’s mascot (like many other rare disorders), because of the adage doctors are taught in training: “When you hear hoofbeats, think horses, not zebras”. The meaning behind this is that most of the time, the simple answer is the correct one, and rare diagnoses are just that… rare. So when they do encounter someone with a rare condition, we are called “zebras”.
EDS is a complex disorder that affects many different bodily systems, and each patient may seem significantly different when it comes to symptoms and overall condition, so it’s hard to sum up in a few words. There are actually more than a dozen different types of EDS, with different characteristics, but a lot of overlap. I have Type 3, also known as “Hypermobile Ehlers-Danlos Sydrome” (hEDS), because one of the primary symptoms is having joints that are overly bendy (often called “double jointed”) and also very fragile and prone to dislocation, subluxation, and/or injury.
At it’s heart, EDS is a connective tissue disorder that affects the collagen in the body. Since collagen is a major building block in nearly every bodily system, that means EDS can affect all of these systems! This diversity is part of what makes EDS difficult to diagnose, since it’s different for every patient and often mimics the characteristics of other health issues. If you would like to know more, feel free to explore the EDS Section of my website, where I plan to compile both educational info and my personal experiences.