My dear MySpace friends with and without EDS,

You have all been so patient and kind this year, and I thank you so much for your encouragement and support. I am finally able to post some good news about my health for a change. Since I'm still a bit weak, I'm lazily copying an email I sent to a close friend who INSISTED that I write a personal update about how I'm doing. So, for everyone else to be caught up in the saga that is my life, here it is - with love from Mags:

"....We can't get enough publicity about Ehlers-Danlos and bless you for helping by raising your voice. We do pray that somehow somewhere someone "big" will come forward about their EDS and become a spokesperson for EDS awareness.

"We also pray that somehow someday people will be compelled or convinced to fund more research into EDS (there is a huge connective tissue disorders study through the NIH/NIA at Harbor Hospital in Baltimore headed up by Dr. Nazli McDonnell that has been going on for at least 7 years, I think) so that once it is published the medical textbooks around the world will be changed and med students will be better educated about EDS and how to recognize it and help their patients "deal" with it.

"In my email inbox from May is a message from you asking me to let you know how I am doing, 'personally, for a change' rather than just the regular broadcast emails about EDS that I send out from time to time. And, I've had every intention of responding with the details, but news over the last year (and one before) was just not too good and therefore blah to talk about.

"But, as of the very end of November this year, I finally have begun to get back on my feet. My setback began two years ago when my mother fractured her spine the first time in February and then again in April. I stopped my twice weekly 45 minute deep water workout and spent much time aiding my dad in caring for her thru her two successful surgeries – and instead, I put on about 40 pounds for my 40th birthday when I had planned to loose 40 pounds for my 40th birthday.

"Then, the end of 2006 in mid-November I developed a persistent upper respiratory infection (URI) that lasted through August of this year (ended with my 2nd round of my 4th antibiotic). During my URI some of my medications had been changed and I developed additional problems (sleeping 14-16 hours a day and putting on an additional 30 pounds) like more pain, etc.

"After finally fighting off the URI it became clear that perhaps my meds weren't treating me properly and so everything was stopped. Shortly thereafter, I lost 30 pounds and my pain decreased by about 70% over the next couple months. Well, that would make just about anyone feel better, right? You bet.

"But, the edema came back: 30 pounds of water weight build-up over the course of TWO days. This hurt, brutally – because the fluid would put pressure on all the little nerves throughout my knees in particular because the fluid "containers" in my body are extra stretchy due to my faulty collagen and therefore could fit through and fill every tiny little crevice! BUT, stopping what I had taken that caused the edema to come back, and LOOSING that same 30 pounds within two days, well I was then thrilled that we're finally narrowing down the possible causes of what's going on – and that's a huge step in the right direction, finally.

"You know, honestly...I believe that this condition, this Ehlers-Danlos Syndrome of mine has ultimately been a true blessing for my life. It slowed me down, made me greatly appreciate good days and good times I've had all the more. From a very young age I've experienced almost overwhelming empathy towards people who had suffering in their lives (which unfortunately seems to be just about everyone in some way, shape or form, or another – regardless of how these people may choose to react towards it, or because of it, or despite it, or to hide it, etc.), and I think this experience has made me a more thoughtful and less selfish person than I may have been had I not been born this way.

"[This may sound a bit extreme to say, but I come from a family w/very hard heads, so it takes a lot to get through to us; and, being the overachiever, type-A, self-centered, egoist that I potentially could have been, I imagine this impersonal jerk could have barreled past the caring, helpful, deserving, beautiful and worthy people (some of whom I am honored and privileged to call friends) I would never have recognized along the way.]

"It WAS extremely difficult to go through the first 35 years of my life being told that there was 'nothing wrong with me' and that my mother was a hysterical parent who inappropriately coddled me. I lost count of how many 'caregivers' seemed only to wish to add to my pain and suffering. But for the fact that my mother NEVER questioned the legitimacy of what I was describing to her, my experiences, how I felt as I moved through the world, how I felt as the world moved "through," around, up, down, sideways and in circles around me making me exhausted and dizzy from it, its coldness and its harshness, I NEVER would have allowed myself to 'make it.'

"And here, now, in this wonderfully blessed life I'm living, I hope I can make that kind of difference for others with chronic illness, an invisible disability, or a life filled with pain.

"Before the setback of the last two years, I was on top of the world. And one of the most wonderful things about my experiences with this condition is that I have a chance to eventually get back on top again. (I always feared that I was destined to live a life like Sisyphus', but I now know that there really isn't a choice, so I might as well find some joy in it.) Physically, unlike a 'normal' person who dislocates (say, for example) a lumbar vertebrae who then gets a terrible shock of sciatica pain which may eventually or inevitably lead to fusion surgery, I can dislocate the same vertebrae and get the same strong sciatica shock, but I can also trust my body that this pain doesn't have to stay with me constantly OR forever; rather, my vertebrae can be moved back into place, and I can have help building scar tissue (through a far less invasive method) between those two vertebrae to tighten them up and tone the small muscles between them to help reduce the severity and frequency of the dislocation(s) and sciatica. In other words, I can "bounce" back like rubber; albeit temporarily, of course – because my tissue will still be genetically faulty and can and will stretch back out over time – but temporarily is good, good enough for now, for me, for today.

"Unfortunately too many EDSers get surgery right away and then cascade into a horrific situation of exacerbating the hyperextensibility of their vertebrae above and below the ones they have fused, etc. THIS SHOULDN'T BE HAPPENING ANYMORE! Doctors need to know more about this condition and how far more common it is than anyone has ever thought before – how to recognize it, how to splint for it, how to teach people to exercise their muscles to tighten their joints through repetitions (NOT WEIGHTS), how to not make their joints worse by moving them beyond a "normal" range of motion, what prolotherapy is, what myofascial release is, what integrative manual therapy is, what good posture is, how great a deep water workout using a buoyancy belt can be for toning one's muscles w/o resistance and without being weight-bearing, using moist heat, getting a light massage, performing acupressure, having acupuncture, taking supplements that can help reduce muscle spasm such as magnesium (which also makes the digestive tract 'looser' which for some EDSers with chronic constipation can be an added bonus), taking supplements that can help reduce inflammation, soaking in a hot bath, using topical pain relievers such as capsaicin and others, and whatever other coping techniques there may be…

"It was so nice chatting w/you on the phone tonight. As you can see, I guess I got a little carried away with this email – particularly because you mentioned how I should cut and paste it into my blog so that my Health Update is more up to date – FANTASTIC IDEA!

"Thanks... – and thank YOU for sticking by me all those years ago despite me being a true asshole much of the time either wasted or just a pompous poser. I am honored to have you as a friend and am a big fan of YOU, you know. I'm so glad that you have found your soul mate. As my friends find their life partners from year to year my heart is warmed with the thought that life does have its good points. I honestly never believed that it was possible that my world would include sharing my true self with another being – especially when I felt that I never would get through all my baggage to even see my own insides (who in the world would want to strip down their ego to bare bones?).

"But, when it happens, wow! Right? Yeah. And I'm so very very happy for you .... my best wishes for your new year on the planet together. May wonderful things happen for you and all others reading this blog right now; yes, you!

"Much love and admiration,
Mags
www.yomags.com
yomags@comcast.net
http://firstgiving.com/yomags

President, EDNF Northern Virginia Group http://firstgiving.com/ednf-nova
Volunteer, EDNF Baltimore and DC Groups
Volunteer, EDNF Communications Committee http://www.ednf.org

Ehlers-Danlos Syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders. It is a progressively debilitating syndrome that can cause loose unstable joints which dislocate easily, skin fragility (tears and bruises easily), and/or organ fragility (major organs, veins and arteries can spontaneously rupture). EDS affects about 1 in every 5000 people; however it is grossly under- and/or mis-diagnosed: some 80% of people with EDS do not receive a proper diagnosis or treatment within their lifetime. We are working to change this statistic by raising awareness of this disorder within the medical community and in society at large. The EDNF is a 501(c)(3) nonprofit organization."

Original post from August 1, 2007: I know you've been wondering what the heck is going on w/me (in my uncharacteristic silence) due to my ill health this year. I'm writing today from a place of hope – yeah, at least I've got that going on. (And "hope" is not a word I'm known to use; but, for one thing, my elderly parents are healthy at the moment, but all fingers must remain crossed, please.) Monday morning was my latest upper respiratory appointment – I've basically had a serious version of this thing (set in and sapping my energy) since November 2006 – for which I am now on my 4th round of antibiotic. (Let's hope the 4th time's a charm.) It was time for me to decide if I was up to driving myself to the appointment or if my husband (who had not yet left for work) would have to take some time off and take me... Suddenly he heard a scream and a dozen or so thuds then asked, "Did you just fall down the stairs?" "Yes," was my answer. We told the doctor it was 12 hardwood steps, but when we counted later it was 16. My right slipper flew off as I began descending the stairs and the slippery sock of my right foot slid out from under me. I was suddenly made into a sled of legs and went thud thud thud thud thud thud thud thud all the way to the bottom. By Wednesday, the whiplash effect to my upper back was the worst pain I was still experiencing – not able to take a deep breath without severe pain in the spine, which began that Monday night. Of course, Monday night it was all about the butt. Ouch. My osteopath fixed all of it on Wednesday afternoon. He opened up the butt bones which had collapsed into themselves like a big turtle. Then, one by one he worked his way up my spine unlocking each vertebra that had twisted and locked on top the next. I can breathe once again. I was somehow, blessedly able to keep my neck (my cervical spine has my loosest and most vulnerable joints) aligned the whole way down – this is the second thing to be thankful for the second thing giving me hope. Still sick, still in some residual pain from the fall, still overwhelmed… That's my condition for now – let's hope for not much longer. (Thanks so much for all the encouragement and patience I've received from everyone.)

Peace on earth! Mags