Journal

I apologize to those of you who have been wondering where I've been and had no other way to reach me. I am back online at yomags@comcast.net if you need to get in touch - my new PC is almost set-up and I hope my old data will be restored in a month or so, but I can't set any dates in stone. Everything in my life is up in the air and I'm wishing Shiva was helping me juggle. 

My husband (my home computer specialist) has been ailing for a while and his illness finally came to a point where he had to stop working altogether (as of the end of July 2008) and he's been home with me 24/7 (as I'm a retired once full-time volunteer for www.ednf.org, and a part-time caregiver to my 92-year-old mother and 85-year-old father) ever since... Him being around all day/night has taken a little getting used to. 

But all semi-joking aside, he has been so very ill and it has been such a hard thing for us both to go through. His problem is basically a GI physiological issue of redundant colon (he's 6'6" w/a 12' large intestine - twice a normal person's size, w/a small intestine about twice as long as it should be as well) coupled with low-motility and distention which has led to separation from the abdominal wall which has led to impingements throughout the tract which he has to manually manipulate to encourage continuous flow, and all this having led to a collapse of the abdominal floor onto the pelvic floor which cuts off the circulation (blood, lymph and nerve) to his legs causing extreme edema, fainting and other complications as you might figure.  

I'm not sure why I'm writing all this down here since I don't really want to have a discussion about what he's been going through - nor do I really want to have a discussion about what I've been going through because of what he's been going through. But, I did want to let everyone out on DailyStrength know that I've been missing checking in with you all - and didn't mean to be out of touch for so long. 

Things are improving for all of my family lately. My husband has a specialist at Johns Hopkins in Baltimore now - just like me only for his particular issue, which means that we get twice as many opportunities to stop by our favorite restaurant in Fells Point on our way home from appointments now - a very great PLUS of this whole mess. And, he has learned how to deal with his "flares" and impingements and other issues as they arise. The only huge remaining question is: Will he be able to keep his job? 

His supervisor put him down as AWOL rather than on medical leave and they could terminate him at any time although he has documented medical issues. So, yet another part of this mess may involve litigation ultimately and that's almost as unappealing as dealing w/some of the nitty-gritty of this illness itself - as I'm sure you all can imagine. 

Hey, thanks ya'll for being out there for me to vent this to. I'm sorry that I had to do this - I didn't mean to - it just all came out this way. But thanks for being here for me to do so.  

We're blessed that this "illness" came to a head at this point in our lives and not later when we are older and less able to bounce back from such things.  

I wish all the best of everything Spring to everyone out there - and health and happiness in addition and in abundance! 

Peace and love,

Mags

I don't remember adding this "Get Healthier" goal in October 2008, but here is the Journal entry to prove it. I'm commenting on this in March 2009 - my first time on this site since October I guess, and wow - I'm moving in the wrong direction. Oh well, tomorrow is another day.

Ehlers-Danlos Syndrome (EDS) awareness is desperately needed. Spreading information about EDS has a direct affect on the quality of life for at least 50,000 known people in this country alone, and countless unknown.

I am using this site in the hopes that all of you can have a better understanding of my disability and how we with EDS are impacted every moment of our lives and can benefit from your help.

An EDS General Awareness and Patient Brochure is available for download here: http://www.ednf.org/dmdocuments/eds-brochure-high-res.pdf

Please use it and this Sports Poster flier: http://www.ednf.org/images/stories/EDNF_Kids_and_Teens/Sports_Poster.pdf to inform yourself, all of your doctors, your children’s schools. and your local gym and community centers about EDS and how it is diagnosed.

(For every facility, doctor, school nurse, school gym teacher, local gym, community center, etc. that you give these materials to, please post their location and contact information on www.ednf.org to inform EDSers about these newly EDS-aware resources in their area.)

Print out and distribute these brochures and fliers to whomever you meet. The only thing “rare” about my disorder is the amount of people who are properly diagnosed within their lifetime – awareness can help change this.

I deeply appreciate all of you helping me spread the word so that people who have needlessly suffered will finally have the recognition and assistance that they so desperately need. Please help make it a Happier EDS Awareness Month every month - EDS Awareness Month isn't just limited to May! (Forward this information to everyone you can.)

Best wishes and sincere gratitude, Mags