A bit of an update...

I have been so busy reading other people's blogs that I have neglected mine! Well, that is not entirely true, I have to place blame somewhere...not with myself of course. I have decided to take up painting and drawing. It is very theraputic and calming. If my day has gone to hell, it will be sure to get better after a few hours of painting my frustrations out on an empty canvas. You would be surprised at what winds up on the canvas when you are pissed. The colors are more severe, bold with straighter lines. More definite and precise, maybe it is because I am just so focused. As I continue and my tensions begin to leave, I find that my strokes soften as well as my colors...even my choice of colors soften. Here are some of my pics, now remember, I am still VERY new at this so don't laugh!!!

Here's the skinny over the last few months. I did wind up in the hospital...again in early June, for IV antibiotics. This has become so commonplace in my life that I simply wave it off these days. Years ago it would have been a big deal, but not now. Even my kids have grown accustomed to my repeat stays in the hospital, saying to friends and family who inquire about my whereabouts, "oh, mom is just in for a tune up.". I feel like a car whenever people refer to my hospitalizations as "tune ups"...but alas, they are. After some tweaking and experimenting with this drug and that, I come out of it better than when I went in and am able to maintain myself for a few months or so before I decline and have to set foot back into the unit for more precious antibiotics.

So...what else is new with me? I was finally diagnosed with yet another genetic disorder called Ehlers Danlos syndrome, hypermobile type. What does that mean? It essentially means that I have faulty or deficient collagen in my body. This affects my joints, blood vessels, skin...anything with collagen in it. My joints sublux and dislocate easily, have since I was eight years old. It became so common place that I actually thought that it was normal to dislocate them! If my knee slipped out of place, I would crash to the ground and quickly pop it back into place. Onlookers are usually appalled or incredibly creeped out, often ready to call 911 until I assure them that I am okay and "see, I put it back, all better now" . I was also called a human pretzel and could contort myself into the strangest of positions which also involved some sort of dislocation or another. I truly regret doing those "tricks" now as the damage to my ligaments and joints has been done and I suffer with the aftermath daily with chronic pain. I can also stretch my skin out to an abnormal distance which also tends to freak people out, especially interns who take turns pulling on my skin and messing with my joints all the while exclaiming "oooh...aaahhh" which often reminds me of the sounds you hear from people while watching fireworks, hearing those very sounds with each display as they crackle in the sky. EDS is not a very common disorder and is often missed or misdiagnosed. The odds in getting EDS is something like 1 in 5,000 to 10,000.

So...how did I get this diagnosis? By researching on the internet, looking for reasons as to why my now 16 year old daughter was experiencing joint pain, circulatory problems -Raynaud's
for one and dislocations as well. It was like deja vu, I was determined to find out the cause as I had been blown off so many times by other doctors, specifically rheumatologists for my complaints and would be damned if my daughter went through that as well. While I was in the hospital back in december, I happened across a description of Ehlers Danlos and my heart nearly stopped. So many of the symptoms applied to me as well and so I sought out a geneticist who specialized in this disorder and saw him. He with absolute certainty, diagnosed me with Ehlers and believes my daughter to have it as well as it is an inherited condition, specifically by autosomal dominance . My daughter now sees a rheumatologist who takes her seriously and does not negate her pain. She will be receiving life long physical therapy to keep her joints in as good as condition as possible with emphasis in avoiding activities that would traumatize her joints further.

Hmm...anything else? Not really...I will stop here for now before I sound like I am babbling! Until next time, take care and peace. Hugs Jenn :)