Just got back from the Ehlers Danlos Society Learning Conference! Us Zebra's know how to have a rock'n time (at least the junior and teen Zebra's did)! Hands down my favorite laugh was when 10 of us went out to dinner after the rally.  Chairs with no backs? Nope, need regular chairs and also no booths please. Gluten free soy sauce? Yup, they got it. Peanut allergies? No allergies, we can eat there. Nine, no ten, no nine, no ten but with space for a wheelchair.  The poor hostess thought we were crazy as one person stood at the front of the group relaying all the criteria being called out at one time. I did notice that about 30 minutes later there was a different hostess. I realized how crazy we must look to the other guests as we each demonstrated trigger point release techniques on each others sore shoulders. The last of us were asked to leave at about midnight when the waiter really wanted to go home and the kitchen was long closed. Ahhh, good times.

Going into the weekend I wanted to see everything, learn everything and experience everything.  So what came next? Knowing that it is often harder to know you can't do something than that you can. My body helped regulate my grandiose plans starting with the drive on day 1.  I had to pull off a couple of times. One to nap, one to caffeinate. Over did it day 2, overslept day 3.  Slept all day day 4. Sound familiar?

Sounding familiar is my theme today. My daughter Nicole came with me. She was as excited as I was, maybe more.  She had "met" a bunch of girls on the EDS teen Facebook page and several of them had planned to meet up.  I texted her the first evening to find out where where was. She was in the "Sick Chick Lounge".  Love their sense of humor and camaraderie. Since EDS is genetic, just a guess, you have kids trying to figure this out. If not, this hopefully this blog will help you support little Zebra's.

You would think that putting sick chicks in a room together would look like something from a made for TV movie but it's not. They are hilarious! It is the only place they can compare party tricks and the number of pills they take per day and not be judged.  Everyone in the room actually understands each other.  Even when kids have best, best friends at home, there is something different about this.

My first take away from the conference is a mommy tip.  Make sure your kids interact with their health peers.  We all try and make sure that our kids spend time with friends and have go to extra curricular activities.  This is just as important. Be it online or in person, try and give your kids time without parents with kids that have EDS.

Given that EDS is a cluster of symptoms, they are each familiar with how the others feel, but without necessarily having the same expression of symptoms.  The worst thing anyone can do is compare conditions but since they all have an alphabet soup of acronyms - EDS, POTS, FIBRO, CFS, GERD - they are able to support each other. Do you have this? Have you seen that? Does your body....?For any one condition or symptom Nicole has at least 5 others in the group of 10 can relate. If they had gone to a support group for any single condition the other kids would have thought they were crazy or faking for having more than one significant medical problem. If the kids didn't, trust me, the parents would have thought I was an internet over-diagnosing parent. EDS is their common bond (so are doctors that have pissed them off but that is better left for a different day).

Here is the link for all of the presentations. http://ehlers-danlos.com/2016-ehlers-danlos-society-global-learning-conference/  Of course they were on target and had great information, but conferences are all about networking. When I told someone that I was looking to make a list of "Wish I had known..." he pulled out his phone and had a list ready.  Start with this one.

Great idea. Use the lightweight dishes made of plastic or melamine to reduce stress on wrists, elbows shoulders.  I personally like melamine and have used it for years.  It wasn't until I saw his list of tips that I realized that I bought mine shortly after my wrist and elbow started having pain. I adapted my environment to my needs and had a great shopping trip to boot. Melamine can be gorgeous but tends to be expensive when it is. It is also a seasonal product.  I got my set in the late summer when it was on sale and then last year when I went to replace them during winter I couldn't find them anywhere. Pier One and Bed, Bath and Beyond should start clearing out their summer stock on sale shortly and I will be replace the set I got 7 years ago. The rest of the list will go up this week. There are a few really good ones. Look for sales this month and next if you need them.