SUPER ZEBRA STRONG ADVOCATE!!!!!!!!

Out of the box thinking like is how money is raised to put treatments through the FDA. I am sure that in everyone's life there are opportunities missed. This is the story of my opportunity found.

Funny Story.  Yesterday I went to a meet and greet for Demi Lavato and Nick Jonas. For those of you that don't know they are incredibly talented pop stars that have a fan base with an average age of 16.  I went for my daughter to try and win her tickets but then it turned into a ZEBRASTRONG advocacy opportunity.  

I went to my car to try and find something, anything, to get an autograph on.  What did I find? The program for the Ehlers Danlos Learning Conference and a Sharpie marker! Then came the idea. If I could get their autographs on the program I could help raise money for research by auctioning it off.  

I am not shy by any means.  I had a mission.  I was a SUPER ZEBRA STRONG ADVOCATE! Using my powers as an adult in a sea of tweens I made my way to the front - just shy of the stage they were going to be on.  OK, it was loud but I was on a mission.  I reached for the girl in the front row, handed her the program and marker and gave her instructions.  If they came through and did quick signing hand them the program for autographs. 

End of story for the moment, tweens are VERY loud when they scream!  They didn't do any autographs and, in fact, spent about 5 minutes saying "Hi" and answering pre-elected questions and then left.  I was as disappointed as the kids. I wanted to help.  I wanted to raise money for our cause.

But being a SUPER ZEBRA STRONG ADVOCATE, and an adult in a sea of children, I used initiative and walked behind the barriers straight up to all the security.  I asked, "What is the name of the woman that was announcing and did they know where she was".  They politely answered my questions and I went on my journey for autographs.  I couldn't find her, she disappeared right with Demi and Nick, but.... of course as I gave up and was leaving I seized another opportunity.

One of the morning DJ's from Washington DC's 99.5, Intern John, was there signing autographs! His station was a major sponsor of the show.  I knew he would be there and most likely be back stage.  I walked up to him, handed him the Ehlers Danlos program and said, "Ms. Lavato is an advocate of invisible illness.  I am trying to raise money for research.  I put my contact phone number on the back.  If you have any chance could you have them autograph the front so we can auction it off".

Simple, clear and to the point.  No long discussion or explanation.  If not, it gives people time to say "no".  He said he wasn't sure if he could, but would try.  I couldn't ask for more than that.

I haven't heard anything back but at least I tried.  

Out of the box thinking like that is how money is raised and how treatments are put through the FDA. I am sure that in everyone's life there are opportunities missed. Look in your life and see what you didn't see before.  Do you have a relative in the industry. Do you have an employer that is looking for philanthropic tax deductions, are you going to a show that gives you a chance for autographs people pay good money for>  Can you and your Spoonie friends find a consignment shop to give old cloths and household items to for the purpose of raising money? Can you tell every parent in your child's school to sign up on Amazon Smile and attach their no-cost to them donations to the Ehlers Danlos Society?

Regardless of the outcome, I had a ball trying.  

Then went to sleep for 15 hours.  I was ZEBRA STRONG! 

104 Degrees Fahrenheit. I will come back to this later.

Last year I went to a conference that was specifically about fascia.  Fascia is the connective tissue that holds EVERY part of your body together.  The information changed how I understand and visualize what is happening in my body. This was a conference for medical professionals and presentations were given by leading researchers.  I am going to start with some basics for those who don't know. You hear a lot about pain, but rarely specifically about fascia and WHY it causes you pain.

I am an inquisitive person.  I read every physiology book I can find and see how the information applies to my symptoms.  It rarely does.  I knew how my body felt and how it reacted to trigger point injections, steroids and dry needling.  There were big gaps.  It wasn't addressed in EDS literature either.

Let's define fascia, but not medically. I use this example when I tell people why EDS causes pain. Feel free to use it as well.  When you have a hard boiled egg and you start to peel it but only the shell comes off, that thin layer of film is fascia. It is a wrapping that when poked with a fork looses its integrity and allows the actual egg to be exposed. The rest of the film is now much softer and doesn't hold as tightly.  That is how a muscle works.  A muscle is made up of thousands of fibers, each wrapped in their own thin film or sheath - the FASCIA. When you have a trigger point injection or dry needling it is, at the most basic level, the same as the fork.  Your muscle that has had that has had a tightened sheath now says, "OK, I can relax and get soft".

Now take that one step further. For those of you that have ever seen the inside of an electrical wire there is the outside, but when you pull that back, each wire inside is covered by a coating and twisted with other wires that are coated. The wire is your muscle fiber the plastic coating the fascia. Line them up, coat them together, then put that bundle with other coated bundles and coat them together. The plastic coating on the outside of each of those single wires or bundles of wires become the make-up of a muscle.  Enough of those bundles together all anchored to a tendon or ligament at a bone joint and you have a muscle. Every single thing in your entire body is coated with fascia.

On normal people, if the fascia becomes tightened, it either relaxes on its own after time, massage can make it go away, or at worst, trigger point injections or dry needling takes it away and it stays away. Not for us EDS Zebra's. When our fascia tightens it doesn't let go on its own, and more importantly, it keeps tightening again and again. Why does it tighten from normal activity?  That is where what the doctors tell you comes into play.  The ligaments and tendons (more on that another day) have a lack of collagen making them very loose.  Since they can't stabilize your joints on their own, your muscles take on that role, tighten, and there you have it.  Tightened fascia = PAIN!

So what you ask? "I have tightened fascia. Why does that cause pain?"  Because nerves both big and small, each also wrapped in their own fascia, are running in, around and through those bundles of muscle fibers big and small.  Same with blood vessels. Problem is that when the nerves get compressed from everything around them being tight, they cause pain. When you get a trigger point, some of those bundles of muscle (wire bunches) start to go in different directions than the rest. There are also cellular changes but that is not important right now. That is why you can often feel trigger points as knots in your muscles.

At this point, when explaining it, I tell them to think about the worst knot they have ever had, the worst charlie horse they have ever had.  Ok.  They got that in their heads.  Now tell them that someone, you, with EDS has that feeling from head to toe all of the time.  Every minute of every day. Trust me.  They suddenly start to understand your pain.

Remember the 104 Fahrenheit I told you I would come back to? This was one of my three biggest take-aways from the fascia conference.

The fascia when looked at under a microscope is actually a big matrix that looks like a honeycomb but soft like a sponge. When your fascia tightens it is like the honeycomb being squished or sponge being rung out. The honey is squeezed out as is the water, respectively. They needs that liquid for its optimal and healthy shape. Also to glide bundles against one another for movement.

After a massage, trigger point injection, dry needling, whatever it is that releases your muscles you need to heat that area to at least 104 degrees. According to leading researchers of fascia, the 104 degree point is the optimal point of viscosity (liquidness)  for the liquid in your fascia to start to flow, move and come back to those flattened areas and become healthy again.  The compressed nerves are released, the blood starts to flow and healthy fascia starts to come back.

I used to get really confused.  Some practitioners would ice the areas, others would heat them.  I would always ask why do you do one, when other practitioners do the other.  Both are correct but for different reasons.

Heat starts the liquid in and between fascia, hyaluronic acid acid (good), to move,   Heat also increases blood flow to the area which washes out the lactic acid (bad) that built up.  Why do some people use ice?  Because it reduces the inflammation and pain from the needle.

Tip: Always initially heat the area to at least 104 degrees Fahrenheit right after muscles are released to help the fascia glide and start to function normally.

Remember.  Muscles don't hurt.  The nerves running through and between them do.  When the fascia that holds muscle tissue is allowed to glide and function normally nerves are released. When you hurt, use heat not ice.  Ice is for inflammation and makes the hyaluronic acid thick like oil in a car in the cold of winter. It doesn't allow the liquid in the matrix to move and allow fascia to glide against one another.

Hope this helps.  I realized talking to people at the conference that I had a visual understanding of our pain mechanism that few doctors have time to explain. Pieces and parts have come from different doctors, the egg example I came up with to explain it to my daughters 5th grade class when they picked on her for having to leave class. I also played "Simon Says touch your glutenous maximus". They had a ball, could now sympathize and it really helped.  I used to be an elementary school teacher.  When I explain things I try do so in a way that is not so complex that you need a degree to understand it but does not assume that you are an idiot and incapable of understanding some medical terms, especially when explained visually.

More about our pain mechanism and things I have figured out another day.  Please don't storm me with corrections.  Questions yes.  This is a VERY simple explanation and how I, me, just me, like to explain it.

karen

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.

Welcome! I hear a herd of Zebra!

WELCOME!!!

Today is the first day the site is live. WELCOME!  I am at the Ehlers-Danlos Learning Conference in Baltimore so it seemed the perfect time to launch.

This will be a growing, living, developing blog. The tag that goes with the site name, "I hear a herd of Zebra" is important.  It means that we have a voice in the medical community.  It means that we are "we", a herd, a large group with needs not yet met. We are not "I", alone and searching for help. We are a HERD, together. HEAR us and find diagnostic criteria, research funding and appropriate treatment.

I don't know for sure the direction I want to take is lessons learned and tips and tricks.  Issues covered will be Ehlers-Danlos, but also invisible illness.  We each have our own medical issues, none of us are the same, but I will blog from the perspective of my family and share the experiences of others.

I am at the conference so come find me.  I am wearing a long grey dress and a zebra print overshirt. I am sitting in the back of the room at the second table from the right.

I would like to start with a challenge to everyone that reads this blog.  I will be taking comments and discussion - rules to follow.

Challenge: I would like everyone I can find to come fill out a post-it and share something you wish you had known earlier in this journey. I am going to start to make a "lessons learned" page.  Maybe we can make the Zebra journey easier for everyone.  There is always something to learn.

I will start.

Lesson Learned: One simple lesson I learned is that doctors write anecdotal information in medical records that they don't share in the post - visit paper they give you.  If one happens to think you are "faking" or a hypochondriac each doctor thereafter will read it and start to dismiss your problems.  Ask for those notes.  It is your right. If there is something that you think is wrong or misleading, ask them to change it. Doctors that follow then make medical decisions based on what they see, not based on doctors that don't believe you.

That is my first tip.  Hope it helps.