But You Don't Look Sick! GOOD, I'm NOT!

Define the word "Sick"...When I hear the word "sick" I think of fever, vomit, cancer, appendicitis or the flu...Anything where the body is a "host". I don't ever think about my crazy body being sick. I make it a point to tell anyone that asks me about EDS that I am "BROKEN", I am NOT "SICK". Don't get me wrong, on bad POTS (Dysautonomia) days, I can feel very sick, especially just before I faint!

In the past few months, I have come to understand that it is not always bad to be “broken.”  I know that I was born with Ehlers Danlos, it just never "kicked my butt" until 2009. A lot changed in my life when I started to feel icky frequently,  hurt like crazy, fainted often, and could not find any answers. I realized that I had to "pace" myself; there was WAY to much "junk" in my life. I realized that I spent way to much time with people that didn't really matter and doing things that really weren't important in the grand scheme of things. The day I met Dr. Lavallee and we talked about EDS type 3 and Vascular EDS, I was horrified.  I asked if it is likely that I have VEDS, he said "You show significant signs; I recommend that you live your life the best that you can. Ila, make sure that you always have your 'house' in order and that your life is right with God and those that you love and care about". Those words still echo in my mind. It was sobering to learn there is no cure for Vascular EDS; if you have it, you are going to die! Aren't we all going to die? Do we ever know when? Do any of us have a promise of tomorrow? NOPE! We are only guaranteed this very moment, right now! I know, it can be a scary thought, but it's called reality; healthy, sick, rich or poor, old or young; any moment is potentially our last. During an in-depth soul searching, I realized that it didn't matter if I did or did not have VEDS and "knowing" for sure (via genetic testing) would not benefit me. 

You are reading a blog of a girl that grew up in the Funeral Home business; aside from that, my Mother died when I was 13, my Grandmother when I was 17 and My Papa when I was 20...Death and mortality are not strangers to me. As long as I can remember, I have always been the person that forgives and asks forgiveness frequently. When I admire someone, I tell them frequently. I treasure the important people in my life. I say "Thank You" far to often, I say "I love you" without hesitation (when it's true) and I think hugs are sometimes the best medicine (especially if they "crack" your back). Don't get me wrong, it's not all sweet, I don't just say what I think or feel when it's positive... I always "tell it like it is" and I get along best with others that do the same. I believe that life is far to short for dishonesty and "going with the flow". I call a spade, a spade. I do choose to always use class and tact when speaking my mind. I believe"I am who I am" because of circumstances of my life (See above if you have already forgotten). I've never taken life or people for granted. However, after my first conversation with Dr. Lavallee, it hit me like a ton of bricks; somehow, someday, I AM going to die and buster, I better be ready! Whew, that hit harder than any "hell, fire, and brimstone" sermon that I had ever heard!

So many things Dr. Lavallee said to me that day had a profound impact on my life! I left there feeling like Tigger after gulping a Red Bull! #1 I had a diagnosis #2 I had HOPE #3 I had "some" idea of the challenges ahead of me #4 I knew that I had a great Doc that would be kicking my butt and holding my hand every step of the way! When I left that office, I wanted to do back-flips! I was thrilled to know that I am BROKEN, I am NOT sick! 

Over the past 13 months, I have made significant progress! I have quit smoking "real" cigarettes (396 times!) and I am working on kicking the "fake" cigarette habit! I work out more than I have since my gymnastics career ended 17 years ago and I am enjoying it. In the beginning I struggled with the fact that getting better was solely up to me. I quickly learned that eating right, exercising/strengthening and pacing myself are not options for me, they are requirements.  Most of all, I am learning how STRONG I am and how weak I have been.  

On a happy note, being "broken"  has allowed God to work in my heart and life, it has enabled the fragrance of His love pour into and out of me. Per human nature, our hearts and lives are like little fortified “castles” where self and ego rule. Until I was  broken there was little room for anything but my ambitions, and desires. I thank God for utilizing my "brokenness" to strengthen his presence and "kingdom" in my heart and life. My body may be "broken" but that's not all. I have been a christian since I was a child but I have never experienced the power of God in my life as I have in the past 13 months. I have been broken through repentance to experience the renewed beauty of God's Peace. Broken in weakness to experience the power of God's strength. Broken through suffering to experience the sweetness of God's grace. Essentially, Being Broken has made my life and heart for Jesus stronger than ever before.

There is no “cure” for EDS and I doubt they will find a "cure" in my lifetime; it can't be completely "fixed" either. I thank God for blessing me with 2 amazing Doctors; one who "understands", he's broken too; he's in Indiana, but only a phone call away when I need him. My local Dr (Amnott) is fantastic, he does everything he can to help me feel better and I have had a significant decrease in pain since I started seeing him. They are very different with their approach but they both motivate and inspire me, they both pick on me, make me smile and they both offer me hope.  The GREAT Physician has always known I have EDS, he made me this way! I have Ehlers Danlos and I thank God everyday that it does not have me! I am thankful for my amazing EDS friends that I have met on this journey. As my dear friend Molly says “It’s wonderful to have friends that ‘GET IT’!” I am grateful for my best friends Val (her hubby Matt) and Jeri that have heard the question "is this normal?" at least 2500 times and always answer. I am so thankful for my amazing husband that does his best to understand and my children that love me no matter how I feel! Actually, I am thankful for the abundant blessings that being "broken" has brought into my life thus far!  I pray the journey that lies before me is long, adventurous, fun,forgiving and fruitful!

Gentle Hugs,

Ila

P.S. What inspired this blog? I had a conversation today that provoked me to reflect on the significance EDS has had in my life and to reexamine my goals for the future. A few minutes following that conversation I turned on the radio, one of my favorite songs was playing: The Hurt and the Healer by Mercyme. I always cry when I hear that song because it makes me think about how God has always used every loss or “tragedy” in my life for his glory. It brought to mind my favorite “Ila-ism”...My life is a canvas, today is just a brush-stroke, all I can see today and the past. However,.God is my artist and he sees the entire masterpiece. I pray that God continues to bless and utilize this “Broken Masterpiece” so that I bring him glory in everything I do. 

Do you have EDS?

I started on this at the conference this summer and have slowly added to it! Thanks to Anne and Danielle for the inspiration!

If you can pick your nose with your toes, You might have EDS

If you have days when you need a nap to rest up from the effort of getting out of bed in the morning, you might have EDS.

If your body snaps, crackles, and pops,  more than Rice Krispies,  you might have EDS.

If your dentist ever gave you so much Novocaine that his thumb was numb, and you could still feel everything, you might have EDS.

If you laugh hysterically with Anne, Ila and Gary about “Laffy Taffy”, uhm, you might have EDS!

If breathing causes dislocations, subluxations  and pain, you might have EDS.

If you have been called a Klutz for tripping over a thread on the carpet, you might have EDS. 

If your best friend says you are more lax than a spaghetti noodle, you might have EDS

If your joints go out more often that you do, you might have EDS.

If your medical records contain the key words “hypochondriac” “depression” “psychosomatic”, etc...You might just have EDS!

If you go to Cirque Du Soleil and are offered a job, you MIGHT have EDS!

If you think everyone can “pray” behind their back, you might have EDS!

If you plan on your tombstone saying: “STIFF” for the first time ever, you might have EDS!

If you are used to spending 1/2  an hour popping yourself into place in the mornings, you might have EDS!

If you have explained that EDS is NOT “erectile dysfunction syndrome” to alteast 12 people this month, Yeah, you’ve got EDS!

If you have ever said “Oh yeah, you are almost there, push it harder”  to your Chiropractor or D.O. when they are doing an adjustment, you might have EDS!

If you live on drinking salt water, you might have EDS!

If you ever had to stop gymnastics training because you are just too flexible, you might have EDS!

If you have ever been told “subluxations are very painful” and thought “no, really?” (please insert explicative as so desired). You might have EDS!

If you love for people to hug you because it pops your back, you might have EDS!

If you can touch the tip of your nose with your tongue, you might have EDS!

If you can touch the tip of your elbow with your tongue, You might have EDS!

If you have searched for Gumby, in your family tree, you might have EDS. 

If one of the first things you notice about new people you meet are the veins on their chest, you might have EDS. 

Seriously! If your spouse says “Hey honey, let’s go to bed a little early!” and your response is “Only if you pop my back afterwards?”, You might have EDS!

You are sticking a What? Where?

I recently started acupuncture treatment and I like it a lot. I think it was my second treatment when my Doc said "I am going to do acupuncture on your ears". My internal reaction was "You are going to stick a WHAT? WHERE?"...Well, I didn't love it the first time. He inserted small gold "tacks" into my ear at 5 different "points" and told me they would stay 4-10 days. Well, I took them out after 18 days. The "procedure" was not painful, but I could feel those dadgum needles (Tacks) in my ears and that irked me! Well, about 10 days ago my knees were killing me and I went in to see him, he did the "AURICULAR ACUPUNCTURE" for the second time. Two of the tacks he put in actually felt really good, I don't remember the rest. Well, this time I have not noticed the sensation of something "odd" being in my ear, I have even been able to sleep on that side. The only time it has bothered me this time has been the few times I have tried to scratch my ear and that didn't work very well!

So, what in the world is "Ear Puncture"? The "real" name of it is "Auricular Acupuncture" and believe it or not, it's been around for hundreds of years. In Massage Therapy school, I learned reflexology for feet and hands, I liked feet best so we'll talk about them. In Reflexology, practitioners usually focus on the feet, hands or ears and work on just that particular part of the body during a session. "For Feet's Sake"! It has been believed for hundreds of years that certain "points" on your feet correlate to different parts of your body. For instance, the top of your big toe correlates to your head. Got it? Do y'all think I really believed that the first time I heard it? Heck NO! Well, it's amazing! A trained practitioner can actually "feel" the "imbalance" when they are working on your feet. So, what do we do then? Well, we work in that "spot" on your foot and then we apply pressure. A good reflexologist will continue to work on your feet and ankles in their entirety and then return to the "problematic areas" to apply pressure and give special attention. REFLEXOLOGY reminds me a lot of AURICULAR ACUPUNCTURE. 

Much like our feet, our ears are actually a "map" or "copy" of the entire human organism (body). About 60 years ago Dr. Paul Nogier, mapped the human body over the outer ear, after he noticed that the basic shape of the ear appeared as if an inverted unborn baby was placed on top of it. We now know this as the somatotopic representation - the bottom of the ear represents the head of the fetus, the feet are towards the upper part of the ear, and the body is in between. The Helix Curve (outer part of the ear)  represents the back of the body. 

Once we understand this, it's easy see that the elevated part of that area of the ear (the antihelix) corresponds to the vertebrae. The internal organs are contained inside of the ear. The lungs and heart are situated in the lower area (inferior cavum concha) and the kidneys, intestines and bladder are represented by the superior cavum concha. With reflexology, you have a 1/2 hour to 1 hour session, with "ear puncture" those tacks apply that pressure to those areas for 4-10 days on average! 

Oh, you want to know "WHY" and "HOW" it works? There are different "beliefs", one set of theory is "energetically" based and is originates from the Eastern part of the world. If you have never taken the time to read about Qi and energy, please do so, it is very intriguing! The second theory, typically known as the European Theory is far more scientific and well, "rational". I love learning about the human body and how we all "work", yet, I am intrigued by the Eastern philosophy as well. I am a very intuitive person, yet, I enjoy science, it makes sense to me. I probably fall somewhere in the middle of the road, maybe I am "EUrAsian" when it comes to medical practices. Ohhhhh, you STILL want to know "How" it works? I don't really know, but it works for me! It may not work for you but It's worth a try! If you need help finding a practitioner that does Auricular Acupuncture, feel free to send me an email and I'll research it for you. 

(This is my Disclaimer!) NOW YOU LISTEN TO ME! Please understand it is not a "miracle cure"! Used in conjunction with exercise, pacing myself and manipulation, I have had favorable results. Your Doc may not be as good as mine! If you are in the Hudson Valley area of NY/NJ, I'll give you contact info so you can make an appointment with my Doctor. No matter what Doctor you are going to see for  ANYTHING, please always get "references" from others...(Others with our EDS issues if you can). You don't need an expert in EDS, you need someone willing to help you and someone to understand. Drugs are not always the best answer!!!! Remember that! 

Why I am back after so long...

I stopped blogging because I was overwhelmed with the fact that I have EDS. In the past few months, I have overcome that. I have decided that I don't have a disease, just a little disorder. I am still determined that I won't let it define me, I will define it. 

A couple of weeks ago I got to talk to my EDS Specialist, Dr. Mark Lavallee for a long time.  We talked "doctorly" stuff and then we talked friend stuff. We talked and talked and talked, it was great and perfect timing, I had a really rough week. Talking to Mark made my month. If you don't know Dr. Mark Lavallee personally or as a Doctor, it's hard to fathom why we ALL love him so much. I know him, admire him and love him and everyone I know that knows him feels the same way. I think we all agree that Mark is an Angel that God put on Earth. I've never known another single person that has inspired so many (literally, many THOUSANDS) of people so immensely. 

After Mark and I talked I thought about blogging again but didn't. Then tonight I saw a post from the mother of one of my Ehlers Danlos friends and I knew I had to start blogging again. My post from earlier has a bit about Emily and her story. It also has a little "story" about my friend Amanda, she passed away in December from Vascular EDS. 


I decided to start blogging again for numerous reasons: *My friend Katie said I should! *Some of my greatest inspiration comes from some of the blogs I have read. *I need a way to "get it out" and talk about it without bombarding my closest friends! *My biggest goal for EDS is AWARENESS and Education, blogging raises awareness and offers education to others. *I want my friends and family to have a general idea of what is going on with me "health-wise", then I don't have to explain it 500 times. 


So, here we go again!


Gentle Hugs!
Ila

2 Young lives, 2 different stories, 1 dear friend gone, 1 friend fighting!

My EDS friend Emily (above)

Emily is 19 years old and lives in Florida, she loves to cook, have fun with her friends and she loves her dog. Emily also has Vascular Ehlers Danlos Syndrome. Since I have known Emily she has had severe intestinal and gastric issues. Over the past several months it seems like she's spent far more time in the hospital with very serious issues than she has spent at home. Emily is a champ, she is young, frustrated and scared but she hardly ever shows that! Instead, she radiates strength, faith and courage. Emily has a smile that brightens the darkest of days, even when it's her day that seems the darkest. Emily and her family have not gotten good news this week. When I read the update from Jody, Emily's Mother, I felt sick. Here is that update. 

6 April 2012

Posted 5 hours ago

Dear Friends,

I am sorry I have not posted updates this past week. It has been a very emotional week for our family.I will start with the good news.Emily is doing as well as can be expected and will be coming home tomorrow.We are excited she will be home for Easter and be with her nieces on this day.The sad news is we have learned that things have changed dramatically for Emily. Her health is declining, and she is now more prone to these infections. They say her gut is leaking hence the infections are coming from her short bowel and the fact her stomach does not work any more.

The week has been long as in fact the talk has been of sending Emily home with Hospice.We are already blessed with the love and support of our family and friends and Emily is already on a Hospice program called Partners in Care.With this program in place she gets an aid, pain management and nursing care.If we go full time to Hospice she will be denied her TPN and of course if we take her to All Children's Hospital when she is very sick as we do now she will have to be constantly discharged and re-admitted to Hospice here in Sarasota as All Children's is out of county. The other alternative is to take her to Sarasota Memorial where they can still be involved.

At this time Emily has to have some control, she is adamant she want's to keep going to All Children's for treatment. So she will stay with the Partner in Care Program. She will get all she needs from them including counselling as will Ian and I.As a most of you know, almost 18 months ago we were told Emily would not last more than 3 to 6 months. Yet again Emily proved everyone wrong.Tomorrow we will bring Emily home and we are going to do everything possible to have some wonderful quality time with her. Emily is such an inspiration and a fighter we are praying and hoping she proves them wrong yet again.It seems we will be spending more time in the hospital, but when we are home we want to see our friends, take her out and let her enjoy herself.She is still insisting on doing her cooking classes even though she can no longer eat and is in love with blow pops and strawberry Icee's.On this note I would like to wish you all a Happy Easter, hug your loved ones, remember to tell them you love them.GO TEAM EMILY:)Prayers and hugs to you all

Jody

The picture immediately above is my precious, wonderful and amazing friend, Amanda. Amanda passed away in December. Amanda had a tough time over the past couple of years but she was in no way giving up! That girl lived life like none other, she never passed up anything fun and if she couldn't find fun, she made some! Amanda never missed a beat, she never let anything get her down, she always fought back harder. Amanda's death was TOTALLY unexpected at the time it occurred, God called her home and our Angel flew away. I think of Amanda (Panda) every day and I say a prayer for her Mom, Dad, Brother and Fiance and especially for her little boy Jai (Short-pants). I miss her and I send my love to her every day, swirling through the stars until it reaches her in all of heaven's glory.


These are two very different stories of Vascular EDS. Please pray for Amanda's friends and family. Emily, on the other hand is fighting with all she's got. Never doubt this little lady, she's defied the odds numerous times! God certainly has a purpose in this girls life. Emily has touched so many people with her strength and courage. I'm so sad to learn of the "bad" news she and her family got this week. However, I am certain, beyond any doubt that God is surrounding her with his immense love and magnificence. I KNOW a year from now, no matter where Emily is or what she is doing, she will still be inspiring people, giving hope, and leading the way. God will be working through Emily and her trials and triumphs....Not only today and next week but for many years to come!

Gentle Hugs,
Ila

Some Photographs.

OI- One of EDS's closest family members! 

I love this quote! I am so thankful that my Doctor doesn't
try to give me a useless pill to try and cover up my symptoms
that can not be covered!

My dear friend Heidi. I wish I also knew her as a Dr but
maybe I'll have that opportunity someday! 

Dr. Rodney, he is the head of the Rheumatology Research Center
In England. I was so honored to spend some time with him and learn learn learn!

Some of my new friends from the conference.
Front: Me, Sweet Molly, Back: Gary-my friend that lives about 20 minutes away!
Let's not discuss the girl in the neck brace! Amazing Paula and Troy Winkler!

Me with Troy Winkler. He's an amazing person!

Me dealing with some issues for Miss Molly!

My dear friend here in NY, Elisa. God bless her for
listening to all of my weird stories, EDS and otherwise! Also with my faux sister-
In-Law, Christina Arce Bagaglio.

The man that keeps me going! Thank you Andy,
You are my biggest fan and I LOVE you!!!

I can still hang!

My Aunt, one of my biggest inspirations. She has severe,
debilitating Rheumatoid Arthritis. You think it stops her? NO WAY!
We talk daily, fight occasionally and love unconditionally. 

I am going to be featured in a poster for EDS Awareness. This is one of the photos,
sorry, they haven't been edited yet. Once they are, you'll only see joints....Hopefully they will
never know it's Ila! 

So, It Has Been A While!

So! It's been a while! When I said I was feeling "overwhelmed" with my EDS diagnosis and grasping it all, I was not kidding! I went through a very tough time just before we moved from Indiana to West Point, NY. Once we moved, I had an even tougher time because I wasn't surrounded by my EDS friends that lived nearby! I attended the EDNF conference in Baltimore last August and just so happened to meet a "local" EDS friend here in NY, Gary only lives about 20 minutes away in New Windsor. I think God knew I needed an EDS friend nearby! The conference was amazing, I met so many wonderful people, Doctors, EDSers and Researcher's alike. My new acquaintances range from a performer on Broadway to a Grandma from Korea and many folks with different walks of life in between! I even got to meet the amazing Dr. Blair Grubb and his super-amazing wife! I met a lady that Dr. Lavallee had spoken with me about, her name is Heidi Collins. Heidi is a Physician in South Bend, she and he children have EDS, her Mother and Grandmother did as well. I also got to see Anne, we shared a room together and spent the weekend laughing until we hurt! The EDS conference in Baltimore really helped to end my "FUNK" that I was in. 


When we first moved to West Point, a friend of mine recommended a Dr. to me, she thought I'd love her. I knew the first day I met her that I liked her but I also suspected that she was not the Doc for me. The second time I saw her, I like her even more but then I never saw her again. I always had to book with her NP because she was overbooked. Well, let me tell you, I did NOT like that NP. The first time I saw her I asked her if she got her degree at Walmart, she was not happy with that at all. The second time I saw the NP, I apologized that I asked if she got her degree from Walmart and told her I was now convinced that she "found" it at the Goodwill store. Geeez, she has to be the MOST incompetent health care professional I have ever met. I stewed about it for a while and then asked my friend that made the first recommendation (she is also a Dr) to make another one. She said, well since you have stopped smoking, you can see Dr. Amnott. So, I wrote him a note and asked him if he thought he could deal with me. 


I was REALLY nervous about going to this Dr. Amnott guy. I'd heard from a few folks that he was just incredibly blunt didn't sugar coat a thing. Well, I'm from Georgia and that's scary to me! I admire that quality in people and I am very blunt and honest as well but I have never had a Dr that was just BLUNT....I have worked with a few, some good, one bad! Well, I met with my new Dr. and knew that I was in the right place with the right Dr. RETIRING? What? Just my luck! Dr. Amnott is retiring from the Army in May, I bet he's got the exact number of days he has left but I haven't counted; it's not very long. Dr. Amnott is a D.O. and if you know me very well at all, you know my philosophy on Docs is that D.O.'s do it better. Please, no offense to my MD friends and family. 


Dr. Amnott is different than any doctor I have gone to, he not only practices medicine and manipulation of joints, he does acupuncture. I've never been a "needle-a-phobic" like my husband and oldest son but I do have an issue with people touching my back. I realized my "jumpy, cringe" problem when I was in Massage Therapy school, when anyone touches my back, I not only jump but I almost cringe as well. It's odd, I know. Well, that is my only "issue" with acupuncture, he calls it "anticipating" and says that when I anticipate, it makes it more uncomfortable. So, I am trying to work on this a lot because I want to love the modalities of medicine that are beneficial to my body. Dr. Amnott also does acupuncture in my ear, I hated it the first time but the last time he did it, I hardly felt anything and the needles have been in for a week. I can really tell that the acupuncture is helping me and I am so grateful! I had it done today and I didn't jump, cringe or anticipate it as much and guess what? It really almost felt good. 


Manipulation has always been one of my favorite things. I LOVE IT LOVE IT LOVE IT, even when I am only mildly "subluxed" or "misaligned", it still makes me feel so much better...even if I don't crack a smidgen. I manipulate myself numerous times a day, I have to or wouldn't make it through most days but it's so much more effective when someone that knows what they are doing does it. However, I do hate that manipulation is very temporary for me, usually less than an hour....I usually scoot right back out of place.  


My newest adventure begins one week from today...(sit down Katie), I am going to have Prolotherapy done. I am nervous and I know it's not going to feel good but I really do think it will help me in the long-run. We EDS people supposedly have a "super-human" pain tolerance. Right? Yikes! It'll be fine, I have to work on controlling my reflexes this week so that I don't jump, cringe and anticipate! I'll keep y'all updated on the prolo party! Katie, come and go with me please! Maybe next time right? 


Finding a Doc that is so amazingly wonderful makes me feel a little guilty. I think I have been to see this Dr more times in the past couple of months than I have any Dr ever. My primary Doc in  Indiana was hilarious but she was always atleast 90 minutes late and she didn't believe me for so long when I would tell her that something was "wrong" and would beg her to send me to a specialist or investigate further. I'm lots of things but stupid is not one of them, I know when something is not right with my body. I usually see my Doc now about every 7-10 days and as I said earlier that I have never been to a Doc that much. I am so blessed that I found someone that is helping me and not only that but someone that inspires and motivates me to help myself. I had prayed and talked with God extensively about him leading me to the right Doctor, it took him a bit to decide on the right one but he answered my prayer, just like always! Thank you God, you haven't let me down yet!


I did try Physical Therapy here but decided that I don't necessarily need PT (unless Terry is involved), I need a gym! Other than a gym, I need to eat better, quit smoking my e-cigarette, drink more water and less Coke. I also need to blog more, it really helps me deal with it all! I need to utilize my faith more...you know what I mean, question less and jump more! I need to set daily, weekly and monthly goals. I am that girl that my Mama warned me about, I want it all right now! I love that about myself but it also drives me crazy, I get overloaded very easily. 


So, in a very long-winded explanation I have let you know that my pain is being managed very well. When I left the Dr today I realized something, I have not had one of my killer headaches in a couple (maybe a few) weeks. That, my friends, is simply incredible! Yippppeeee! I am not by any means pain-free but I am a good 25% better than I was 3 months ago. NOW, pain sucks but has never been my biggest issue. My least favorite friend of Ehlers Danlos is Dysautonomia. I seem to have "flares", it's never completely "gone" but sometimes it is far worse than others. I absolutely hate the dizziness, tachycardia and most of all the fatigue. If you have EDS or Dysautonomia, you know the "tired" I am talking about, you hit your brick wall for the day but you only went from the bed to the shower! The kind of killer "sleepy" where you feel like you need toothpicks to hold your eyes open and that's after you thought you had 8-10 hours of "good" sleep! It's so frustrating and discouraging but this to shall pass! My Dr. is pretty perplexed by it as well and I am having a sleep study done in the very near future. Please pray with me that we'll solve this mystery soon! I have way to much spunk to be tired so much. Wait, I have an idea for a new song....(air guitar please!) "TIRED to the bone". 


Another NY update, Cole has also been diagnosed with EDS type 3. For those of you that aren't my friends or family, Cole is my oldest son, he turns 8 in about a month. He's a great kid, so smart and sweet like his Mama! I'll update on that as well. 


So, I'll update more on our adventures later, just wanted to give a little (long) overview of what is currently and has been going on in the world of EDS medicine and well-being for me. 


Gentle Hugs!


Ila