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

Jump For Joy

Connecting

Just after I was diagnosed, I met a girl through her blog, her name is Ann. Ann has been an inspiration and wonderful with answering all of my questions. She is local and I am so thankful that we met, she's a great lady with an amazing outlook. I also met Katie through her blog, Katie has inspired me a bit but even more than that, Katie has given me someone that I relate to. I cried for hours after I read her blog, not only because it broke my heart, but just like with Dr. Lavallee, she knew me, amazingly and oddly enough, our lives and EDS had taken much the same "path". Don't get me wrong, Katie's POTS has been far meaner to her than mine has, my heart almost breaks for her. "ALMOST"! You say? Yes, almost!

Katie is a teacher, she went from training for a 1/2 marathon to a cervical collar and wheel chair in less than 3 months. You think this stopped Katie? HECK NO!!! Katie has been in therapy since January and is also having Prolotherapy done. The Prolotherapy looks excruciating but she thinks it is helping. Something is helping her, she rarely wears her neck brace and has only used her wheelchair a couple of times in the past 2 months. We were giggling the other night on the phone, talking about how when we are at the grocery store, Target or anywhere else, if we get dizzy and have a POTS moment, we just sit or lay down. Yes, when your autonomic nervous system is "confused" like ours, it doesn't matter where you are or what you are doing, if you feel it coming on, you get "down" before it takes you "down"! I'm not embarrassed by it, someone with me may be but oh well, they'll get over it or not tag along to the store with me ever again.

Ann and Katie have been amazing for me. As informative as Dr. Lavallee was and as many questions as I asked, I still have about 250 new questions a day. Even after my diagnosis, I didn't realize exactly just how much this disease had taken it's toll on my body and life. I call EDS/POTS/LUPUS  a singular disease because I consider EDS the big umbrella and the POTS and LUPUS fall under it. I am not an ignorant person, especially when it comes to the body. After college I went to massage therapy school and worked in healthcare for many years. Learning about the human body and mind is one of my many passions in life. Still, I  honestly thought it was normal that people's feet hurt when they walk, I thought that everyone had excruciating knee pain when they sat for a while and got up. I thought that most every person in the world had pain when they woke up in the mornings. I thought that any person that moved furniture and such ached like there was no tomorrow. I did always think the issue with my ribs twisting and turning was odd and I hate the pain but I just thought that was a little more of Ila.

I hope nobody is offended by this story, but I think it is hilarious. A few months ago I got really bummed one day when I was getting dressed. I had excruciating back pain, like most days, and I had to go "out" for work that day. I do a lot of my job from home and am so thankful that my job allows me this luxury. As I was dressing, I caught a glimpse of myself in the mirror and was SHOCKED to no end! My left breast was sagging, big time! I never thought my breasts would sag, there's not enough of them to do that! Well, I was bummed but thought, "oh well, I am 35, gravity is taking it's toll but it needs to pull that right one as well so they will be evenly sagging". Well, after I met Ann and we talked, she was talking about her SI joint subluxing and popping out and I thought "ouch". Well, I just happen to have a good friend that is a D.O. and he and his family just happened to be visiting with us that weekend and I had him adjust my lower back because I was in excruciating pain. It felt amazing and even later, I was feeling like a million bucks, he adjusted my entire spine and pelvis. Ahhhh, heaven! I was getting in the shower that night and looked in the mirror at my sagging breast and it was not sagging at ALL. OH GOD! It hit me like a laughing loo loo, my breast was not sagging, my pelvis, hips and SI joint were "out" and that made my body "uneven"....therefore causing the appearance that my breast was sagging. How funny is that?

It's the little things like that which make me realize how much EDS has effected my body and I didn't even realize it. I truly thought everyone was pretty tired in the morning and that I was just really really lazy and couldn't wake up. Even when I woke up, it took me forever to get "moving" and it still does, but now I know why and what I have to do about it. I am so grateful to have Ann, Katie, Dr. Lavallee and last but certainly not least, my Stepmother, Betsy to share with, laugh with, cry with, research with, hope with and learn with.

Speaking of knowing what I have to do about it....I've gotta get moving, I am getting my little boy to the bus and going on a walk!

Since My Appointment

Since my appointment with Dr. Lavalle a couple of weeks ago my emotions have been a roller coaster. I have tried to collect medical records from years past, not only mine but those of my mother and paternal uncle as well. My mother died when I was 13. She was a nurse and had hepatitis. I always assumed and was told that hepatitis was how she died, but who knows, Papa went to check on her at her house one morning and found her dead. I all of a sudden started to consider the fact that maybe she had Vascular Ehlers-Danlos and that was what led to her death. I haven't found any medical info of hers yet but I will keep looking as time allows. My paternal Uncle died of a heart attack the day before he turned 31. I never knew him, not only was it before I was born, it was on my "fathers" side of the family. If you remember from previous posts, my Mother was not married when she had me and my Grandparents, Mama and Papa, adopted me when I was born. I met my "Father" when I was 16. Well, I got in touch with my "Uncle's" wife and talked with her about Donald's death. She gave me the information from the coroner's report and autopsy, his death was due to a weak pericardial muscle. Whew, that was good news, nothing was documented that even suggested an aneurysm or dissection. 
I don't know what happened to me in the past few days, I seem to be having a hard time "wrapping my head around" the fact that I have a rare disease that there is no cure for. This is me, the lady that was ecstatic when the doctor told me that there "is no magic pill" and that he could not fix me but that I can "fix" myself. I bounced around for 2 weeks singing "If it is to be, it is up to me!" What happened? I think reality is starting to set in. Now I am thinking, "Oh wow! I can't believe this! I knew something was very wrong but I never imagined it was Ehlers-Danlos, POTS and Lupus!" My "fix" is physical therapy and lots of time in the gym. Now since I stopped gymnastics, my time in the gym was spent walking through to go to the sauna or maybe riding a bike for a few minutes. Big changes are taking place in my life and they are life-long changes! I am excited about these changes but man oh man, I am overwhelmed as well!