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!

Continued....

So, the wait was on, I was waiting for Dr. Lavallee's staff to call and set up an appointment for me to see him. They called in January, I'll never forget that day. We were in Memphis for Andy's best friends wedding, that would make it mid-December that they called. I was so disappointed when they set my appointment for April. I remember thinking "I don't want to wait until April to have answers". Well, I decided that I had to be patient! The Heinz commercial used to say "The best things come to those who wait"! In February as I was filling out paperwork for Dr. Lavallee, I called to ask a question. I spoke with his nurse Josh and he told me that I could actually come in the second week of March, I was so excited! 


I was (am) so sick of calling my best friend, Valerie, and her husband Matt and asking questions about what they "think" might be wrong with me. The past few years have been filled with countless phone calls that many times consisted of nothing more than questions like "do you think this is normal?" and "How do you feel when you wake up in the mornings?" You know, probably the normal questions that people that know something is wrong but don't know what ask. Valerie, like me, has a degree in Biology and Chemisty (but she's a heck of a lot smarter) and Matt, her husband is a nurse. Matt's not just any nurse, he's one of the super nerds that we all hate! You know, they read something one time or just merely sleep on the book and retain all of the information for their entire lives. When Dr. Straniero mentioned EDS to me that day in his office, I called Val and Matt and they immediately started to research. When Val called me back she was blown away "Ila, this explains you to a T, I think they wrote this description about you". That's when I kinda "knew" I had EDS, yet, I had no clue. 


My life is a very interesting one, people that don't know me or my family situation, those outsiders looking in, may call it dysfunctional...I call it BLESSED! I'll expound on this on my next blog, it is very interesting, so don't miss it!


The reason I bring up my "life" as being very interesting is because I believe that God puts people into our lives for reasons that we can't even imagine. I met my biological father when I was 16. My maternal grandparents adopted me at birth, I didn't meet my "father" to find a Daddy, I already had the best Daddy in the world, I called him "Papa". I have always been a curious person, I like to know the answers and I love to investigate to find them. Research is on the top of my list as things I love to do! Well, we found my "father" and I met him the day after Thanksgiving in 1992. He is an interesting fellow to say the least and until this day I have very little contact with him. When I met my father, I didn't necessarily fall in love with him but I instantly fell in love with my "Stepmother" and with my 1/2 brother. My Stepmother's name is Betsy and we just had a "click" from the second we met. I always tried to visit Gerald (my father) when I knew Betsy would be there. Betsy is a Doctor, so she was often on call or busy with patients. In 2000 I called and talked to Betsy one night and she told me that she divorced Gerald and I was so sad....I didn't want to loose Betsy, I loved her more than I ever even let her know. 


Well, about 2002 I would call Gerald and ask him how I could possibly get in touch with Betsy and he never cared to share that information. He was to busy bad-mouthing her and talking about how crazy she was. I looked and looked and we moved to Europe for 4 years in 2005, I just gave up. When we got back I asked him again and he said she was in Washington State, I scoured Washington State and no Betsy. Well, one night a few months ago, I was playing on Facebook, where I had looked numerous times before and I found her. I sent an email, realized before she even got that email that she was still in Florida and I could not help but let my fingers do the walking. I called Betsy with tears streaming down my little face, I just could not hold back the emotion. When she answered and heard that it was me, I think she felt the same way. That night we talked for hours, catching up and just being giddy that we were on the phone together! Toward the end of our conversation Betsy mentioned that she lives in excruciating pain and I said "Betsy, what in the world?" I about wet my pants when she said "I have Ehlers Danlos"! I squealed "I do too!!!!" and she whispered a calm "I know". "You what???" I asked! She told me that she was 99% sure I had EDS the day we met and my father and I excitedly shared our "circus tricks" that we could both do because of hyper-mobility. Gerald has EDS as well but his is asymptomatic, lucky man! So, Betsy and I talked about EDS for a long time....She talked, I listened! Betsy is an incredibly intelligent woman and compassionate Doctor. I was just so thankful that I had someone that I love so much that could relate to me and me to her. 


Even talking to Betsy and hearing her tell her EDS stories and experiences did not prepare me for what I was about to learn. 


To Be Continued in #3.....