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!
