Rare Disease Awareness Day!

Zealous

Extraordinary

Brave

Rare

Awe-inspiring (I refuse to use awesome”)

These are the words that describe my friends. They are absolutely incredible people! They are fun, loving, loyal, vivacious, hilarious, compassionate, and, well, as I have said before, I could go on forever!

In honor of rare disease awareness day, shall we talk about what is behind those eyes of your sick friend?

I don’t care what ails you, we are bonded. We are bonded, because we know the pain… Both emotional and physical; we know the frustration of dealing with doctor upon doctor. Let us share with the “other side”!

Readers, let me explain to you first of all, what it’s like to be sick, and not know it.

Growing up, I remember always having episodes from day to day. I remember that I would be doing chores, and all of a sudden, as I was walking up the stairs, I would get this burning in my head and I would feel like I coudn’t breathe or see or stand. Suddenly, my whole world would be spinning. My mom, assuming I was being a lazy 11 year old (ever heard of one of those?) would tell me to get a move on. Why should she think anything else? I remember that I would have attacks at night, though, at the time,  I thought that I had woken from a nightmare that I couldn’t remember. I would wake up, sweating, heart racing and feeling absolutely terrified. My head would be spinning and I would be hyper-ventilating; every movement that I would make felt as though it was magnified by ten thousand… A whisper for help sounded like a scream! So, I would lay as still as possible until the worst of it had passed, and then run down the hall to my mom and dad’s room, typcially crying, but always absolutely terrified. Sometimes, this would only happen once a month, sometimes several times a week, but I remember one instance in particular… Because it was on my birthday. I believe it was my 12th birthday and I was having a sleepover. My mom got my friends and me all set up in the first floor living room, before going of to bed. Of course, my friends and I spent hours gabbing away in the dark and listening to books on CD (we were so cool)! As always, I was the last to finally doze off. Then it happened… I jumped awake, and I was sweating, heart racing, terrified… “not on my birthday! What if one of them (my friends) notices!? How embarrassing.” I couldn’t have been more fortunate that my dad had wondered down to the kitchen, so I yelped for him.  “Daddy… Daddy!” “What’s up, baby doll? Why you still up?” “It’s happening again.” “What?” “I think I just had a bad dream.” Even at that age, I knew I probably sounded crazy.

I remember one Saturday morning when I was 12, I left the living room from watching cartoons with my little sister to get myself some cereal. As I stood up, I felt my head start to burn and the blackness to close in around my eyes, as it had so many times before. Next thing I knew, I was waking up, sitting on the floor with my neck and chin throbbing and my little sister standing over me, saying “what happened!? Are you okay!?” As far as I knew, I was just fine, so I continued with my day, though I was exhausted.

I remember  that I was “flexible” and “double- jointed” my whole life. I was always showing my friends new tricks that I had discovered I could do! It was entertaining at least! As a pre-teen, I saw nothing weird about myself and I felt no real pain until high school. After I played basketball as a freshman and suffered aknee injury, I found that my knees had an almost permanent pop to them. My knee hurt long after it should have healed and I found myself extremely frustrated. I hardly played anymore games that season. (Meh… I wasn’t that good anyway.) As I got older, I started to brush off any other symptoms as just normal. I figured that I was just complaining too much and probably weak.

When I started college, I was so excited to be studying music! I even came to school early for a marching band scholarship, even though it was something that I had never done before! Go ahead… Allow the chuckled and giggles because I’m a band geek. 😉 my husband and I even met there, so snicker away! Done? Okay… Let us continue… As marching band season switched from practice and learning to performing, I started to notice the most intense pain in my back and neck and went to the doctor. Upon telling him about my previously diagnosed scoliosis, he perescribed me some pain meds and sent me on my way. Unfortunately, I had an allergic reaction to them and was unable to take them. So I adapted to the pain. As classes went on, I found myself waking up some mornings almost literally unable to get out of bed. If I wasn’t exhausted, I was in pain. People who were supposed to be my friends didn’t believe me and said that I was lazy and a hypochondriac. So I suffered in silence. After my car accident my sophomore year of college, I began to feel more pain than I ever imagined possible. I couldn’t stand for very long and I woke up wanting to scream. Upon telling a friend that I was dealing with some chronic pain, she said “you know it’s all in your head, right?” This cut me deep. In hindsight, I wish that I had punched her in the face, waited for her to say “ow” and then tell her “it’s all in your head, deal with it”! I heard this from doctors even, and that was the MOST infuriating thing of all! All I could think was “I AM NOT CRAZY!!!!”.

Now, readers, allow me to share what it is like for a zebra to see a doctor…

If you asked me, the most terrifying thing that I have probably ever experienced was a moment with a DAD… Dumb @$$ Doctor. No, wait… Two of them who said the same exact thing to me on two separate occasions. When I was first trying to discover what was going on with my heart, and prior to my POTS diagnosis, I went to a doctor who specialized in Internal Medicine and Cardiology… Allegedly. I explained all of my symptoms, and he checked my pulse (which was high) and my blood pressure (which was low). After all of this had transpired,  he turned, looked at me, cocked his head to the side and said, “hmmm…. I don’t know what to do with you.” I also heard this recently from a doctor who knows nothing about EDS before he wrote another doctor about me and said that believes me to have a hypochondriacal neurosis. Lovely, yes? So kind. It fills me so full of hope and confidence. No… It’s scary, disheartening and maddening to deal with these types of situations. It’s something that you simply can not understand until you have faced it on your own.

Today… I have a different view of doctors – unfortunately, but I am determined to make the next one listen to me and HEAR me! Do not pity me, for it will do no good for anyone. Rather, I ask that you help me spread the word! Until doctors understand that these rare diseases are worth really knowing about and teaching about, my same experience will happen to more and more people. I hope I never have to hear another story like mine. Sadly, I know I will. So, we zebras call on you! Yes you! Reading this and scratching your head in astonishment. Share my story, share a friend’s story. If you’re not a talker, share my blog. Anymore, everyone is finding a cause to support. What’s yours?

I apologize for cutting this short, but my fingers hurt! Share some love with someone!

Happy Zebra Day! 🙂

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