Just realized I never shared this! Check out my amazing spoonie sister Em’s blog post about our experience attending Duke Children’s Hospital Prom…and all that went on ‘behind the scenes’ to prepare and recuperate… 🙂
Last Saturday (April 22nd) Duke Children’s Hospital held their very first PROM! I had the amazing opportunity to not only attend but I got to attend with 3 fantastic ladies that I have gotten to know over the last year online! We share quite the list of medical diagnosis’ and life experiences.
Prom prep started about a week before the actual prom. Cancelling doctors appointments, scheduling doctors appointments, ER visits, lots of medicine, and rest rest rest!
Pre-prom prep (IV fluids, Nutrition, pain meds, steroids and prayer!)
While we got ready for prom before getting our dresses on and doing our make-up we pre-medicated and talked about how much we get it. There was no need to explain anything or feel ashamed because they live it too! (Though I so wish none of us had to, it’s nice to not feel so alone).
We all meet online in…
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May is Ehlers-Danlos Syndromes Awareness Month! I plan to put together an awareness video eventually…but in the meantime, here’s a sneak peak at some weird EDS hand movements. Notice how my hand almost looks like it’s turned inside out? That ‘flying swan’ hand position is like our EDS gang sign.. 😉
Earlier tonight, I went to a house party with my roommates. I hadn’t been feeling well all day and I really did not want to go, but it was the first time all three of us were going out together since Halloween and I didn’t want to be a party pooper.
It turns out my gut feeling was right and I should have stayed home, as I got really sick at the party. There were so many strong odors, loud music and yelling and bright flashing lights…
The room began to spin like I was on a tilt-a-whirl. My head was splitting…my heart was pounding, racing around 180 and skipping beats…I was shaking, fighting not to throw up…and I was teetering at the point of pre-syncope where I was sure I was going to lose consciousness.
I ended up running outside to the front yard and sitting in the grass. My throat was beginning to close, and it was getting very hard to breathe– I needed an EpiPen.
But this story isn’t about getting sick at a social gathering and needing to go home…unfortunately, that is a pretty common occurrence and nothing worth writing home about… 😉 This is about what happened after I realized I needed to leave.
As I searched frantically through my tube bag, I realized I left my keys at another apartment at College Inn. I ran back inside to where my roommates where playing beer pong. Standing there, shaking from epi and further set off by all the overwhelming stimulus, I explained the my situation to them.
Lucie held my arm and tried to help me come up with a plan. It was difficult because she was a little drunk and the music was booming, but she was trying her best and eventually suggested I use her keys and just leave the apartment unlocked for when she and Hannah returned later. It wasn’t an ideal plan, but we figured out a way this could work.
After thanking Lucie profusely, I was ready to run out of the house when Hannah loudly interjected, “You’re leaving? But you look FINE!”
I explained to her that I just had to use an EpiPen, I felt like I was going to pass out, and I was NOT fine. She rolled her eyes, and then rudely proceeded to touched all over my face and neck saying, “Your face is not even swollen!” and making a bunch of similar comments, callous and even accusing. She ended her unsolicited assessment with, “You’re fine, you just don’t want to stay at the party. Come on, you told me that at the beginning.”
Not only did she brush me off and only begrudgingly offer advice, rolling her eyes every time I repeated I could not hear her over the music and the ringing in my ears (that was signaling I was about to faint)…she even stopped Lucie from trying to help me!
After helplessly trying to explain my health situation a few more times, I couldn’t take it anymore and ran outside. I needed to get an uber and get out of there fast.
When they came outside with me, where there was no loud music or crowd of partiers, it became obvious that I wasn’t lying about or exaggerating my situation.
Then Hannah was like “Ohhh, I thought you were faking it! I guess you’re not!” and then and ONLY then did she care, stop making rude comments, and proceed to try to help me.
The lights and the loud, crowded party atmosphere made me feel so scared as my body was failing me…and things certainly would have been a lot scarier (perhaps even escalating to needing an ambulance) if Lucie were not there. I am so thankful for her.
Now, I understand that Hannah, too, was a bit drunk. And I’ve seen her drunk multiple times before & know that she gets really wrapped up in the moment…but I cannot help but feel a little hurt (especially in this fragile extra sickly epi’ed-up state I suppose, haha). I don’t mean to be emotional, but Hannah’s callousness and aggressive assumption that just because I ‘looked’ okay in the moment, meant I must be fine and merely “faking it” really, REALLY hurt my feelings and made a bad situation much worse…
I got home and cried so hard. It still stings to think about, honestly.
I am not going to hold a grudge…not just because she was slightly intoxicated, but because continuing to dwell on it won’t help anyone. I will be fine and bounce back by the time she & Lucie get home from the party…
But interactions like this one tonight are the reason we desperately need more awareness about these complex, debilitating invisible illnesses. We must stop accusations like, “But you don’t look sick” and save others from having to endure the judgement, mean comments, and unwillingness to help that I faced tonight.
This is definitely not in reference to Shannon (she’s not usually like this & she’s my friend) or this situation at all…but as we spoonies like to say: I don’t look sick? Well, you don’t look stupid, but ya know…looks can be deceiving.. 😉
Thanks to the amazing Michaela Shelley for yet another great Feeding Tube Awareness Week video this year!
Happy Gastroparesis Awareness Month, everyone!
(Link restored as of 4/2/17) 🙂
A sweet spoonie sister, Michaela, made this awesome video for Feeding Tube Awareness Week! This is my fight song.. 🙂
Are you looking through our charts, our lengthy and complicated charts, wondering what you got yourself into? Yeah, we know. It’s OK. We know we aren’t the type of patient most doctors like to take on. We can’t be easily fixed and we know that can be disheartening and frustrating for you. We get disheartened and frustrated, too. Hey, look at that! Common ground. Not a bad place to start!
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
I truly appreciate this doctor’s honesty. See next how my spoonie sister Catherine Richardson responds!