4 Years Ago

976542_4876819714599_1319194098_o.jpg

I cannot believe I graduated high school 4 years ago.  Wow.  Feels like lifetimes ago & yet just yesterday in so many ways. Looking back on pictures always fills me with an almost-suffocating sense of nostalgia and…well…emotion, I guess. Not happiness or even sadness, per se, but an overwhelming feeling that I cannot quite seem to name.  Looking at this picture, I am taken right back to that day– I experience the memories with all of my senses– & I am left feeling hollow yet full to the brim, tears streaming down my cheeks & smiling all at the same time…

The Reality of Chronic Illness: Prom Edition

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… 🙂

Through the Peaks and Valleys

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.

Pre-Prom Prep!

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!)

image2.JPG

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…

View original post 771 more words

“You’re So Brave!”

There are many instances of my life that haunt me. Rhetoric that plays over and over in my head like some sick tape I cannot escape. Actions that color my dreams, jolting me from nightly slumber. However nothing makes me quite as sick as the innocent words of my then 13-year-old sister, remarking on my self-harm:

“…I tried [to cut myself] but I couldn’t do it.  I wanted to but it hurt too much.  You’re so brave!”

Hearing those words took my breath away.  I was 14 when I started- not much older than she.  It was my heavy, shameful, long sleeves in July secret for 3 miserable years.

Cutting was not brave, and that self-destructive path was certainly not what I wished to model for my little sisters. It’s been more than 4 years since she uttered those words, and while they still shake me to my core, they also push me to keep fighting, to not give in to temptation, and to show her what bravery truly is.

1 Year

It’s been 1 year since I got kicked out of my parents’ house.  This year has been a wild roller coaster of ups and downs (more downs than ups, if we’re being honest here)…but I have grown so much.  Getting kicked out was hard…and being guilt-tripped and begged to come back was even harder…but I made it.  I didn’t give in and didn’t turn back.  And now my relationship with my parents is better than it has been in years.  Things were really rough for a while, but we’re all 1 year stronger.  Who would have guessed?

More Like Falling In Love

From August 25, 2015.

Had moved into apartment all by myself, while really ill, and the place was trashed.

It was trashed BEFORE I even moved in, because my mother asked them not to clean or paint (because I have Multiple Chemical Sensitivities). There was literally blood smeared around the bathroom and nasty stains on the carpet and goodness knows what all over the walls and desk.

Worked really hard to get it together- again, BY MYSELF! – despite my health and my body’s objections. Took me hours (though the time-lapse makes it look like seconds!)…but I did it. I needed my room to be a place where I could think…study…breathe…function. And I had a lot of people to prove wrong.

As of now (9/7/15), the room looks COMPLETELY different. It is beautiful and matches and the carpet is even scrubbed and new-looking. It’s even organized 🙂

The point of the beginning of this video?

I overcame everything and did what I needed to do…turned the pain into power…and was successful. Was the room perfect? Not even close! But did I make a lot of progress? YES.

Difficult does not equate impossible.

Small victories are still victories. 🙂

Giving In Is Not Giving Up

This week I got my first ever wheelchair.  We found it on Craigslist and it just so happened to be the perfect fit for me.  Years ago, if someone suggested I’d need a wheelchair, I would have laughed.  But now?  It’s become reality.  One of the major challenges of having Dysautonomia is that I never know when I barrage of unpleasant symptoms will hit me.  I might think I’m okay, then a second later find myself lying on the ground.  My blood pressure tanks and I faint, often without warning.  Sometimes my legs are too wobbly to walk or I lose feeling altogether.  Even on ‘good days,’ I can only walk so far before I am overcome with crippling fatigue and pain.  As you can probably imagine, this makes going out in the ‘real world’ and doing ‘normal’ things pretty difficult…

My mother tells me that I shouldn’t accept this as my reality…that if I own it, I will never escape.  At first, I really dwelled on her words…but now I can boldly say I disagree.  Honestly, my using a wheelchair has been harder for others than it has been for me.  People either pity me or feel uncomfortable seeing me using it.  I wish I could tell people not to feel that way…I mean, I do not feel sad about it or feel sorry for myself.  It’s a pretty easy transition, and has actually allowed for a better quality of life.  I understand where my mother is coming from: to some, it may appear to be a step backward.  But it is quite the contrary.  It’s a step forward- an opportunity to regain some control over my life.

I am constantly embracing new realities and trying to adapt to them the best I can.  I am learning how to continue living and thriving despite unfortunate circumstances.  The past few weeks, I’ve learned that “giving in” is NOT giving up.  Accepting new ways of life is not losing control…it is gaining it.  Whether it’s standing, sitting, walking or rolling– I plan to live my life to the fullest.