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…

Advertisements

I Can Still Make A Difference

In light of everything that has happened this semester, I’ve been working to come up with ways I can make a difference in this world without a college degree. Here are some ideas…

  • Become a guardian ad litem
  • Establish a restaurant that feeds the homeless
  • Foster to adopt medically fragile children & teens
  • Fundraise to pay for surgeries for children whose families cannot afford it
  • Get my CNA license
  • Help runaway teens reunite with their families or become independent/emancipated from them
  • Make my home into a shelter for homeless women & children
  • Publish book about life hacks for tubies– for tubies by tubies
  • Start a nonprofit organization like Chronic Lifestyle Understanding & Education (CLUE)
  • Start an orphanage or group home in conjunction with an animal shelter so each child can have a pet
  • Start support groups for chronically ill teenagers & young adults
  • Throw birthday parties for children in the hospital
  • Volunteer and/or work at a nursing home
  • Volunteer for Crisis Text Line
  • Work as a missionary

To be continued… 🙂

Spoonie Sisters!

Screen Shot 2017-03-12 at 4.53.23 PM
Spoonie Love ❤

This evening, I finally got to meet my beautiful, sweet, strong spoonie sister Nicole! We’ve ‘followed’ each other & talked online for almost two years now, but we never got to meet in person despite living only a half hour away. She is INCREDIBLE– truly one of the most beautiful souls I’ve ever met. She endures so much each & every day, yet somehow manages to find joy through it all. She is a superhero! She’s been a huge encouragement to me throughout this crazy chronic illness journey. My heart is so full after getting to hug her in person! We literally just hung out on her couch for like three hours, talking, laughing & commiserating about anything & everything. We could just BE- the good, the bad & the ugly- without having to explain ourselves or wear a fake smile. We both needed this so much. I’m beyond excited for our future spoonie adventures! Love this girl SO stinkin much!

Feeding Tube Change #3

I am scheduled to take my Medical Terminology final exam today, so doing the procedure without any sedation!  Definitely not excited for the procedure (last time was really painful), but l am certainly looking forward to leaving here with a brand new, clean, fully-functioning tube!  Trying to study prefixes and suffixes for the exam and not let my nerves get the best of me.  Hoping all goes smoothly!

image
Waiting for a feeding tube change at Duke Raleigh Interventional Radiology

 

119lbs??!

Guess who now weighs 119 lbs??  This girl!!  Wow.  I haven’t weighed this much in years.  None of my pants fit anymore!!  But hey, I’m not complaining…that is a great problem to have.  I’ve been working so hard to get to this point.  I’ve had this feeding tube for 9 months now, and it has slowly but surely given me my life back.  So thankful!

I Excel In… (No Particular Order)

1.) Pretending to be happy

2.) Talking too much and too fast

3.) Smiling through pain that would cripple others

4.) Caring about and for others

5.) Over-analyzing like…everything

6.) Remembering things I should probably forget

7.) Forgetting things I should probably remember

8.) Isolating myself

9.) Staying up all night

10.) Navigating while blind (#MigraineProbs)

11.) Writing neatly

12.) Appreciating the beauty in the little things

13.) Mental math

14.) Holding back vomit while in public

15.) Adapting to my environment/life circumstances

16.) Making people think I’m crazy

17.) Getting concussions

18.) Swallowing my fears

19.) Getting overly-attached to people

20.) Learning and absorbing medical information

21.) Not texting or calling back for days on end

22.) Misplacing obligations

23.) Editing papers

24.) Losing everyone and everything I’ve ever loved…

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. 🙂