Urgent Care Meditation

If we have to be chronically ill, we should at least be granted a ‘get out of jail free’ card when it comes to colds, stomach viruses, strep, the flu, etc… ugh. Oh well. Feel even crappier than usual, but there’s no use getting upset over it.

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Breathe in strength; breathe out bullsh*t” 👌🏼

 

I Cannot Help But Feel Cautiously Hopeful…

I had a great time with my youngest sister yesterday!  We haven’t gotten to spend much quality time together since my family was torn apart in 2012…but recently we’ve been bonding– amidst and despite our family’s dysfunction– and I can’t even tell you how much its meant to me. We had a really cool conversation around 2am. It started when she asked about my feeding tube. Not in an “ew gross” or otherwise insulting way, but she genuinely wanted to know what “happened” and why I went from being a healthy, normal kid to a sick teen/adult. She asked about the ins and outs of Ehlers-Danlos Syndrome and how it affected/will continue to affect my life. The whole conversation, never once did she make a judgmental remark or tell me to stop talking. Despite living with me for extended periods since I became sick, she honestly did not know much of anything about my illnesses until that point, and it was truly a sweet and special moment for me…although that may sound weird to some. Prior to recent weeks she and my other sister Kerian have had nothing but nasty, degrading comments, spoken with the intent to hurt me. And they’ve succeeded. Both can be incredibly mean-hearted and they know how to be manipulative and hit a person where it hurts (especially Keri). But this conversation with Bre tonight, plus all the fun we’ve had lately talking and joking, driving around, swinging at the park, watching Supernatural, and just being sisters has my heart so full: I cannot help but feel cautiously hopeful. I find myself praying and pleading with God that this lasts. Regardless, I am thankful for these past weeks and I love my lil ginger sis.. ❤

4 Years Ago

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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!)

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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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Nobody Wins When Everyone’s Losing

You know those songs that just capture your attention, reach into the depths of your soul & shake you to your core?  Yes, that was a very dramatic introduction– I’m aware. 😉 But this particular song, “Not Meant To Be” by Theory Of A Deadman is definitely one of those songs for Keri, Bre & I. When everything was in a chaotic spiral & we would find ourselves so far in Borderland we didn’t know that we’d ever again see the light, there wasn’t much that could help us (or, anyone caught in the path of the storm). But this song– one step forward, two steps back– every single word is/was SO relatable & relevant to our situation. And I’m not sure if it’s that it empowered us or simply validated our feelings, but somehow, singing it always made it easier to breathe.

It’s never enough to say I’m sorry
It’s never enough to say I care
But I’m caught between what you wanted from me
And knowing that if I give that to you
I might just disappear

Nobody wins when everyone’s losing…

[Chorus:]
It’s like one step forward and two steps back
No matter what I do, you’re always mad
And I, I can’t change your mind
I know it’s like trying to turn around on a one-way street
I can’t give you what you want
And it’s killing me
And I, I’m starting to see
Maybe we’re not meant to be

It’s never enough to say I love you
No, it’s never enough to say I try
It’s hard to believe
That’s theres no way out for you and me
And it seems to be the story of our lives

Nobody wins when everyone’s losing…

[Chorus]

There’s still time to turn this around
You could be building this up instead of tearing it down
But I keep thinking
Maybe it’s too late

[Chorus]

It’s like one step forward and two steps back
No matter what I do, you’re always mad
And I, baby I’m sorry to see
Maybe we’re not meant to be…

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… 🙂

I Donated My Hair!

Chopped off 14 inches of my hair to donate to make wigs for kids battling cancer!! My hair hasn’t been this short since I was 13. I didn’t realize how much hair weighs, especially hair as thick as mine…I feel so much lighter! This new style is gonna take a lot of getting used to, but I am very excited to be able to give my hair to such a good cause 🙂