Today Is My 2 Year Tubie-Versary!

Just realizing today is my 2 year tubie-versary 🙂 Lately I’ve been finding myself discouraged by setbacks…but looking at these pictures I cannot help but smile seeing how far I’ve come since then! Love that my dad captured the pure joy on my face when I woke up from anesthesia just in time for pet therapy (and before I realized just how tough my recovery would actually be, lol). Here’s to pressing on & continuing to make the most of the life I’ve been given!

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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.. ❤

Crying Is Not Weakness

It’s been exactly 5 years since I wrote this piece & posted it on my old blog. It’s crazy how this feels like ages ago & just yesterday all at the same time. I’m not quite where I want to be yet…but I have truly come so far.. 🙂

“A few weeks ago, I went to the movies with my friends to see Extremely Loud and Incredibly Close. Everyone around me was bawling her eyes out, yet sitting there watching this heartbreaking movie, I could not shed a single tear. I, too, felt sad…I wanted to cry…but regardless of how my heart ached and my thoughts raced for the little boy, my face remained dry and stoic.
Too many times when things were crazy at my house and the tears would fall down my cheeks, my mom would scoff and say, “I’ll give you something to cry about,” or push me aside with a, “Why are YOU crying, you little bitch? I’M the victim!” I grew up afraid to cry. And not only was I fearful, but resentful. I was angry at the woman screaming in my face- I didn’t want to give her the satisfaction of seeing me break down. I didn’t wanna let her win. I didn’t wanna show weakness. I would do everything I could to act like her actions didn’t bother me. But too many “it doesn’t hurt”s, and “it’s all good”s can really affect a person…

This may sound a little crazy, but one of my most treasured memories is the night I ran away, one of God’s angels (let’s call her R) and I were having a heart-to-heart on the bench in her meditation circle. I had just hung up with my dad…who was yelling and crying and who basically told me life as I know it was about to be over. And of all of the beautiful, wonderful, comforting, inspirational things R said to me that weekend, one that sticks out most in my mind was when she put her hand on my knee that cold night on the bench and said, “Please let yourself cry.”

Please let yourself cry? Please let yourself cry! It finally hit me. I am only human! I am allowed to have emotions…I am allowed to cry. And so I did. I sobbed and sobbed into her shoulder until it was so dark outside we couldn’t see a foot in front of us. And you know what? As broken as my heart was and as embarrassing as it was to have trails of mascara running down my splotchy face, it felt good. It felt really good.

Do you, too, have trouble allowing yourself to cry? Has “crying is weakness” been drilled into your head one time too many? Well, guess what…whoever told you that was wrong. Crying is a sign of humanity, and regardless of what you are told or how you are treated, you have a right to express your feelings just as any other human would. Honest tears cleanse your heart and soul and relieve tension. And crying is certainly not a sign of weakness. Someone really special to me once explained it like this: Nature gave us two ways of showing our emotions, laughter and crying. Crying is not a sign of weakness just as laughter is not a sign of strength.

So, grab the tissue box and let yourself break down once and while…you’re allowed… ❤

With Love,
xLiveOutLoudx”

(February 2012)

“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?

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!

Relistor

Today I injected myself with Relistor for the first time!  Woo!

Relistor is a medication that reverses the effects of narcotic medication on the digestive tract.  For me, it was prescribed sort of off-label; my motility issues began way before I took any kind of medication.  However, I have pretty much run out of options.  I have tried almost every constipation remedy out there- Eastern, Western and everywhere in between- with very little to no success.  Doctors were beginning to talk about an ileostomy or even a colectomy (yikes!), but the doc with Palliative Care had the idea to try this first.  I am so glad he did!

Honestly?  I was pretty nervous to try it.  I don’t tend to react well to new medication…or, new stimulus at all, really.  Lol.

BUT GUESS WHAT.

Not only did I not experience a negative reaction, but… IT ACTUALLY WORKED!!!

I may or may not have cried from surprise and joy. :’)

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. 🙂