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…

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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 🙂

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?

Where Was I?

Sometimes I look into the mirror and at the person staring back at me like…what happened?  When did I become an adult?  Where did that little girl go?  Wasn’t it just yesterday that she was playing outside, dancing in her bedroom- dreaming of the independence of the grown-up world?  Where was I all those years?  I would have protected her.  I would have told her that being a grown up is not all it’s cracked up to be.  I would have begged her to stay young.  I would have shielded her from every little thing that stole away her blissful innocence. Those eyes in the mirror have lost their light.  Even when she smiles, she looks so worn.  Battered.  She stares back at me, brows furrowed, as if to say, “Why didn’t you save me?”  I slowly reach out to her, and our hands meet.  A tear slides down her face.  I want to tell her not to cry…that it will all be okay…but my breath is caught in my throat.  Looking into her eyes I whisper, “I’m sorry.”  And then I turn away.  

To The Doctors Of Chronic Illness Patients

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!

Read more: http://themighty.com/2015/11/to-the-doctors-of-chronic-illness-patients/#ixzz3qYSgQutb

A Letter From A Doctor To Those With Chronic Diseases

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.

Read more: http://www.degosdisease.com/patients/stories/letter-doctor-those-chronic-diseases-read-it-its-so-valuable

I truly appreciate this doctor’s honesty.  See next how my spoonie sister Catherine Richardson responds!

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. 🙂

Out Of Surgery!

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Officially a tubie!  Started feeds a couple hours ago.  Hard to describe what I’m feeling right now…this is certainly a transition.  Surgery itself went well, but we have run into quite a few complications post-op.  Will try to update later when I am not so sick.