Monthly Archives: July 2016

Company :)

Company while I poo πŸ™‚ (And it’s taking awhile…dang s*** is stuck 😦 But I’m not alone– Don’t you wish we could just inside those little minds and figure out what they were thinking about it? Do they think in … Continue reading

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Lots of cool bracelets too

I got lots of cool bracelets too–it’s like the Madonna look sick patient style πŸ™‚

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Writing medical history down!

It’s good to have your medical history on a piece of paper! Conversation happening between a patient and a nurse in the bed next to me in the pre-Op area: Nurse: did you have breakfast this morning? Patient: No Nurse: … Continue reading

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Damn friggen port-a-cath

I need my port in my chest so so SO bad (otherwise I wouldn’t be able to get anything into my body because my veins are awful), but my port clots up so much…this is my *5th* port in my … Continue reading

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Instructions on my death

Please save my genetics for my son, for future genetic studies. Please bury me in Hollywood forever cemetery, Tara Leigh MacKay Kittle, with ‘we can help the people who cross our paths’ on the tombstone. I am extremely grateful to … Continue reading

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Conversation with David Noah about his GoFundMe page tonight

Noah said the wisest thing to me tonight, it almost made me cry…I was sort of apologizing for the gofundme page (he’s super private), and he said, quietly, “I understand why you did it Mommy…you’re just trying to get the … Continue reading

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Go Fund Me page

I don’t think anyone actually reads my blog, but in case so, please donate to my son, David Noah, go fund me page: https://www.gofundme.com/2g5tgyc?pc=expt_em_co_shareflow_m_89_2&rcid=2c02286651d711e6b286bc764e05b494

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Someone just like me

It’s such an overwhelming feeling to meet someone just like myself…but even more like me. More talented than I am, suffering more than I am, smarter than I am, and perhaps even with a disorder more rare than mine… (Though … Continue reading

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I just called Dr. Hanson at the N.I.H.

I basically left on his vm, “I know I’ve been a bad girl, I was with my father in Canada while he was dying of cancer, getting whatever last minute family history I could get out of him, but now … Continue reading

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God, are you listening?

I’m not sure exactly what I’m asking for or hoping for, but will you please find someone to help us solve this immune deficiency?? I’m fucking tired of feeling my life dependent on twenty different people just to make it … Continue reading

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