Sunday, March 25, 2018

There goes that girl with the braces and chair. Hurry! Before she notices us! Feeding tube hooplah!

I'll start by saying that the title has almost nothing to do with this post (haha FOOl you)!
So today, I have to work myself up to finishing or near finishing one of my art projects. This week was filled to the rim with Doctor's Appts which includes a referral to Mayo Clinic. I've never been but my #1 worry is that what if I go all the way out there, and they don't know anything more than what we know in the ways of treatment? BUT what if they do know more? Then what will my life be like? What if I get back to some kind of baseline normal? I don't think I'd know what to do aside being exceedingly grateful. So far we've raised about $2300.00 which is amazing! It took the really hard work of my aunt Candace who is selling jewelry like a mad woman, all over the place and handing out cards and sharing my story. It's amazing and it's so wonderful to get to know her. Our family is a bit, segmented you could say. This experience, I feel, has brought us all closer and I'm even more thankful for that. My uncle Steve helped out greatly as well. It's amazing! I've started to hear from first cousins I've never had the chance to meet before. It's like the dream I've always wanted. More than anything, to have a closer family. Maybe this experience will spark regular contact with these people who share my lineage. I certainly hope so!
So what's with me? Well we are waiting on feeding tube supplies for which I will start overnight feeds. So what does that mean exactly? They take a small flexible tube called an NG tube, or a Nasal-Gastric tube. They feed it in through the nasal cavity (that's going to be uncomfortable), and it goes down into your stomach to essentially 'trick' your body into getting the nutrients. Without smell or taste, this may cancel out some of the nausea and lead to maintaining some of those calories going in. The feed is Ensure which, little did I know, can go through insurance under the right circumstances i.e. slowly starving to death.
What does this mean for work? Well, since it's just over night, the most people will see is the NG tube sticking out of my face. I read this post of a young woman who decorated the outside of hers with jem stones and I have to say, that looked pretty snazzy. Like what Lady Gaga would do if she had a feeding tube.
How's therapy? Going well I think, though she gave me a ton to think about. Listening more, responding less at first feeling, and looking at myself in more of a positive way.
It's been hard not to feel like a failure of sorts as a person. I can't contribute the way I would like, so I feel that I'm failing at that. And at being a mom. And at being a wife. And at being a friend. She's helping me to sift through the lies of what I consider truths. I'm hoping one day all of those thoughts snap into place and I remember that I didn't ask for this either and I'm doing the best I can with what I have. Sometimes I feel like this part is more difficult, than trying to fix the health issues. I know once I can walk again, I will feel more like an actual person and less like a blob sitting in a chair or bed binge watching America's Next Top Model (don't judge me!).
I'm at work currently, and happy to be out of the house. My husband has a cold so don't want any of that. Pretty quiet here, but at least the sun is shining through the windows (even if they don't open).

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