Life Keeps Going (ft. 23andMe Results)

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The last week has mostly been extremely uneventful. I have been slowly trying to increase my feeds daily so that I can get up to the rate of 82ml/hr for 24 hours, I started at 30ml and only 250ml of feed. I’m now at 24 hours, at a rate of 60ml/hr.

I spent most of the week doing school work and just resting while also trying to get a hold of doctors and schedule things. I had my labwork done which came back normal minus low potassium, which means no refeeding syndrome.

I got my 23andMe results, which showed that I am not a carrier for anything like cystic fibrosis, sickle cell, etc.

I did however test positive for a couple of things: Crohns (not shocking), Ehlers Danlos (COL5A2) which also didn’t surprise me, Mastocytosis (which I didn’t even know what it was until I it popped up on the test), and I actually had some genetic markers for Autism. Overall it was super interesting to see what I was at risk of, but also a giant relief to see the hundreds of things that I didn’t have or were at no risk of! Now to get the results to my doctors so they can do their thing!

On top of that I got to discover my genealogy which told me I was 51% Irish, 27% British, and 17% Scandinavian and then a bunch of smaller percentages of Northern European .

I’ve been working on trying to find a tape for my face that is both gentle and strong. I tried Avellyn Thin which was gentle but not sticky enough, a plastic transparent tape that was strong/sticky but caused my skin to get destroyed, now using NG Strips that I just cut up because I didn’t want them on the bridge of my nose cause I think that would drive me insane. Because it’s both sticky but sensitive. The problem is the hospital only gave me like 3 of them.

The funny part is my skin by my tape isn’t super irritated, but I’ve encountered something (most likely a new brand of makeup remover) that has caused a rash on my face with hives and burning sensation. I’ve been putting liquid Benadryl in my NJ to control the burning so I don’t itch at it and irritate it more.

Of course, Benadryl only works because it sends you into a stoned state where your pupils just dilate and you don’t care about anything except sleeping. Which would be fine if I hadn’t had to write a 5 page essay on Plato for English. I sent it to a friend to revise and look over because I can hardly focus on writing let alone making sure I typed everything right. Even now I find myself spacing out or feeling like I am rambling.

Tomorrow I have college again, which luckily I got a Tubie Clip from TickleMeTubies which has things for all sorts of tubes! I definitely recommend them to people. I am hoping this will make sure I don’t end up getting my tube in clay or glaze like last Monday.

This week I also booked a photo shoot with a couple who wants photos before her boyfriend leaves for the military. I also have another counseling appointment in which we have been working on learning social cues since she thinks the root of my anxiety and panic attacks come from just a misunderstanding, as well as working on healthy ways to calm down during a meltdown.

Over all, I think this week is going good so far. I’m hoping to get some crafting done as well since I have a LARP event coming up that I plan on entering in their art contest. If I have the time, that is, with finals and stuff also around the corner.

Overall, this week has been good so far minus a few small issues, and I really like to think things are gonna go up from here out. Even if they can’t be perfect, even if I can’t be cured, good days are good days. Mine may be different than others, but they’re good to me.

I hope this week is a good one for everyone else as well!

 

 

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6 thoughts on “Life Keeps Going (ft. 23andMe Results)

  1. I love your blog.. it has been teaching me things about Chron’s that I didn’t know. I really appreciate your honesty with getting down to the nitty and gritty of it without sugar coating it. That being said, I have a question regarding your NG tube: Why are you using the NG tube? Is it because you cannot eat or swallow liquids? Whats the difference between just swallowing liquids and using the NG tube? Pardon my ignorance please as I want to learn more. If this is too personal of a question, just let me know. Thanks, Grace! 🙂

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    1. I had an NG for almost a year for gut rest to help with inflammation. I have an NJ now which bypasses the stomach and goes into the jejunal and it’s because of Gastroparesis 🙂 I’m glad you enjoy my blog.

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  2. You are doing great, Grace. Try your using a skin prep before applying the tape on your skin. I have found it clears up and prevents irritaation. You will find it with the ostomy supplies at your pharmacy.

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