:)

Hey lovelies, I hope we can really re-vamp this blog. I'm sorry to you guys and the readers that I've been so horrible at posting. By the way, this is Hannah and I'm going back to Fridays again :).

There is not a whole lot happening with me at this moment in time, other than the ups and downs as you guys know how that goes. Right now I'm trying to set small goals for myself to complete bit by bit. I started to have a bit of a "pity party" today about not being to a place where I could work or attend college, but I started to come back out of it :). There is so much value in this time, the here and now. Sometimes the time feels wasted, but when you're living in light of eternity, times like this really aren't wasted (though, don't get me wrong, it's definitely possible to waste time!).

It snowed here today and I went out to play in it :) I was going to try to post a video but I'm having problems uploading it right now to youtube, but if you wanna see it, I'm going to try to post it to my youtube and blog (youtube: hannahsdysautonomic. blog: livingwithdysautonomia.blogspot.com) soon!

I hope to push myself to really enjoy the little things in life. I was doing well at that for a while, and I want to get back to that. Not measuring a day by how much I can do, but enjoying what I can do, even if it's very little. That is something so beneficial and beautiful to feel :).

Logan, I hope you can find a formula that really works for you! You've come so far with pushing and fighting to get your GI under control, keep at it!

question: What is your favorite thing about winter? The snow? Bundling up? Sitting by fireplaces?  Lol.

I think one of my favorite things is bundling up. At least the beginning of the cold weather I love it. It's so comfy and cozy. Plus, the snow is gorgeous and when I can I love being in it :).

Alright ladies, I hope you guys are well!!!
~Hannah

P.S. Ladies, please don't hesitate if you notice I'm missing posting to say something, because it's likely due to my forgetfulness!

Your Lovingkindness Is Better Than Life

I have to admit... I was feeling pretty annoyed with myself, because I skipped posting for a couple of weeks. But then I checked the blog yesterday and realized that no one else has posted either. I apologize to our readers (if we have any lol). I will try to keep posting weekly, even if our other bloggers don't post much. (Mostly  because I'm stubborn, and bored out of my brain.) But never fear! You will always have my boring (and sometimes completely off topic) ramblings to read. 

The last couple of weeks have still been really tough. I have to be careful everyday how I spend my spoons, because I don't have very many. No matter how careful I try to be I'm usually sick and exhausted by mid/late afternoon and very sick in the evenings.  I've been in such a nasty mood lately too, I get mad at myself, other things, and other people so easily. Which reminds me.. lol. I had an upper endoscopy and my PEG tube changed to a Mic-Key button Monday morning. The nurse took my weight and height, but she hit me in the head with the measuring rod thingy. I glared at her cuz I was so tired and cranky, and then I felt bad afterwords. I know it was an accident, and she was a fabulous nurse the whole time I was there... a little oblivious to the amount of noise she made... but otherwise she was a sweetheart and completely made my day.
Anyway, I'm absolutely loving the Mic-Key button. Its much smaller, more convenient, more comfortable, and doesn't look nearly as freaky as the PEG tube. Also its easier to clean around the stoma... and taking a shower/bath or changing my clothes is no longer a freaking pain in the butt, I can just disconnect the extension so there isn't a tube dangling around in the way.

My stomach is being pretty fussy though. I didn't tolerate the last 2 formulas (Compleat and Jevity) so I'm using the Pediasure Peptide at the moment. Since the Pediasure Peptide has protein in peptide form (obviously lol) instead of intact protein that might be a clue. I can't seem tolerate anything like a protein/nutrition shake at the moment, no matter how slowly I drink it, and the higher the protein content the more it seems to bother me. I really don't want to stay on the Pediasure Peptide though. It may agree with my stomach, but I feel awful otherwise. I'm exhausted, run down, and more sick and irritable than usual.. (as most people would be if forced to live solely on milk shakes or any other form of “junk food.”).

There are some elemental formulas that are unflavored, simple, and free of some of the “junk” that Pediasure and similar formulas have, and the protein is in amino acid form which should help a ton assuming that's what I'm having issues with. My doctor is sending me a weeks worth of Vivonex RTF I think to try. In the meantime I'm trying to be very careful about what I have by mouth, (even what I drink when I take my meds) because it doesn't take much to upset my stomach and then its even harder to run my feeds.

Oh, when I was at the hospital on Monday morning, the nurse gave me a blanket. There was a logo tag sewn on it that said “Project Linus.” http://projectlinus.org/ This is their website, if any of you guys sew, knit, or crochet you should check it out. They accept all kinds of handmade blankets, and they also have free blanket patterns on their website. Blankets just need to be handmade, brand new, and washable. (Child appropriate colors are best.) They also accept donations of blanket making materials like yarn, or quilting supplies.

Ttyl

Logan

 O God, You are my God;
Early will I seek You;
My soul thirsts for You;
My flesh longs for You
In a dry and thirsty land
Where there is no water.  

So I have looked for You in the sanctuary,
To see Your power and Your glory.

 Because Your lovingkindness is better than life,
My lips shall praise You. 

 Thus I will bless You while I live;
I will lift up my hands in Your name. 

 My soul shall be satisfied as with marrow and fatness,
And my mouth shall praise You with joyful lips.

  When I remember You on my bed,
I meditate on You in the night watches. 
 Because You have been my help,
Therefore in the shadow of Your wings I will rejoice. 
 My soul follows close behind You;
Your right hand upholds me

^{-Psalm 63:1-8 nkjv}