Hey lovelies! I'm sorry I didn't read through the last posts :(.

This past week and the week before has been very challenging. My grandma passed away and my grandfather is in the hospital at the moment. So it's been one thing after another but nonetheless God is good :)

Trough this I'm learning new coping mechanisms to deal with stress because simply put, there's too much going on to continuously have on mind... And it can be hard not to think about things when you're sick at home, you've got plenty of time to think! But I've been throwing myself mentally into things whether its crocheting, sewing, drawing, or what have you. It's teaching me in a sense to push myself beyond my limits and be more productive in order to stay sane. Now here soon I might have a total crash blow out, but we'll see!

I think us dysautonomiacs should have a bit of a conference though to see what's happening with this blog. I myself am guilty of forgetfulness and neglectful ness at times, but I think we should really come up with a game plan :) when I can think to, I plan to try to get the ball rolling :)

I love you ladies and you readers, thanks so much for taking the time to read our musings.

This is such a short post I apologize, I have a lot on my brain at current.

Until next time....
-Hannah

Hidden Hearts Alliance

Check out this website guys, its awesome! 


http://www.hiddenheartsalliance.org/

"Mik's Hidden Hearts Alliance mission is to offer hope through empowerment and community awareness to both hospitalized and homebound teens and their families who suffer from Dysautonomia and other life-changing hidden chronic illnesses."  

- Hope you all are doing ok. Jesus loves you!
Logan.

Book Addict

I'll keep this short since I'm really not feeling good today. I really only have a few good "usable" hours early in the day where I'm up to doing chores, going to a doctor's appointment, ect. I usually get up in the morning sometime between 10 am and noon (due to being up all night with insomnia), and then I'm sick by mid or late afternoon. After that I'm pretty much useless lol. Sometimes I just wake up feeling sick too, on those days I don't even get a few good hours in the morning. 
In spite of that I'm trying really hard to get my room(s) cleaned up and organized. (And keep them that way.) And I want to start a new online course for school too called "Study Skills." I should be able to take it as an elective, and based on the course description I'm hoping it might help me find some ways to better manage my memory problems. Or at least get through school work faster maybe.
On the same note, I've had several Dysautonomia friends recommend doing "mental exercise" everyday to help brain fog and memory problems, like reading, schoolwork, playing computer games, doing crossword puzzles, whatever. I've just been trying reading alot the last few months, and when I do it daily I do notice that in general my thoughts aren't quite as sluggish! I haven't seen any overall improvement in my memory, or in my brain fog itself, but I think that on top of those issues.. over the last few years my mind has kind of atrophied a little bit from being homebound all the time. Like when I got sick I stopped going to school, I stopped reading all the time. I stopped playing flute and only I toyed with other instruments. I couldn't really be social or interact with people much. And then there are all the little things like not doing art or sports, not listening to music too much, or being able to even look at something that's too colorful or complicated, because of sound, light, and visual sensitivities. Do you guys get it? My memory problems and brain fog started happening right away when I got sick, but over the last few years I think my mind has also atrophied a little just from being homebound and isolated from all the stimulus and "exercise" it used to get every day. 
I think I'm just going to stick with reading for now and see how it goes.

Hannah: my favorite part of winter is probably the snow, it can be so beautiful! 
-Logan

 John 16:33
 These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.”

:)

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}