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}

Merry Christmas Guys!!

I hope you all had a wonderful Christmas! I wasn't feeling good most of the time, but I got to listen to a Christmas Eve teaching online from my church, pray, open presents with Hannah over skype:

And make cookies with my dad. (I got to taste a little frosting at least, lol)

Also I was really hoping for snow, since we haven't gotten much yet this year.

I got my wish! I even bundled up and went outside on the deck which was covered in snow for about 3 minutes. (Btw Hannah, your scarf looks wonderful with my coat! lol) I felt sick for hours afterwords, and kind of worn down the rest of the day, but it was worth it. Sometimes just for the sake of my sanity I need to go outside, even if its just for a few minutes, regardless of whether it makes me sick or not.
Isaiah 9:6 

For unto us a Child is born,
Unto us a Son is given;
And the government will be upon His shoulder.
And His name will be called
Wonderful, Counselor, Mighty God,
Everlasting Father, Prince of Peace.
 (NKJV) 

-Merry Christmas! 
-Logan 

Happy Christmas!

Hey lovelies! Merry, Merry Christmas! I have not been feeling well but my Christmas Eve has been lovely, and to our Aussie bloggers, I hope you guys enjoyed your Christmas! I got to see some of my extended family and that was amazing.

Otherwise I am hanging in there.  I wish I had more to post on :).  I wanted to post a picture but I'm having difficulty doing that from my ipad but it snowed on Christmas Eve, how amazing! White Christmas, Whohoo!

There were no questions but Cheyanne, I am glad you will get to walk around for your birthday, how amazing! I hope things improve with your GI issues and doctor situation!

Logan, keep hanging in there girl, I hope you really enjoy your Christmas and start feeling better <3 nbsp="nbsp" p="p">
To everyone, have a lovely day tomorrow!
~Hannah

December 19, 2012

Sorry I haven't posted the last couple of weeks, the last two Tuesdays have been busy, and by the end of the day I was just sick and exhausted. I'm not feeling very good right now either thanks to an unusually long period, so I'll keep this short.
My sensitivity to touch has been really bad on and off the last couple of weeks. I'm even resorting to wearing socks (which I hate) all the time just so that I can't feel the carpet under my feet. I can't stand the feeling of the carpet, or the towels, most of the blankets, my dad's sweatshirts, the reclining chair in the living room, or the hideous scratchy pillows that came with the couches. Half of the things in the house I can't touch, and its driving me insane!
My G-tube is still doing fine, although there is a lot of overgrowth of granulation tissue. We have an appt for later this week, hopefully my GI doctor can take care of it then. We need to make an appointment with my primary doctor too, because I got my period 2 weeks ago and it hasn't stopped yet.
I miss you guys. Hope to see some of you posting again. 

Logan

It's Cheyanne!

I am FINALLY posting. I kind of took a little break being that nobody else is really posting. I have been doing okay, I guess. Last week was beyond stressful with finals and such. My grades came in today and I got an A in my first college class! Yay!! My dysautonomia symptoms have been rather calm, except for a horrible episode I had a few nights ago. All of a sudden my blood pressure shot up along with my pulse. The highest I caught it was was 170. If it got any higher, my mom said I needed to go to the ER for fluids and tests. I felt like I was going to die to be completely honest. Hahaha! I had not had a bad episode since being on my heart medication.

My GI issues are still present. The last GI doctor I saw was a complete joke. At the beginning of the appointment he was telling me that I need a therapist and that I did not have gastroparesis and that had an eating disorder.  The funny thing is that his facility diagnosed me originally. Weird. Towards the end I needed an NJ tube! Lets just say that I never went back to see him. I don't know what changed his mind. I saw my PCP for an opinion on the NJ. Some labs were ran and they were all fine with the exception of my iron (it's always bad). That is only by the grace of God because I hardly eat anything. When I do, it usually isn't very nutritious. Anyways, I am losing more weight now so we scheduled an appointment with my GI doctor closer to home. I am wanting her to do a smart pill test. I have heard it is more accurate than the gastric emptying scan when diagnosing gastroparesis. I am kind of excited to see her because it has been awhile. On the other hand, I don't want to go.

Since the last time I posted I have gotten knee braces! They help tremendously. :) I am so happy. My birthday is coming up and I can actually do something that involved lots of walking. The orthopedist said that I am hyperextending my knees and aggravating all of the tendons in that area. He ordered the braces to help with that. I am also in the process of getting fitted for ring splints. The joints in my fingers are not wanting to stay in place.

Logan: I am happy to read that you are liking your tube and that the surgery did not worsen any other symptoms!

Hannah: How is the school going? Learning Hebrew sounds amazing! I wish you could teach me to crochet. :) It seems like fun to do when feeling ill. I am terrible when it comes to crafty things. How do you manage Christmas shopping with your Dys? My dysautonomia usually doesn't affect me all that much (except for fatigue) when shopping (most of the time lol). I make sure I am prepared with fluids and compression hose because heart problems always tend to come out of the blue for me. Joint pain and other EDS stuff is the big thing for me that makes shopping hard.