Wednesday, January 16, 2013

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.” 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.



 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

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