I believe trials are the biggest blessings in life! being sick has been my biggest trial yet. Being a young LDS woman I view my life as a beautiful gift. even when it doesn't seem that way my father in heaven helps me to have strength to endure all hardships of being ill. I hope to help others by sharing my day to day experiences. I'm just a small girl ready to make a difference. During the good times & while enduring the bad times we can live, encourage, & most importantly LOVE!
Monday, March 28, 2016
I'm back home
Tonight I realized how this blog has always been my service project to others. However in reality it's ended up being such a blessing to me and my life. You know the saying"you don't know what you've got til it's gone." That's exactly my realization tonight. I lost this blog a huge blessing in my life a few months ago... I just didn't know what to write anymore. I was dealing with hard times and harsh realities. I still struggle with them. I am chronically ill in many ways, shapes, and forms. This past year or so my house has turned into a mini. Hospital. I earned iv therapy, months of TPN via picc line. To losing my picc line from a four inch blood clot. (All while trying g to find a gi to take my case and place a gastronomy jejunal tube I desperately needed. Then I had nasal jejunal feeding tubes 3 in a months time. When I did finally find a specialist to take my case and give me a gj tube... I had issues (typical) lost a few tubes and had replacements. (And that's just my gi standpoint. I am also fighting POTS or Dysautonomia. My heart rate goes high upon standing I mean for a whole year my heart rate was 160 . I had to make a major diet change to get 10,000mg of sodium per day! (A few months after another huge diet change when my motility slowed ) medication s have came in loads and I now crush mix, syringe them into my small intestine. I have to salt load upon feeling like a rag doll and passing out, sometimes I'm dizzy laying down, I have absolutely no energy, my pain is high, my migraines chronic, I have tremors, I loose feeling in hands and drop things, I have brain fog, I loose feeling in my hands randomly and drop things (this literally just happened!
my body doesn't do anything automatically right anymore and it doesn't test for things wrong. It simply like to malfunction. I now have small fiver neuropathy. I also have other diseases two autoimmune; Sjögren's syndrome and lichen planus.i have endometriosis. Asthma, bpd, hypothyroidism, gastroparesis, elhers danlos syndrome. I received an iv pole for all these things feeding pumps and ivs. I get boxes of formula and bags monthly,
(If you are wondering about all the little cokes they are used to clean my feeding tubes)
I now have a port that goes into my heart for iv fluids.
. I have learned how to do my own port care 100 percent! That's a whole other shelf of sterile supplies.
Compression stockings daily to help keep my blood to my brain. Oximeters and blood pressure cuffs to check my Orthostatic intolerance. A glucose meter because some times I get very rapidly dropping glucose levels. The latest add on is the wheel chair but I love it already! As my hospital groows the house shrinks lol (but did you just see me list the past year of changes, let's face it to be honest we are dipping toes in the water. I have been through trauma this year and other times as well (other stories,other days) I just got overwhelmed, my life had changed so fast last year I think I just needed time to process it all. And there is nothing wrong with that. I prayed and prayed but my heart couldn't do it. I could not blog daily. There was too much I couldn't say because I couldn't say them to myself. Healing takes time. I think my Heavenly Father knew that. He knew what I needed and I took a break. Being back into my blog, I get to share my stories, make new friends, support others, focus on what the Lord wants me to do. I am studying scriptures more, praying more often. I tell him constantly "I am your tool use me"but throughout these days of blogging my heart is more full, I know I am home again serving the Lord. In my own special way-Chelle