Monday, October 19, 2015

cold intolerance

It is finally cold where I live now. I am dealing with once again not being able to regulate my tempature. Now it's shivering to death for hours at a time. I have been sick today. But I am learning wearing a beanie when shivering and it just isn't getting better tends to really help me! Well wishes!-Chelle 

Saturday, October 17, 2015

fill in

Yes I had a good day this week! Go me!! I drove my beloved Herbie, left the house, put makeup on, did my hair, and went to the store (gasp) it's such a pain being so weak and I'll. the tasks that seem so simple are far from to my body.... But I am learning to have a much higher appreciation for simplicity! 
On anther update concerning the past week, I am having a problem. I can't quit eating by mouth I am starving. I can throw up and literally just think about eating. I vent out what I eat by mouth mostly through my g tube in my tummy that's the big tube connected to the ziplock (yes it's gross) then I feed through the other tube my formula ... That's called the j tube. I am sick of feeling like I am starving and no matter how sick, the price I pay for eating, my fake but very real starvation is out of control. That's what is going on much love to you! xo-Chelle

Saturday, October 10, 2015

Back at it

I am happily back home currently feeding through my working j tube. Yay! The endoscopy went good. I had scary low blood sugar levels when I arrived to the hospy. Luckily I have my glucose meter to test my blood sugar levels. I ended up on the hospy floor ew gross! This geemaphobe did not even care. They ended up pushing glucose through my Iv we didn't use my port.                             I am feeling better slowly but oh so worn out! My brain as weird as this sounds feels stronger today. I plan on more resting today. Oh and looking through the internet staring at pediatric wheel chairs. I can walk and all. But when I am out for a long time I get sick from my postural Orthostatic tachy syndrome a.k.a POTS. So instead of locking myself up in my bed I am looking at this as a tool to help me get out and about like I used to do. Now will I use this daily or everytime I leave my house? No way, I have two good legs that u will use I just need help when they get floppy lol ... It's stressful trying to find a wheel chair and what you want I. One. Wish me luck because I am back at it again! Not giving up on this #dysautonomia fight! This photo was right after surgery a little puffy swollen.-Chelle

Tuesday, October 6, 2015


September has just been survival mode for me. My j feeding tube recoiled back into my stomach within days of fixing and it's been a fight to say the least to get help. I will be getting a new feeding tube Thursday. I have lost 15lbs this past month and I feel like crap. I am a fighter. This my Heavenly Father had made clear to me this month. Sometimes I wonder if I got myself in over my head in the pre existing... Oh but what glorious blessings lay ahead one day. Conference was a joy as usual and a great comfort to me. October is Dysautonomia awareness month. Go turquoise!!! For all the fighters who fight alongside me, we got this to learn more about Dysautonomia and how you can help: