My Rock

Gods love for us is divine and individual. He knows when we need his comfort. All we have to do is ask and pay attention. Tonight I asked for him to give me a sign that he is there and I am okay. (Which I am) but you know when you are a kid and you need the monsters on the closet checked out before going to sleep... Well I just needed my loving Heavenly Father to comfort me and chase my monsters out of my closet before bed tonight. I just needed that trusting care and love that makes you know you are okay at the end of the day...this song http://youtu.be/oJVv5kjOJhU as playing and I suddenly felt the need to listen to the lyrics. I think the message is clear. Heavenly Father is my rock. The one thing I can count on no matter what. What a comfort that is. I love him so much!!-Chelle 

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 

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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

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

September

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: http://www.fundcourage.org/

Times Get Tough

I have been pretty ill. My feeding tube, the j one... was coiled inside my stomach and my feeds were backing up into the stomach. Leaving me very ill and it got to where I was getting no nutrition. I was hospitalized this past weekend for my gastroparesis flare (to try managing the beast) I also had an endoscopy to check my tummy out and fix the tube. I will have another x Ray in a few days. If any signs of movement, I will be getting a new tube. My blood sugar dangerous dropped the first morning I was in the hospital. (I was so blessed to be there in good care, with an on top of it all nurse... so we caught the scary low blood sugar. I can't imagine what could have happened if I was at home) It is clear to me how our life's at times seem well unsatisfactory. Like those "hello God can you hear me?". He can. He picks up the pieces along each broken road.I am still recovering at home. My feeds are pretty low and it's going to take time to get back on my feet. I can honestly say I know what it feels like to starve. Something I never thought could happen to someone like me. I have cried many tears over it this past year. It's not for the faint of heart. The hard part is all the foods right in front of my fingertips. So I know all the different ways we see to donate food. Put a can of food here, donate food there ... especially around the holidays. But please do. Somebody,somewhere really is hungry and needs that food. If you are that somebody somewhere, I am praying for you! I know I will be doing my part from now on. I have been through so much this past month and I can say quitting is mostly what I have wanted to do...But I am not done writing my story yet. It's turning fall here, my favorite time of year! Yours truly-Chelle.

Not doing well

Not doing well I could use as many prayers as possible. My gastroparesis I think is what's wrong but I have been sick two weeks today and getting worse and no nutrition.-Chelle