Saturday, June 6, 2015

pretty lights & medical updates

Really enjoying my new lights. I love candlelight. I find it relaxing but since I have these seizure tendencies the flickering is pretty much a trigger. So now I get the similar lighting without feeling dizzy,swallowing my tongue, tremors, confused, and a throbbing headache. It is pretty awesome and cute!

I realize I have not been talking so much about what is going on with my health. So I will start with...as I type this my feeding tube clamp is stabbing me. As it always does when I lay on my tummy. My stoma has been sore and bothersome but my feeds are at 55Ml an hour!! The highest level ever! Wahoo! I am blessed with this tube to sustain me life:) 
Some of my medical issues are improving most are waning. It's all unpredictable. My tummy is bothering me today. Digestion is slow, which means for me nausea,pain,bloated, and a wasted trip to the grocery store.... I rocked the I'm sick and tired because I have dysautonomia look


I thought I was getting enough fluids of all Pedialyte through my j tube and I read the bottles wrong...I am getting at most a liter a day and I need at least two a day. The salt tabs I stuff into my formula and Pedialyte. However it's making sores in my small intestine I think and I know it's creating a ton of acid. But in warm weather I start being seizure like and dizzy, then my head pounds every time I get up... and then some...I keep using the term "seizure like" because we haven't caught them yet. I had an 48 hour eeg but haven't heard back yet. (My neurologist has been on medical leave) I see him in two weeks. Yay.! My endometriosis I suspect is not doing well. Hence my horrible periods. I recently tried birth control pills to treat this... or horror mones I call them but within days I was just more miserable. I was on those pills for most of my teen years and they never helped. I had 2surgeries to remove my endometriosis and might be having my third in the nearer future. Oh and the roof of my mouth is swollen and covered in sores a.ka. Lichen Planus. I'm going to be better about updates concerning my health_Chelle