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Today

Today I am pretty transparent a.k.a. super pale. And puffy. Which shows my body is so angry still. I have become anxiety ridden since yesterday. This is not my normal at all so I hope it passes. Bottom line being sick can tear you apart. But you just need to keep pressing forward every day...

Yesterday

Yesterday at iv therapy there is the sweetest lady. She appears to be paralyzed from the waist down. She comes in for an iv the same time as I do every day. I need to catch her name. But she is so sweet and she tells me how amazing I am and it warms my heart because I look at her and her struggles and I think she is the amazing one! It's people like this dear lady that make being so ill okay in those moments.Still fighting-Chelle

m

okay,

Hallelujah today I finally made a turn for the better... my Neuro got me sleeping again, thank you medication. And more iv therapy. No more hpertinonic iv....those should only be used in hospital settings with lab work and monitoring. Or if sodium levels are low via lab work. I am bummed about how fast and hard I fell back down but know that I can get through it. Gosh when I said earlier this week,th that I was going to be better on medical updates. I didn't mean I needed to fly off the handle and crumble with this syndrome. Haha but in all seriousness...God is there, in blue skies or Gray... just pray! Xoxox-Chelle

Dejah Vu

Totally having dejah vu... spent along agonizing night in the e.r. and rotten treatment. Now I am at i iv therapy and just found out no more hyper tonic iv without a central line. Ugh losing-Chelle

New Neuro Plan

Yesterday my Neurologist and I had a nice phone conversation. (No sarcasm, it was truly a great conversation) my favorite part of my neurologist is that he talks and treats me like a person. No brick walls or sharp mannerisms, no lack of acknowledgement of my issues.  But long story short we came to the conclusion that I need a port for sodium and fluids. I am soon again to be a SUPER tubie. I have never had a port before. But I have really been feeling peace with things. I will continue to listen to my fight song -Chelle

dysautonomia

My POTS is not doing so well. I am struggled yesterday. I have spent the whole day in bed nonfunctional. I think.oh am lower in sodium but when I try to eat more through j tube I have pain. Now I am not tolerating feeds. Also having lots of abdominal pains..my hands are weak, numb, and it takes every thing to type. I am actually pretty miserable. Standing is a chore my heart was racing to the point of waking me up. Very nauseous and I spilt my pill box all over .
This is just a POTS day. I am not unhappy. Just working on being patient I've reached a new place in life that is giving me peace.in my heart.I have a drive here on earth. I guess now it is time to call the doctors and let them do their parts.-Chelle

Take Me to Church

I had a wonderful opportunity to attend sacrament meeting today. My heart is full and I am happy. I was running late (medical problems will do that to you) so I only have a picture of my super cute heels I wore and my post naptime photo haha. My favorite part of today is I said a quick prayer before I left and I jumped in the car... turned the key and thought "oh, if only my song was on." My song came on... fight song by Rachel platten.  My heart was beaming with the spirit. Those tender mercies are what keep me going forward! Xo-Chelle