Today I feel like a whole new person! I feel full of life. Today was freeing after being so trapped in the house. I'm happy! I'm blessed!
Glory hallelujah! I was growing concerned. Though, I in fact knew I would be okay. When I fall I full fledge face plant. Life of the medically fragile. My POTS was very flared up to the point I was growing concerned. I even started thinking, "Okay what treatment can I start now? What study can I enroll into?" (There are some studies and treatments I follow that are new for Dysatuonomia.) It takes nothing to turn my life upside down. But yesterday I started turning around. We pray to stay on this good path. That said, I have a story...
Today I woke up and got dressed. I had labwork and appointments. I had to shove myself back into the world after 3 weeks. I haven't worn these shorts in a year. I almost took them off. I wasn't sure I still liked them. None the less I was sitting in the waiting room hours later. Something started stabbing my hip. So I reached in my pocket to find a feeding tube cap. It made me really think about how far I have made it this year. I had a backpack of formula hooked to a feeding tube the went into my small intestine fully avoiding the stomach. That's how I ate. I had IV fluids everyday. That's how I drank. This was because my feeds were too low to eat and drink and I was dehydrated or starving day to day. So they put me on daily IVS.
This photo popped up on my memories today... One year ago my feeding tube broke and fell out. It was a crazy time. (The actual story is pretty funny you'll have to go look back to last year and read it😉) I had spent weeks with my GI explaining something was wrong. I couldn't feed without becoming very ill. I was tasting all my medications that I shouldn't have been but it was going into my paralyzed stomach. I ended up having a hole in My feeding tube so it really was feeding into my stomach. Which was avoiding the whole point of my Jejunal feeding tube. My GI felt horrible about it, He had been very busy and didn't stop and listen to my issues. They all pointed to the issue at hand. Due to that I was not able to eat all that time. I then had to have a full surgery to recut my stoma and replace my feeding tube. I ended up getting refeeding syndrome. Meaning I had to start my feeding rate from scratch all over again. I could only feed maybe 10ml per hour at a time. I was malnourished. It took Me down the whole summer. I battled hard to have my nutrition. The second I regained enough to be in the safe zone, I caught some flu like virus. (In the middle of summer) my neurologist panicked with concern. I will never forget him calling me. I then got over that with a week to spare before going into surgery. (I went back and forth on actually going through with the surgery.) but I prayed and I was told "to prepare." I mean I had been praying for what, 9 years? For healing and one night I was told to "prepare. I would not be healed fully but I would function again." And just like that I slowly regained the ability to eat and drink. I was able to better control my diseases. It was definite divine intervention. God was in fact healing me. The world threw me nothing but ways to become sicker and my body was in fact healing. My mysterious disease was back tracking. My crew of doctors were all stumped but of course we were happy. We all held hope but were nervous to see if this was truly going to last. I had faith. I knew what I had been told. This feeding tube cap (literally garbage in my pocket)...Was a sign of where I have been and where I am going. It was not a coincidence and I know Heavenly Father has a plan for Me. I am a survivor. I almost starved to death but I did not. That cap didn't make it through the day and the laundry to be found a year later in my pocket on just the right day for no reason. There was a definite reason. Divine intervention. Don't throw your garbage away! Just Kidding! but always pay attention to the little things You may stumble upon during your day. Someone might be trying to tell You something. Please never give up on yourself! Here is to a new year of mysteries! -Chelle
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