Monday, July 21, 2014

Just add it to my list of illnesses

God created something unique in each and every one of us.  We often wonder and asks ourselves, why am I here?  What is my legacy?  I know I have asked myself these very same questions especially dealing with so many illnesses.  We often dwell on our lack of hope to continue fighting because we are faced with it day in and day out.  What we have to remember is that we can never loose our reason for living.  I want you to remember something, something very important, God made you and you are worth everything!

I recently had a visit with a neurologist for a nerve and muscle test.  During our talk, he knew I had many rare diseases with on going symptoms.  He told me that he had a patient that would constantly call the doctors office to complain about her symptoms and demanded procedures to be done.  The doctor was calm with the patient, provided her with her needs and scheduled a procedure.  The doctor paused, looked up at me and said but someone like you who has multiple problems, never complains.  I then explained to the doctor, life is too short to be dwelling over every single issue.  Its how you choose to live your life makes a world of difference, not for anyone else but for yourself.

About a month ago I had a botox and balloon procedure on my pyloric to relax and stretch the area in hopes to reduce my pyloric spasms.  During the procedure my doctor found white spots throughout my esophagus and also discovered a hiatal hernia.  Thankfully, the biopsy results done on the white spots came back negative for infection and/or cancer.  However was diagnosed me with esophagitis which is inflammation that damages tissues of the esophagus.  Esophagitis symptoms are painful swallowing, chest pains and reflux.  Causes include stomach acids backing up into the esophagus.  My doctor informed me to double up on my Protonix and Carafate to help reduce my acid reflux and to help coat my esophagus to prevent further damage.   (See pictures below: First photo is my hiatal hernia and the second photo is the view white spots)

It has almost been 2 months after my pyloric procedure and I am extremely happy to say that every once in a while it will remind me the spasms are still haunting me but overall I am having no more spasms! Not to mention, all of my recent stool samples results came back normal.  When my pyloric spasms return, all I have to do is call or email them and they will schedule another botox and balloon procedure, no need to make an office visit.  How cool is that? 

Since my last post on my blog, I became very sick one night.  I didn't want to wake anyone up so I left out of the bedroom and into the hallway bathroom.  It was 1:00 am, woke up feeling extremely sick to my stomach.  I started vomiting, diarrhea, extreme dizziness, heart palpitations and was so tired because I still had ambien in my system.   I could have easily passed out, hit my head or gone into shock.  You see, that evening we went to a restaurant, had a hamburger and boy it was good.  6 hours later I am vomiting up undigested food.   Sorry for the TMI, but it was coming out of both ends at the same time.  I felt and am pretty sure I looked, pathetic.  My question to both my gastroenterologist and endocrinologist was, how do I know if I am going through an adrenal crisis when some symptoms of gastroparesis and adrenal crisis are the same.  My Gastroenterologist admitted she didn't know and thought I should ask my endocrinologist.  My Endocrinologist didn't seem to be worried.  She indicated that if I ever have diarrhea more than twice within a period of time to stress dose on my hydrocortisone.  I should take a triple or quadruple my steroid intake. She indicated with any episode of vomiting I should give myself or someone else give me, an injection of 100% cortisol and to just ask for a refill later.  Needless to say, I lucked out that night not going into shock.  I did not stress dose or give myself an injection.  You see, I am still learning about all my diseases.  Its really hard not knowing what disease is causing what symptom.  So I guess with that said, every time my IBS, gastroparesis or adrenals cause me vomiting, extensive diarrhea, dizziness, extreme abdominal paid, nausea, etc., I am just going to stress dose.  I would rather be safe than for my loved ones to arrange my funeral.

My recent blood results came in from my Endocrinologist.  She indicated my thyroid levels are almost level, made some adjustments but was more concerned about a new finding.  I am now hypokalemia, low potassium levels.  I am having to take these huge horse pills of Klor-Con 20 MEQ twice a day.  Since I already have a problem swallowing due to my thyroid flares and esophagitis, I have to break the pill in half.  Needless, this proves that no matter what I try to consume, between all my diseases, I am not getting the nutrients my body needs.  I feel as if my body is slowing starving itself and there is nothing I can do to help other than pray.