Updates...

Whoo!  We're back...still not fully recovered...but we're back safe and sound.  The Mayo Clinic was a challenging experience.  There were moments I thought things would never end, moments I wanted to give up and (just being honest) moments I wanted to give some doctors a piece of my mind. 

The testing was exhausting!  However, I now know that EVERY part of my body has been completely checked out.  The week got off to a rocky start but in the end the trip wrapped up pretty well.  My doctor finally even smiled on the last day!!!  (Trust me this was a huge deal)

After everything, my final diagnosis was chronic fatigue, some lower intestinal issues (made worse by my condition) and Dysautonomia.  My doctor would not label me with "POTS" because, as us Potsies know, we have good days and bad days and some of my symptoms did not present themselves during my autonomic testing.  My doctor said based on all of my other medical records...POTS...but from her testing (which is all she would look at) Dysautonomia.  She said the label wasn't important but then when I said well if you don't call it POTS then I have several symptoms that are unexplained she said "well then call it POTS." 

The bottom line is we have a tentative plan for now on how to deal with it.  She said that it could take me 6 to 12 months to recover from this episode but she thinks that we can work through it and be better prepared for not if but when I have these episodes again.  She things that I am in a cycle and that I most likely will get better again (like after my pregnancy) not completely asymptomatic but to a point where I can function better but that it will happen again.  After all, its a chronic illness.  We think it was the heat that triggered it this time and so that may mean that we start looking at relocating if I get better in the winter and become sick again this coming Spring.  Anyway you look at it, it is going to require even more lifestyle changes. 

The doctor thinks that a lot of the medicines I was on were causing my system more harm than good.  We found one instance where two of my meds were crossing and no one had noticed.  The put me on three new meds and pretty much took me off everything else.  She wants me to use my IV fluids as a crutch to get back on my feet so that I can start a physical rehabilitation regiment.  We are going to give it a couple of weeks of getting my GI tract "reset" in an effort to get me out of pain, but starting some meds.  Then increasing my fluids to give me strength and to alleviate some of the symptoms so that I can hopefully keep fluids and food down on my own.  If that doesn't get me up, we're looking at putting a port in since with a picc line I can't pick up Collin (nothing over 15 pounds) for prolonged fluids since my body seems to be rejecting medicine and fluids have proven to be the most beneficial thing to my particular condition.  Its baby steps...but hopefully I can get some quality of life back.  I want out of my WHEELCHAIR!!!  It was hard to hear the doctors talk about how deconditioned I was.  They acted like I wanted to be.  I would get so angry!  What 27 year old wants to be in a wheelchair???  I would much rather be chasing my son and dancing for that matter! 

The bottom line is we got some answers to questions that other doctors had been avoiding or ignoring all together.  I am very thankful for the opportunity to have gone...and hope I never have to do it again!  She gave me the name of a doctor she knows here in Dallas and we are going to look into him per her recommendation.  He used to work at the Mayo.  I am so thankful to everyone who has supported, prayed and just loved on me in this difficult season.  I thank God for everyone of you!