Friday, August 19, 2016

Port Hope???8-19-16

Travel pictures: 
Me... Ready to conquer this day!! And my upcoming appointment like a boss! 
Travels...
More travels...
More...
More...
Haha isn't this so cute (sarcasm) don't worry I just wore them in the car! Taking care of POTS! #Compressions 
At 11:11A.M. We made a wish! (No I didn't wish for myself or treatments) 
Today has been long and a whirlwind but positively one of the best days of my life!

My j feeds are so high my neurologist agreed to take me off Iv fluids and use this j feeding tube!! All my kidney stuff from the rheumatologist yesterday was all GOOD things! (Those jerks made it seem like something was really wrong with my kidneys) but the low BUN and CREATIN are just good signs that I am well hydrated! You prefer them low! It means you're doing well! My high sodium is too a good sign of hydration (and a good sign for POTS as long and my blood pressure stays not high) we will continue with treatments of potassium and sodium and fluid via j tube and Iv for a few days or as long as it takes to ween my body down to 1 liter fluids per day (all while upping kidney medications to make those kidneys do their jobs better) my Neuro was highly pleased and I pretty much cried happy tears and was on cloud nine
(no more needle in my chest every day!!!) we will leave the port a cath in.  A...It's Dysautonomia and can change in the blink of an eye good or bad... I may need IVS in the future and B. I have so many ER visits, tests, gj tube changes, Ect. I need that port for all of those "sticks" plus as long as it's not accessed ... it is not an infection risk and no biggie to have! I can't describe the gratitude in my heart for my doctors that allow me to fight and follow my heart, instincts, and put up with me and my plans I always walk in the door with! He told me to, "keep up my amazing attitude that I am going about this the right way" enjoying the good times but realizing they can always go back or worse ... We never really know... But it's good We ALL ENJOYED the appointment (even my neuro was just so happy!)  we will stop the magnesium...
since its for migraines and will see what happens... Since they have improved! When or if they come back we will deal with that issue then (magnesium wasn't like some magic cure anyways it just simply helps them) I will continue my riboflavin, B12, and potassium for migraines and they seem to help my neuro situation anyways! I couldn't be happier and even if it changes tomorrow... I will always be grateful for the happiness I have felt these past few days! I have enjoyed my good days! I am so beyond blessed and I will NEVER quit fighting! Never give up on yourself! Even if the world does... "You are brighter than the stars believe me when I say, It's not about your scars it's all about your heart"(Mindy Gledhill) - Chelle (oh and of course when you go to #Costco) 
you must get more sublingual (dissolvable) B12 and
liquid* CoQ10 to push through your Tubie! (I basically just hang out in the vitamin/medication isle (I'm that cool) 😉 OH! by the way... YES my nails are painted #GreenforGP #Gastroparesis #awarenesmonth #GOGREENFORGP #StarvingForACure (when I post about Gastroparesis awareness and hashtag #GoGreenForGP (Ect) it makes me feel like when I was in high school (Cheering) hahah our school colors where green & gold #GoCougars! 😂👏🏅📢💚 #relivingThose #HighSchoolGloryDays