Monday, September 12, 2016

Update 9-12-16

Wrapped up and ready to go...
Today is an oddly emotional day... I am saying goodbye to me Iv pumps (fingers still crossed). I was really anxious about returning them... Until I realized they have no purpose without IVS to go through them. Lol I do not even have an Iv so, it makes no sense to keep them anymore. Even if I need them they can't help me without IVS. So as good as this is, it's a bit nerve wracking to loose IVS if you have Gastroparesis and POTS. I mean don't get me wrong home health can always send me IVS and a pump but it's still a funny feeling. On a brighter note I was on a lot more then 10grams of sodium per day while on IVS. And the goal is to get it through my J tube (sodium and all) I was on 24G of sodium per day. Now I'm on 10G. It's rough I'm so little so that does sound absurd. Honestly when I found out how much sodium I had been on, I panicked... I was like 24G??? That is so much more than 10G per day. Then I also paused and thought (wait? Why am I not having "side effects" of too much sodium) Well, it's because my autonomic malfunction is messing with my kidney functions. Basically our kidneys pull sodium back into the body so it can be used. (An essential electrolyte. We need sodium to live just a little knowledge) but my kidneys take my sodium and throw it away. My kidneys take my sodium and say, "we don't need this." And I pee it out. Instead my body should be using the sodium for many other functions. All POTS patients have this problem. It's why we need to replenish our sodium levels. However they have agreed that my kidneys really suck when it comes to this. They really like to throw away my important electrolytes and they in turn over produce urine... My kidneys can literally dehydrate me, wether I get enough fluids or not.) so anyways I need all that sodium along with a medication that helps the body essentially hold onto sodium...if I don't get enough sodium my blood volume will be low, (which will not help it circulate up to my brain) my blood pressure will be low, my heart will have to work harder and beat faster... And a lot more. So we have some room to work, but my GI tract has to be able to handle it too. My life is seriously a series of catch 22. (I think that is life when your automatic bodily functions break.) I feel like a zoo keeper because honestly that's my condition. That they don't even know much about... I have to try to control automatic functions in my body... That you have no control of... And the specialists get just as frusterated with us! It's purely frusterating! But the good news is I am safe with my sodium. Neuro even said he went over Lab work and I am fine, (we do labs to test hydration, which is sodium, potassium, magnesium levels.) So that made me feel better too! Even POTS patient who have full functioning GI tracts struggle to keep hydrated and to get so much stomach irritating sodium in... A lot of POTSies are in IV fluids due to this. (I think if our kidneys just would work, wow out disease would improve!) Up and down and all around #LifeWithPOTS ! But good news on the GI front I ate my first vegetable in years!
(Well minus the 5 baby steamed carrots that killed me over a few weeks ago)... Plan B. Purees veggies... (NVeggies, fruits, and meats are the hardest to digest. They also don't fit in the Gastroparesis low fat low fiber rule of thumb.) So we have to get creative! I also bought baby spoons... Weird I know! But if you are a quick eater... With GP you have to find ways to eat smaller bites to help aid in digestion (hence smaller bites). Since I am eating by moth lately... That's something I struggle with. So we try! That's all we can do! My feeding pump literally beeped all night (for no reason) it said I had no food left and uh, the bag was full? Seriously? So I faught with alarms all night long! So of course I got on the phone and said bring me another pump (this one was about to be thrown at the wall last night.)  That is basically my update just working on getting food in by mouth,keeping my j feeds up, getting my sodium lined out, trying to stay off IVS!  ...I have been sickly but we are thinking it could very well have to do with needing more sodium...because I have basically just been laying around. Which was not fair after having that long good spell! I will start physical therapy in November for my darn pelvis. I did have a good day Friday. I got ready for the day  and I went to the store (that's a good victory in my life) 
I stumbled upon these super cute flats...
And psh no I am not that tan... But some of us have to compress our legs... Thank you! Hey redheads! Don't you all wish our skin tone came in anything like pantyhose, or makeup! (Me too) (It's fall Y'all & I am weirdly into it this year) 🍁now I get to go see the vampires to take my blood to monitor all I just told up about! 😊 One day at a time-Chelle ... I didn't post yesterday, 9/11... I was not very old when the attacks happened... But I was watching some documentaries yesterday and I am always just so shocked at the amazing, brave people who were involved. I just wanted to say. Pause and be grateful for your loved ones. Pause and take a moment for the families and victims of 9/11. Keep them in your prayers too this week. https://m.youtube.com/watch?feature=share&v=gPHnadJ-0hE  Xo-Chelle