Sunday, January 15, 2017

Milestones through the looking glass

Today is a BIG day!
I finally have decided to be brave enough to box up my port supplies. I have not been on daily ivs for many months now but it's just been a little too nerve racking to box it all up. (And I haven't been able to take the time to conplete the task of boxing up port/ IV supplies (along with that task comes completely reorganizing all medical supplies and storage.) but though honestly my last week has been my roughest in months ... I choose to be brave! Eating was rough this past week. Part of living with Gastroparesis is times of uncertainty. My body has been more nauseated and I'm not hungry. I also am getting full easily. So force feed. I did not give up last time... I did these same things they simply did not work then... It's in the Lords hands, that I do know. So we take a deep breath and count our blessings. Enjoy the moment and rejoice in the good! God is oh so good! I will rest in him. Hopefully more supplies will be boxed up soon!! "It might take a year, it might take a day, but what's meant to be will ALWAYS find a way."-Unknown. Heavenly Father has been telling me to be strong and courageous and that's what I am doing. "& I am not my body" is this year quote. If anything it's something I have learned this year. Though it's not always that simple I will do my best. Keep going! Two years ago TODAY I had my first NasoJejunal tube placed.
(Because I have Dysautonomia and it gave me Gastroparesis). I didn't know this until after I boxed up my port supplies. Crazy the reference of time. I did not know those feed rates would stay low for years. Leaving me with the only choice to also add daily IVS through a port to drink. Today I boxed those memories up with hopes they stay in that box. I never would have guessed getting better would ever be in my path. Not a six months ago not a year ago. Not two years ago. Who knows maybe this will last a year or six months. But something nothing can take away is the knowledge that my body can Improve. End of story. Don't give up on yourself ever! No matter what battle you face, let God help. You. He will be there even when things are ugly and not going your way. You are too precious! Chins up-Chelle (I am still on formula. I think it's helping. Had to cut back to half a can because I was getting sick but my theory is half a can is better than no can... And I hopefully can bump it up. I am eating by mouth and drinking. I am putting the formula into my stomach.
Not into the small intestine we are using My new friend the belly still. That in itself is a blessing.) #update 

Friday, January 6, 2017

Protein Saga 2017/updates

Well my body has slowly been declining all week. (Severe fatigue.) it got so bad I ended up seeing my doctor today. I knew it wasn't the flu or a virus because nothing symptomatically stood out. Just major fatigue. Hair loss. Freezing cold. Insomnia for the last week but sleeping 12hours a day when I would sleep... But waking up feeling like I never slept at all. I've been eating good and doing well but my body is not absorbing protein in a regular form. My formula was "pre digested" so already broke down. So, I get to have some formula again. (But it should be temporary) it's kind of like training wheels my body has to relearn how to absorb and digest some of these crucial nutrients. It has not had to, when the body doesn't do things for a long while, It needs to be retaught. Hopefully overtime the Normal proteins in foods and over the counter nutritional drinks will work. (That's the plan) but this specific protein is already broke down, that is in my formula. Kinda hard to hear, kinda feels like going backwards... But it's not. I just jumped a little too fast for my body to adapt. It doesn't mean tube removal is out of the picture I can drink this formula. Yuck but it can be done if needed. Plus my chest X-Ray is clear from when I had phnemonia in October. (When I was in ten hundred ERs being told how nothing was wrong. But I had phnemonia from aspirating during sugery for my feeding tube) I never received the news of phnemonia until a month after... When my kidney Doctor accidently got the medical records faced to her. I am feeling blessed and relief. I have full faith in my Heavenly Father. Bright things ahead does not mean bumps won't be in the road. GAstroparesis is always going to be mean and unfair. My heart hurts today. Too many are loosing the battle that's my battle too. "Don't you give up. Don't you quit. You keep waking. You keep trying. There is help and happiness ahead. It will be alright in the end. Trust God and believe in good things to come.-Jeffery R. Holland. I am playing "yeah but" ... "Yeah but my week wasn't all that bad look at these silly selfies despite the chronic fatigue..." 
My first dilly bar in years.... (This was this week) 
 Life is good. Ride the tide-Chelle