Tuesday, August 9, 2016

Today is Great. Today is Great.

Today is Good. Today was Great. And my title was going to continue with today is the 8th but it is the 9th. Rats! Haha... I am obviously feeling much better today!! And I really hope it stays!!! (Knock on wood and fingers crossed) my pcp appointment went really well!! (Big smiles) my weight is down a lot but I had a mean summer (full of set backs) but here is my BIG NEWS for the first time in years I haven't taken nausea meds in days. DAYS!! What!? I have been on the highest doses 24/7 every day for years... Idk if this is going to last or be a new thing. My feed rates are improving like never before. I am not loosing my gj tube by any means and I will never be cured of Gastroparesis but I have an opportunity knocking at my door (possibly) and you bet your bottom dollar I am going to give this window of opportunity my very best shot! My pcp was super shocked by all this (I am too)  and I was all, "I am done with my feeds and it's like 1p.m.??" Her reply was "seriously? Well hey you get a break from being chained to a backpack for the afternoon!" (Which yeah that's true) but then I was all, "well can't I start putting fluids in my tube after feeds? Instead of having to use my port for IVS??" I would actually prefer 24/7 feeds if fluids are included and no IVS and port being accessed always." And she was like, " oh yeah!" (She totally agreed that would be better for me too)... "Are you sure you want to be hooked up all the time." Me: "if it means I don't have to have ivs every night and always am accessed port then yes." (I have been hooked up 24/7 from the dirst day of tubie life... I would take a gj tube over a port any day) it's all a trial and there are things that have to be met and if all those things go right we still have a mountain to climb.....it's gonna take time and my body could be like oh, never mind I don't want to work anymore....and that's just to get off ivs... But it's fun to think about.! They wouldn't take my port out (let's clear up some possible confusion ports are surgically placed basically little circles and they have a tube that goes up the jugular vein then goes by your heart in a main artery. All under the skin. They then stick a needle into the circle and it's like a Iv that lasts for a long time (unless issues occur) it could  be for years. But when that needle is in the port. It is an infection risk for a blood infection called sepsis and that is deadly. It has to be sterile procedure when they put the needle in and cover it then you have to keep it dry and very clean... You would probably know a port as the things cancer patients have in their chests to recieve chemo treatments) and I would have to talk to my neuro if all goes well... That's if I can even pull phase one off... But it would be SO cool!! I wouldn't have to stress out over sepsis or tape a ziplock to my chest every time I shower!!! And it wouldn't hurt when I slept in it wrong!! Now they'd leave my port in... It just wouldn't be used every day. (Accessed. No needle in my chest) It's only a infection risk when the needle is in the port reffered as accessed! I don't have appointments like these often so I am just going to enjoy my moment of excitement, goodness, and sit here and reflect the blessings I have in my life. Even if all this big idea and new improvement totally stop tomorrow and that switch goes back to where I was... I am always going to be grateful for this day and the happiness I feel today in my heart. I had a horrid past while, it's worn me down. But it shows you never know what tomorrow will bring. Maybe I won't get off ivs... But there is a possible chance on the table for the very first time! I am still taking a medical break this month. (Does this show how you can not fully take a break in chronic land) but my breaks means no specialists. No procedures. (Unless I absolutely have to) I'm taking a break. My doctor even agreed it was wise. You can only fight for so long. It's okay sometimes you have to take a step back. Don't give up the fight just rest for a bit and recharge those batteries. Especially if you have gone through a particularly hard time. (I have taken medical breaks in the past, several times. They always help) I truly advise them. I hope everyone is having a great day! If you aren't I am sorry and I hope better days to come! Hang tough. We can do hard things XO & HUGE computer hugs-Chelle My First attempt @ https://youtu.be/N4Bkh8oz9e0