Saturday, August 20, 2016

8-20-16

I'd like to open with a quote that I found two years ago and posted to Facebook... (2 yrs. ago to this day) "Turn your can'ts into cans, and your dreams into plans." That quote is such a good reminder to keep reaching for those goals!!! No matter what don't give up on yourself! I completed my first night of only water and sodium... (No added formula) I added a lot less over time... My body was eating 24/7 though at a slow rate. So I would get really low blood sugars if I had to fast even... So I was nervous! But I did not get low blood sugar! I have taken morning meds and am hooked up to an hour long breakfast feed. It's going but so far uncomfortable... (supposed to feed 4 times a day, my goal BUT it can always be modified to what fits my needs) I am still on cloud 9!!! I will start the kidney medication fludocort when I get my Normal Saliene liter with Potassium (if I just quit my IVS now I would have pretty low potassium due to a size effect of this kidney Medication) I also have to build up on the kidney meds and ween down from 2liters of fluid to 1liter of fluid (with all the right stuff inside) it's gonna take a little bit of time... But hopefully not too long 😊 I can't describe how blessed I feel! It's unexplainable. I'm not cured I am just not in need hopefully of daily Iv hydration my GI tract will do the work! And I am having "meals" 4 times a day so my body will helpfully quit starving! (To my surprise if you eat late at night or all night the next evening your body will get starving feeling... I've dealt with this issue for years and recently learned in my, "living well with GP book" that it could be the culprit of my starvations! ( plus it's better to use the body if you are able to, as its meant to be used! ... But it's all because my feeds went up! I had to do continuous, it was NOT a CHOICE it was just what my body could handle/tolerate. But those feeds kept me alive and still should of info backwards... Something  has "switched" that's POTS... Thinks switch off and on problems come up and get better or some problems never get better ... It's unpredictable minute to minute...We roll with the punches! Luckily my punches are good as of today!! Day one of meals (all daytime) and no food in my sleep just fluids! (I am so tired today and I think i will be resting!
But still happy and spunky from yesterday! Definetly a Jammie day! I feel like my body needs some recovery today from the busy week!! Please pray for my Momma Bear she has I think the same virus I had last month!! Or something similar...she is sick!! Makes my heart sad! I am not used to being on the other side of these things! (It is tough.. There is nothing I can do to really fix it... Though I want to!! Now I know how she and my family feels) She has been so busy taking so much care of me with surgery and post surgery issues! Then she works full time and on her time off she takes care of me... She had  to drive me down and back to my neuro appointment yesterday. Next week she works and drives me some more down to the valley for surgical clearance appointments to start Physical therapy (PT). (Definetly ready to start having a lot of pelvic floor tension myalgia!) I am 23 and  Mom has never left me alone in the hospital for more then 30minutes... No matter how long or how random those hospy stays are... She knows I am a big girl but those doctors and nurses typically quit giving me care when she leaves. (Even for a few minutes, and I'm sick so she has to be bossy too... And tell them like yes she is complex but take care of her!)  It takes a team! (How amazing is my mom??) I think she is amazing and I love her to pieces! Truly a sacrificer, selfless, caring, most loving person I know!! 💗
she is my rock and there could never be enough thank you's for all the thanks she deserves from me! Plus, all her help, patience, guidance, and endurance, faith through my medical journeys... it's not been easy on her either! But she teaches me what kindness and compassion truly is daily! Hard working, take care of all Momma! She is amazing and I lover her!💝 feel better soon Mom, Love Michie) Xo!!! To all who are sick today wether it's a cold, a chronic illness, recovery I am cheering you on! You're in my heart and my prayers!! (You too caregivers, I don't think you guys always get the credit you all deserve, thanks and so much Love to all caregivers!) xoxo-Chelle