Відео

Hi I enjoyed your video. I am on Sandostatin 100 mcg for chronic pseudo-obstructions, Intestinal failure. I have been on it for about one year now. I am still able to eat some solid foods but do drink a lot of protein drinks. trying to stay off of Tpn. Just wondering what dose of sandostatin you are on? Do you really notice a difference with your small bowel motility? I do question its effectiveness. Though in the beginning i felt it to be helpful. I have an ileostomy. Not an easy road but we must keep moving forward! I see this video is 12 years old. Hope you are doing well! Hope to hear from you. God bless you ..

Thank you. My quality of life is garbage. I'm fighting for fluids♡

How are u doing now u feeling ok ? i have pots am in uk

superb carucior imi doresc si eu unul .

I have a drive standard cruze 3 folding wheelchair and it works great for me.a person don't need most expensive wheelchair to suite mobility needs. Many rigid wheelchairs sold at medical supply stores and your spinal cord expo sellers will try to talk people into buying and tell customers oh this is what you really have to have and customers buy them so they can look popular and to impress friends. I have spinal cord injury but my wheelchair my insurance covered works just fine. You would be surprised.

miss my friend.

Do you know why you don't use subcut fluids?

I found out you are no longer with us Milly but I know exactly where you are. You are where you always knew you'd be. I couldn't be more happy for you. Your poor family and close friends must be devistated that they only had you for such a short time, but rejoicing that you are now whole and healed

Hi I was wondering if you live in WI as I know Dr Grubb is a WI Dr I live in WI and am trying to connect with fellow POTSies in real life, it's so hard for me to feel connected online only

Its us who are thankful to have met you as well Milly. Love you forever and always, RIP

Knowing that you are no longer here is a huge pain in my heart. I don't know if there is a heaven, but if there is you are definitely there, riding your horses. Love you.

I've been having trouble getting my PCP doctor to write a prescription for this. He doesn't really understand how it works and feels it's very unusual to be done at home. I was found to be dysautonomic when I was in the hospital for 11 days and my blood pressure was all over the map and that was over a month ago since I've been treated. It's miserable to have so little energy and feel bad all the time that I have to pretty much live in bed just to conserve my energy. I'm also looking into having my veins checked for possible narrowing or blockages which can also cause dysautonomia, but my doctor is stalling on helping facilitate that too.

<3 much love to you my friend

Do you have this chair still? What would you change after all these years? Thank you for the video.

Thinking about you and praying for you and your family. May 2015 bring peace and joy, less pain and better BP numbers!! Xoxo

What vent/bipap are you on? I had a trilogy 100 for a short while.

Love you Milly

Does your sister need to be looked at as well? Genetically/passing faulty genes down to her future children? Love and hugs and many prayers to you and your mom. I saw the bruises, ouch! Glad it wasn't anything more serious!

Praying for you both

Diagnosed is a relief and fear ,keep your trust in god and he will see you thru

So nice to hear your voice again! I am praying for you and am happy and sad about your diagnosis. Miss you lots. Maybe I'll be able to get to PA again, and I can see you in person once more :) love you my friend!

So good to here that you finally have a diagnoses and so good to see that god has answered all our prayers for you. You are so amazing and great to see you smiling still despite all you are enduring everyday. Massive hugs Milly. Helen :)

So nice to see a video from you. I have often wondered how you were doing. I'll be keeping you in my thoughts.

Hi Milly! Lifting you in prayer and keeping the faith that God has great plans for you and now that He has shown the truth, that He will show the way to healing.

OOPs and sweet and happy disposition around here. No doubt you are a one in a million. Still praying for youfriend God bless you. Kym

Hi there Milly, Good tosee you again. Sorry to hear about your DX and that your health is keeping you home bound.We aure miss your smiling face

Yes we lean it far forward, Paraplegics and many Quadriplegics have the back set very low, and often tilt it pretty far forward, past 90 degrees, rehab doctors cringe when they see us but we sit it in, and adjust it for our comfort. You'll find after a while sitting in it, adjustments made will make it fit better, and more comfortable. BTW tubular is better, the one you have, if you lean forward often, it will twist, won't stay set no matter how tight you get it, I tried it and had it changed out, scissor brakes are the only way to go, once you jam your thumb down in those that you have, you'll figure it out, you'll also get to push the tire, instead of the rim, it's a habit we all get. I have the Q-7, I don't think you understand chair adjustment, you can slide the axle back to move the center of gravity, dump is dropping the rear of the chair, bucket deals with tilting the back forward. I have spent years in my chair, adjusting near everything on it, if it's tippy, simply move the axle back about 1/4" at a time. I had a chair where I often flipped over, the brakes contacted the framework, couldn't move them further back, so if I put the axle where it needed to be for my center of gravity, the brakes wouldn't lock on the tires. Have you made any adjustments since delivery?

Hi Milly, I dont have your email handy, could you please email me on strel933@gmail.com I wanted to ask you something, Val ( Nina's friend)

This is helpful. Thank you.

Awee cute horse(: could you suscribe to me !! i suscribed you(:

Do you remember the Mile Stojkoski? (Mile Stojkoski... Google Search) After 16 years of persistence, consultation with a specialist doctor, EXERCISES, belief in yourself Manages to stand on its own two feet Happy is this good news to share with all of you with a desire to encourage you to believe in yourself ... If you speak to us, please contact us on Macedonian, Serbian or Croatian language. e-mail: hovenera@gmail.com Please forward the information

Lol. What's the song called?.

i like too ur wheelchair very nice where can i get ds wheel chair i am sunil from india plz inform me suniltk94@gmail.com mob +919947949494

quickie gt

What type/kind of manual wheelchair is that?

How was your Easter?

yay, no lines! :o) you seem chipper in this vid! :o) still rootin' for Team FlyinHyy! You rock!

@FlyinHyy: EEE! DEACCESSED FREEDOM! *dances* Aaagggh the dreaded T Word (or acronym really)! :( I'm sorry you're back on TPN angel, but I'm glad too because you have been so so wasted & weaker than even a potsy mito girl should be. I hope you had a good Palm Sunday! I love you so much! Xoxox

I love it! thank you for sharing other passages! I read the one from Mark in the elevate vid this aM. don't remember the part in Luke wow incredible<3 He kept going for us! I was dx;ed with HMS by Dr Grubb

they sure don't~ xo

My gut and your gut do not feel like playing nice! Love seeing your videos :)

Hey girlie ;) just wondering, how many calories are you requiring? I just ask bc I have to take in 3,000 just to maintain weight. I don't need to gain any at this presenttime but when I did...sheesh. Anyway, praying for your situation and I think you are so strong and beautiful. Much love, Danielle

Good to see you I have had you and Nina on mind alot

Hey angel. I'm sorry things are so rough right now. I get ocular migraines too & they're brutal. :( I think those of us w/ debilitating illnesses are excellent tools for God b/c when people see someone who suffers greatly in Life but still has such deep faith & love & passion for Him, it is in & of itself a VERY powerful testimony! You are totally anointed precious one & you help so many! I love you & always praying for you! Reach out anytime okay? It's okay to receive support too. ;) <3

Hey Milly, Great hearing from you. I hope all goes well with your neurology doctor regarding your headaches. I shall reply to your email later as I have a doctors appointment to attend. God bless ~ Helen

@marieked sweet! glad it helps you hope it works for me

@RecoveringPotsy youre the sweeetest! thank you, glad it was helpful to you I hope we can figure out my gene Dr M says he's sure there is one

@NJSMKMMS hey kym good to hear from you, will write you an email!

would do that. Anyway if you don't mind you could keep us in your prayers God knows we are all doing it tough right now. You are in mine, just so you know. lol I worry when you don't pop up on YT also just so you know. Anyway thanks for being hereand thanks for posting. Best wishes Kym

anything else done by anyone ever. I do use a bit of alturnative stuff and it helps me so I would love to be able to keep doing it LOL but it is not helping me this time. Eventually when I can't stand it any more I would like to try disc replacement but they won't do it on me here in Aus. Not many are doing it and they only want the ones that are going to have the best results. Clearly thats not me because I will need a whole spine full of them to get back to normal functioning and that they