I am going thru the same thing. All they wanted to do was colonoscopys and colonguard and check for colon cancer etc and it is none of that. The medical community has not helped me at all. Thank you for your story. I am a Christian and I am just holding on to hope and faith that I will be healed. Its really all I have. I pray for your complete healing too.
Thank you, Claire. I have been focusing on nourishing my body as much as possible. I feel better eating a whole food plant based diet. My other ailments are less symptomatic like my inflammatory arthritis. When my gastroparesis is extra bad, I eat smoothies, soups, baby food, potatoes, etc until I feel well enough to eat more solid foods. But, I pack a lot of nutrition in my smoothies :) One thing I have found is that I need to be super patient. When something doesn't seem to be working, I want to switch things up and I was doing that so much I felt like I was on a rollercoaster! I have made a promise to myself that I will continue with what has been working the best so far and that is a whole food plant based diet. I hope you find some answers. I know the medical community can be a disappointment when searching for those answers.
Found your MG piece and then watched this. I was RN for 39yrs but had to stop for weakness and fatigue that was diagnosed as IBM probably because second muscle biopsy didn't match the first. No hope, no treatment, no support around here, friends all say the stupid things so don't talk to them. Tried to pivot and be positive and that has been rip roaring failure.Then someone told me I looked like MG, face weakness, eye pain, diff focusing, diff breathing, walking, chewing. I said I know but 5 neuros say is not poss as sero neg and getting tired of eyerolls. I gave the stern nurse eye and got a trial of Mestinon which relieved sx the first day but the rapid peak/trough was exhausting and upset my dog who is tuned in to weakness. Doing the ext release has given me some sort of life back some days but I am totally with you on how to plan anything. 5yrs ago I had a good garden, 3yrs ago had good sense to put in lots of perrenials and try container gardening. So many failures this year. Hard to cope let alone hope.2 rescue dogs make me walk and stop when I need,come back to house when really need, guard me, comfort me. 3 rescue cats act as heating pads that move during the night so with the bipap and oxygen I have real rest. I love the way you speak about this mess. I hope you have gotten through covid in good shape.Peace
Thank you for sharing. I’ve done more bucket gardening than anything else. I don’t do well in the heat at all. And it’s less stooping. But not as prolific. But I take what I can get 😉 Taking every day as it comes and adjusting and readjusting what is needed is so taxing. But so thankful that God sustains me and brings me new ideas to try. Blessings to you dear!
Hi how are you feeling today curious curious what I read did you say you felt better with mestinon the 1st day and are you still taking it does it help you
Hi Stephanie I was thinking about you the other day and prayed for you ❤️ it’s good to see you again thank you for sharing - as always you are an encouragement with your honesty ❤️ I too am battling chronic illnesses and it’s really hard but I’m realising some of the things you mentioned as well so it’s been encouraging to me to hear it from you too hope you are blessed with a few more ‘reprieves’ in the coming days/weeks praying for you xxx ps I think your hair is pretty it always looks silky and shiny on the camera
Stephanie Hopes yes I couldn’t keep going without Him thank you for sharing your story you really are a big encouragement to me may the Lord bless you I’ll also be keeping you my prayers ❤️Shabbat Shalom x
This is terrifying. I'm just coming off another 5 day vomiting episode. I had hoped you'd have some better news. Thank you for your honesty. I am praying for us all. 😔
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Thank you for sharing. Im so sorry your still suffering. Thinking of you
I am going thru the same thing. All they wanted to do was colonoscopys and colonguard and check for colon cancer etc and it is none of that. The medical community has not helped me at all. Thank you for your story. I am a Christian and I am just holding on to hope and faith that I will be healed. Its really all I have. I pray for your complete healing too.
Thank you, Claire. I have been focusing on nourishing my body as much as possible. I feel better eating a whole food plant based diet. My other ailments are less symptomatic like my inflammatory arthritis. When my gastroparesis is extra bad, I eat smoothies, soups, baby food, potatoes, etc until I feel well enough to eat more solid foods. But, I pack a lot of nutrition in my smoothies :) One thing I have found is that I need to be super patient. When something doesn't seem to be working, I want to switch things up and I was doing that so much I felt like I was on a rollercoaster! I have made a promise to myself that I will continue with what has been working the best so far and that is a whole food plant based diet. I hope you find some answers. I know the medical community can be a disappointment when searching for those answers.
Found your MG piece and then watched this. I was RN for 39yrs but had to stop for weakness and fatigue that was diagnosed as IBM probably because second muscle biopsy didn't match the first. No hope, no treatment, no support around here, friends all say the stupid things so don't talk to them. Tried to pivot and be positive and that has been rip roaring failure.Then someone told me I looked like MG, face weakness, eye pain, diff focusing, diff breathing, walking, chewing. I said I know but 5 neuros say is not poss as sero neg and getting tired of eyerolls. I gave the stern nurse eye and got a trial of Mestinon which relieved sx the first day but the rapid peak/trough was exhausting and upset my dog who is tuned in to weakness. Doing the ext release has given me some sort of life back some days but I am totally with you on how to plan anything. 5yrs ago I had a good garden, 3yrs ago had good sense to put in lots of perrenials and try container gardening. So many failures this year. Hard to cope let alone hope.2 rescue dogs make me walk and stop when I need,come back to house when really need, guard me, comfort me. 3 rescue cats act as heating pads that move during the night so with the bipap and oxygen I have real rest. I love the way you speak about this mess. I hope you have gotten through covid in good shape.Peace
Thank you for sharing. I’ve done more bucket gardening than anything else. I don’t do well in the heat at all. And it’s less stooping. But not as prolific. But I take what I can get 😉
Taking every day as it comes and adjusting and readjusting what is needed is so taxing. But so thankful that God sustains me and brings me new ideas to try. Blessings to you dear!
Hi how are you feeling today curious curious what I read did you say you felt better with mestinon the 1st day and are you still taking it does it help you
Hi Stephanie I was thinking about you the other day and prayed for you ❤️ it’s good to see you again thank you for sharing - as always you are an encouragement with your honesty ❤️ I too am battling chronic illnesses and it’s really hard but I’m realising some of the things you mentioned as well so it’s been encouraging to me to hear it from you too hope you are blessed with a few more ‘reprieves’ in the coming days/weeks praying for you xxx ps I think your hair is pretty it always looks silky and shiny on the camera
Thank you so much. I am sorry you are in a similar boat. So thankful we have the Lord to cling to!
Stephanie Hopes yes I couldn’t keep going without Him thank you for sharing your story you really are a big encouragement to me may the Lord bless you I’ll also be keeping you my prayers ❤️Shabbat Shalom x
Thank you and shabbat shalom to you!
This is terrifying. I'm just coming off another 5 day vomiting episode. I had hoped you'd have some better news. Thank you for your honesty. I am praying for us all. 😔
I am much better now!
Your instagram goes to a totally different person. Do you have a new instagram?
Yes. It changes a lot haha @little_bit_homestead
@@TheStrengthofEmpty thank you.
Hello I have gastroparesis and colonic inertia and I'm just wondering were you have been and how is your gastroparesis doing now?
I’ve been taking a break. My gastroparesis is stable and I am doing as well as I can. Slowly healing with a prometabolic diet.