Thank you so much for this because after the medical trauma I have had online and off with my tubes I forgot it was awareness week. I don't talk about my tubes anymore due to a lot of the misconceptions about tubes. This has been really painful and people were saying mine was "an accessory". I am going to share this at some point to my community tab to just answer people's questions. I just don't ever wanna talk about my own condition again so i am glad others are saying this.
I'm glad to see you are feeling better. I never really thought about feeding tubes before watching your videos. This was very interesting - thanks for educating me!💖
When your health fails all these interventions come gradually, one at a time, and they become part of your life, your normal, your “story”. Its not like cramming for a test, its like little bites of information fed to you at each appointment over weeks, months and years that build one on top of the other. Some people choose to just go where the doctors steer them, but when you are a rare/complex case you pretty much have to become an expert on your condition and body. And most people in that position WANT to learn as much as they can because the more we can handle our own care the less we have to depend on others- especially home-health-aids, and it gives us that much more control and freedom.
@@ArealMrsSmith yes, you're right about that, but hers is such a complex case... She could be a nurse for sure. I'm sure that her fiance will bed excellent because of paying such close attention to her issues too. Bless them both
Have your doctors ever discussed a pacemaker for your gastroparesis? My friend had one placed and worked wonders. (I know it doesn't work/isn't best option for all, just curious) can't wait to see how your gardens are coming!
Can I ask a question? Perhaps you touched on this in another video. How do you manage chronic pain? I also have mast cell disease and gastroparesis and am allergic to a lot of stuff. Thankfully I don’t react to any pain medications. Do you? And if so how do you handle pain? I feel like pain is the worst part.
Glad that you are so open and informative about your situation. As a fellow EDS patient I learn so much from you!! Thanks.
Thank you so much for this because after the medical trauma I have had online and off with my tubes I forgot it was awareness week. I don't talk about my tubes anymore due to a lot of the misconceptions about tubes. This has been really painful and people were saying mine was "an accessory". I am going to share this at some point to my community tab to just answer people's questions. I just don't ever wanna talk about my own condition again so i am glad others are saying this.
I'm glad to see you are feeling better. I never really thought about feeding tubes before watching your videos. This was very interesting - thanks for educating me!💖
I love everytime she posts...do informational and she is such a sweet soul 💝
She really is 🥰
I like it please send more
Don’t worry about it being delayed. Love you and your family
Wow I am always astounded how you recall so much medical information. Bless you and I hope you can improve.
When your health fails all these interventions come gradually, one at a time, and they become part of your life, your normal, your “story”. Its not like cramming for a test, its like little bites of information fed to you at each appointment over weeks, months and years that build one on top of the other.
Some people choose to just go where the doctors steer them, but when you are a rare/complex case you pretty much have to become an expert on your condition and body. And most people in that position WANT to learn as much as they can because the more we can handle our own care the less we have to depend on others- especially home-health-aids, and it gives us that much more control and freedom.
@@ArealMrsSmith yes, you're right about that, but hers is such a complex case... She could be a nurse for sure. I'm sure that her fiance will bed excellent because of paying such close attention to her issues too. Bless them both
Aww poor you Hun love watching hope feeling better soon
Yes I have this
Have your doctors ever discussed a pacemaker for your gastroparesis? My friend had one placed and worked wonders. (I know it doesn't work/isn't best option for all, just curious) can't wait to see how your gardens are coming!
We are so so sorry you’ve not been doing well. 😢
5:58 What is HLH? I googled it and got some really frightening results, so I'm hoping it's not what I think it is. 😔
This might sound insensitive so I apologise in advance, but can you drink and if not do you get thirsty, and then secondly do you miss eating food?
Can I ask a question? Perhaps you touched on this in another video. How do you manage chronic pain? I also have mast cell disease and gastroparesis and am allergic to a lot of stuff. Thankfully I don’t react to any pain medications. Do you? And if so how do you handle pain? I feel like pain is the worst part.