Again: Remember deadline: January First… Get those videos in or pictures of you showing those muscles with tubes or devices you require to live (to proudly show and own those diseases). I REQUIRE: VIDEO (We only have a few and would appreciate more so it is more interesting), NAME, AGE, and PRIMARY DIAGNOSIS (not all of them) Sorry, it would be too long if we did that. But have fun with it. This extends to FAMILY members, caretakers, nurses, doctors, etc. So get at it! Enjoy!

  • 3 Responses

  • Hayley says...

    Hi

    I am a newly diagnosed gastroparesis sufferer from South Africa, how do I go about getting onto the blog?

    Thanks,

    Hayley

  • Mara says...

    I was diagnosed with “idiopathic” Gastroparesis December 19, 2012, though I suspect my Gastroparesis is caused by Sjogrens Syndrome (an immune disorder I have), which can also affect the stomach muscles. I’m female, currently, 46 years old.

    Though I am currently not on a feeding tube, I can only eat three meals a day from a very limited food selection, and over time, my body is rejecting regular food slowly. I know you are requesting photos and videos from individuals who are using feeding tubes, but what about those of us who are suffering from Gastroparesis without having to use feeding tubes. Can we also share photographs on this site?

    I’d like to show a photograph of a cabinet full of Gerber’s Baby food I have in my home, and have the caption, “How would you like to eat this on a regular basis?” Though people without feeding tubes can eat, their food selection is very meager, not appetizing, looks like dog food (especially the blended variety), and repetitive.

    As a result, there is severe fatigue and other unpleasant symptoms which make daily routines a chore (e.g., continuous constipation, unwanted weight gain, diarrhea, loss of appetite, painful gas pockets trapped in the esophagus, etc.). I can eat just enough “to survive.” I spend the majority of my day/night in bed because of too much pain and being too tired and exhausted from lack of proper nutrition – among other things.

    I’m the only non-consumer (e.g., someone with GP) in my family. I have no one to relate to, since everyone around me can eat in a normal way. Doctors are really of no help because they don’t know enough about Gastroparesis to give me any real practical solutions. Therefore, I suffer alone. 🙁 It breaks my heart to see young girls on feeding tubes. I wish I could reach out to them and be their friend, though I’m just an “old woman.”

    Something really needs to be done for the young girls and ladies on feeding tubes. How can I make some kind of “contribution” to this blog?

    ~ Mara ~

  • Kirby says...

    I will get back to this comment tomorrow – but yes. That is a great idea. I’ll see what I can do regarding that option. At the very least, you can send me the pictures and comments you have for them, and post them in a special section that I would make.

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