Linda Inman
Posted 01/17/21
Getting a picc line tomorrow morning. What have you all found work best for covering for showers/ baths? Thanks! … See MoreSee Less
Calandra Rubin
Posted 01/15/21
Finally got my hands on this! It was a ridiculously long and complicated process. Why was it harder to get Mylanta and lidocaine than it is to get meds that hurt the stomach?
The medical system is broke. … See MoreSee Less
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Robin McNamara
Posted 01/13/21
My GI doc retired and I saw a new one last week. He refused to prescribe one med because he didn’t believe in it, said he had to look up another. When I asked how many gastroparesis patients he had I was told 15. He was then kind enough to tell me the different kinds of gastroparesis- diabetic, and ideopathic and that meant no known cause.
Needless to say, I have two doctor “interviews” in February.
I cannot tell you how upset I was leaving. I couldn’t decide if I wanted to go back in and say words I’d regret, or just cry.
I put my big girl pants on and started booking appointments.
I always hear how everyone is treated, but my doc was one in a million, and treated so many with gastroparesis, and had also told me how more and more cases were marching through the door. And now, since my first doc – I was treated like a child. Sorry doc – you are not the winner….. … See MoreSee Less
Calandra Rubin
Posted 01/11/21
I spent the past 4 days trying to get a script for a GI cocktail sent to my pharmacy. I’m well familiar with the gastritis that is happening and I know that will help, but I’ve only got them in the ER. Well, trying to avoid ER because covid and I really can handle this at home. Today I get a message from the nurse that she fixed the script, but if it is bad I should go to the ER.
I save ALL these messages, so when the ER docs roll their eyes at me, I can tell them to direct it at their peers. If I would have went to the ER on Friday when I asked for the script, I would have already been home for 3 days feeling better. Instead, my tummy is still on fire and I’m so irritated.
THIS is why we constantly debate whether or not to go to the ER. We are constantly passed off and then treated poorly by undereducated medical staff. I am trying desperately to do the right thing, work with my drs, and stay OUT of the ER.
I hate this. … See MoreSee Less
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#gastroparesis #CureGP … See MoreSee Less
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#Gastroparesis #CureGP
Link to the new Vanda commercial:
www.ispot.tv/ad/tjfe/vanda-pharmaceuticals-gastroparesis-study
Vanda Pharmaceuticals TV Commercial, ‘Gastroparesis Study’
People who have been diagnosed with gastroparesis and feel severe nausea may qualify for a clinical study being held through Vanda Pharmaceuticals. … See MoreSee Less
Videos
"Do not let your fire go out, spark by irreplaceable spark in the hopeless swamps of the not-quite, the not-yet, and the not-at-all. Do not let the hero in your soul perish in lonely frustration for the life you deserved and have never been able to reach." —Ayn Rand, Atlas Shrugged
It is all about perspective — and that is sometimes difficult to change. It has been an incredibly difficult year, one fraught with setbacks and disappointments; yet, as with most trials, if there is an upside, we are stronger for having endured it.
Our #Gastroparesis community is in desperate need of change in this upcoming year. But make no mistake, we do not seek the kind of minor adjustments we are currently seeing. We need a total system change that puts the patient at the center of everything — from medical care to political policies. We need radical, transformational change, free from entrenchment.
People are quick to point out obstacles and list the many hardships in overcoming them. They will tell you what they believe CANNOT be done and why you CANNOT do it. They will set limits for you based on their own experiences and their own flaws and shortcomings. But you are not obligated to believe their version of the story, and you are not required to respect the limits they have set before you.
Write your own story, and do not allow the narrow vision of others to keep you from seeing the bright light of possibility. #CureGP … See MoreSee Less
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