Why I Never Say Never
I’ve seen a number of statements lately from idiopathic gastroparesis patients expressing sadness/anger/frustration that they will “never” have, do, eat or be such-and-such ever again. While I certainly understand and respect that everyone’s experience is different, this always strikes me as odd since I tend not to think about the disorder in such finite terms. I suppose for some people the fact that so little is known about “idiopathic gastroparesis” seems like a life sentence — to me, it’s quite the opposite.
I look at all of those unknowns and I see opportunities. I think about the medical and scientific breakthroughs that have come for other diseases in the recent past and I can’t help but feel optimistic that similar advancements are inevitable for those of us with gastric motility disorders. It’s true that right now very little is known about the enteric nervous system, the likely root of the problem for many of us. However, there are physicians and researchers dedicating their careers to studying the ENS and it’s dysfunction. I’m certain that breakthroughs are eminent. Maybe not tomorrow or next month, but certainly in my lifetime.
Until I know what caused my digestive system to stop working, I don’t see any reason to believe that it can’t be fixed. Some may think that’s idealistic, but given the facts (or lack there of) I actually thinks it’s quite pragmatic. In the meantime, I’ll continue to do my best to live (well!) with gastroparesis and, hopefully, help others do the same.
**In no way is this meant as a judgement against others. It’s just a different perspective to consider.**
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14 Responses to “Why I Never Say Never”
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Well said Crystal! I totally agree. I find words have power, and words like “incurable” and “chronic” lack hope. I have to have hope to go through this, and I do. None of us know what tomorrow will bring for us. I’m happy for today though, even with the challenges. As you said, it’s a different perspective to consider. Happy New Year!
Crystal, I agree 100%. It is easy to say will never eat/do
this again, esp when we are feeling bad, but….like you say, we
just never know what tommorrow will bring. It may not bring a cure,
but it may bring a better treatment, or just lead to us feeling
better (some GP patients do improve). So we never do know what’s
around the corner, and hard as it is, no one should ever say always
or never! Happy New Year!
I couldn’t agree more! Despite the obstacles those of us
face with this illness, we have the choice to focus on those things
we can do (as opposed to those things we can’t do).
What a great post for the New Year! I, too, believe in focusing on the positives rather than the negatives. GP continues to rock my world, and just like others, not always in a good way! But I have learned so much about myself in these past 10 months since being diagnosed. I have come to realize that whatever happens, being truly in the moment and grateful for small pleasures really do count.
I agree completely! There is always hope..especially when we choose to view obstacles as opportunities. Best wishes for a happy and healthier new year.
Thanks so much or putting this in perspective, especially for me today. It feels like you take one step forward only to take 3 steps back! I am so thankful for my new medical team at Indiana university medical center.. I did not have them a year ago, so I have to take the good with the bad.
I totally agree! A blogger/researcher has helped me get started with literature research of possible causes and posted some ideas here: http://perfecthealthdiet.com/?p=1674. This year alone specific viruses have been found to underly chronic fatigue syndrome and a number of types of cancer and it appears viruses might also be the root cause of (non-diabetic) gastroparesis. My plan is too aim for the best nutrition and immune support possible while I figure out which underlying pathogens are keeping me from getting better. I have an array of tests lined up and am even considering medical school after I finish my current phD research. I will let you all know if I find something
Anyway there is definitely hope!
Ooops! Just noticed that after you were kind enough to allow me to link to my GP recipe blog the link was wrong! I must have been malnourished when I typed it! It’s been corrected. Thanks, Mary
wow, i really needed this encouragement today. the last few days have been very difficult! plus my bladder is acting up and i have been bowel cleansing, so you could imagine how my blood sugars have been. it’s good to hear some positive encouragement. it is hard, but we cannot give up hope. hope, in and of itself is truly a gift. thank you guys!!
Thanks for the words of encouragement. It is easy to get discouraged especially when you don’t feel well. Let’s just keep praying that they find an answer soon.
I am supposed to start this new year with starting the drug domperidone……..I am supposed to order it from Canada drugs. Is this illegal to order from Canada. I live in the US? Can someone please help me out with the legal issues?
thanks,
keep up the hope,
Debbie
My daughter recently had the pacer put in and is very discouraged at the lack of results. She has been battling GP for 4 years (since she was 17), and only recently got a confirmed diagnosis. She is very sad most of the time, vomits everything she eats, including water, and now has broken up with her boyfriend of many years, saying it is unfair to tie him down to someone who will never have a “normal life”. It is so hard to be the parent or caregiver to someone who has this terrible disease. Most people think we are either exaggerating the symptoms or hiding an eating disorder. I was nice to read your post about taking pleasure in the small things and being grateful for what we do have.
Hi, Debbie. Nope, not illegal! Your insurance won’t pay for it, but as long as you have a prescription from your doctor, you’re all set. There are *lots* of GP patients in America doing this. I’ve used http://www.CanadaPharmacy.com and was happy with their service. They’re actually based in Washington state. Hope that helps!
Warmly,
Crystal
[...] I’ve said it before: the internet can be a scary place for GPers. Pouring through the message boards and Facebook pages often leaves people feeling confused, hopeless and afraid. You’d never know from most of what’s out there that gastroparesis can get better over time (probably because the people who are feeling better are too busy enjoying it to post about it!). That’s why I’m so grateful that Shana agreed to let me share her story with all of you. I hope that reading about her experience gives you a spark of hope and reminds you why we “never say never.” [...]