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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
5/2/12 11:36 P

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It is definitely difficult when doctors don't understand what's going on and choose to not believe it. I can tell that losing weight to GP makes people think I'm anorexic or bulemic. Then many people look at me and instead of seeing that I'm underweight with no muscle they think I workout nonstop. It is bad enough to know people are prejudice - moreso that doctors are prejudice.

We might have different forms of the same condition, but we all know what it's like to deal with the difficulty that is the medical community that doesn't fully understand our condition and doesn't have the ability to cure it.

Hang in there and know we'll be here for you!

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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HEATHER3435's Photo HEATHER3435 Posts: 3
5/2/12 4:10 P

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I completely understand about the "You don't look sick Syndrome." I always get that and since I have gained weight, people really don't think I have problems. My gastroenterologist at Wake Forest said that he is coming across more and more people like me who gain weight versus losing it. He has many patients on both ends of the spectrum. I too vomit so my ex-boyfriend and those close to me knew I was sick, but it is hard when the rest of the world looks at you as if it is all in your head. The more you guys share, the less abnormal I feel. It is so nice to know people understand. I hate that we all have this, but I am grateful for people that understand what life with gastroparesis is like!



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GUTHRIESM's Photo GUTHRIESM Posts: 47
10/16/11 9:54 P

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I guess the only "perk" of losing weight - I saw a bunch of friends who saw me in July and they were shocked. They had never heard of GP but they could tell it was serious since I lost nearly 40 pounds since July.

I've dealt with the "you don't look sick" mentality for most of my life. I look like a healthy 29 year old (in fact I look fabulous- I'm *almost* model thin!) but I have handicap parking due to degenerative arthritis.

Unlike others, all food smells fabulous! That is probably the hardest adjustment I have had with gp- that and just convincing people to enjoy food even if I'm not eating (I am now on TPN exclusively).

Do your homework. Hopefully your husband will start to understand. I was fortunate again (the irony) that since I have vomiting predominant, my husband is well aware there is something seriously wrong.

Don't think of organ donations as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

"It's tough to make predictions, especially about the future." ~Yogi Berra


1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
10/15/11 7:19 P

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The sad thing is estimates are that 4% of the US population has some form of digestive tract paralysis. That's 1 in 25 people. Diabetic gastroparesis has affected about 20 million people around the world. The last thing this condition could be called is rare, yet it is treated as such by too many people.

I can't handle smells. Many make me instantly queasy, or hungry which is worse. So I'm afraid to even try things that should make it better. Also I avoid medications as much as possible because the side effects tend to hit me much worse than the meds ever help. I take protonix to keep the acid down (my GERD test showed just 5 days after stopping the meds I had 1.6 pH in my esophagus) but that's after going through probably a half dozen other meds in the last 10 years. I have eosinophilic esophagitis (white blood cells line the esophagus and prevent it from working) and it flares every time food backs up into my esophagus because of my GP. It's treated by swallowing the spray from a steroid inhaler. It was so bad when it was diagnosed that eating just a half cup of food in a day made me lose my voice for several days.

There are several motility clinics in the US. Several in our team have gone to other places and gotten help as well. It's a matter of finding which is closest, but they all know about GP.

This is a difficult condition so it's good to stick together. Check out the video I have in my signature, but warning - you may cry. There are people who have it worse, but anyone who suffers has it bad enough.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
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My sparkfriends are my greatest support and I'm grateful for it.
MOMMAMONKEY04 Posts: 5
10/14/11 10:41 P

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Wow - What a story! I understand the dr thing. My GI dr told me to just take my reflux medicine and eat the GP friendly diet that they had printed off the internet. They really couldn't give me any more info on it. I found out later from a friend of mine who is a nurse there that they maybe have one patient a year who has GP so they don't know anything about it. I also saw a nutritionist but I knew as much as she did and my info was more current.

When I went to see my acupuncturist the other day, I was telling her all my current symptoms and she said "wow, just by looking at you, I'd never know you had all that going on." I agree that telling people about it is the first step to finding better treatments. I tell anyone who will listen also. Unfortunately, some people perceive that to be looking for attention and give me grief about it. :o(

I'm sorry about your eating disorders and how much they have influenced your symptoms now. I'm sure you have already tried this, but I use QueaseEase. It's aromatherapy that I keep in my purse. I take a few big whiffs and within 5-10 minutes I feel much better. When I was pregnant, I took half a sleeping pill and 50mg of B6 (to counteract the sleepy part) for my nausea. I think I might go back to that on bad days. Are you on anti-reflux meds too. I'm also interested in how your esophagus is doing after all those years of throwing up.

I'm glad you are going to the Mayo Clinic. They seem to be some of the only ones who actually know anything about this. I wish you well and look forward to hearing how things go.

Thanks for listening and sharing your story. Hearing what others go through is comforting (even though I feel bad for you). Take care!

1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
10/14/11 2:30 P

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I can't tell you how many times people have said 'you don't look sick' or 'that's not possible' or have hinted that if they haven't heard about it then I must be making it up. Unfortunately, the only way to change that is to inform the general population. When cancer, AIDS, arthritis, diabetes, etc were first discovered and diagnosed in living people (as opposed to upon autopsy) I'm sure people said the exact same things. This is why I have no problem telling anyone who will listen about the condition. The more peple hear about it the more information will be circulating so people know about it. With hope we will find better treatments or a cure soon so we won't have to convince everyone that this is real, but until then we inform those who will listen.

Have you heard the story about the guy who goes to the doctor, hits his palm on his elbow, and says 'it hurts when I do this'? The doctor says 'well then don't do it." That's how I am with vomiting. I dealt with bulemia when I was younger (I've probably had a very mild case of GP my whole life, but was told it was in my head, yet when I ate I was in pain, added to no emotional support throughout childhood or as a teenager is probably what triggered my eating disorders) so I've thrown up plenty. Now when I do it there is severe pain involved so I will do anything I can to not throw up. It's mind over matter for me - as long as I'm able to concentrate I can stop my stomach from revolting. But that means when I get nauseous I'm having to concentrate on keeping my stomach from turning. It's probably doing more harm than good, but the alternative isn't any better.

As me anything you'd like and if I can't answer I'll try to figure out where to find the answer. I've studied the human body in one way or another for more than half my life (I'm 30) so when I was diagnosed with something I'd never even known was possible, and had doctors who couldn't tell me anything about the condition and had no ideas for treatments besides going to a nutritionist who really couldn't help me, I poured myself into researching it. I've studied up on the digestive system, the nervous system, the endocrine system, what possible treatments out there, etc. (I drive some people crazy because I always want to know things.) I had to change primary care doctors because she had absolutely no clue about what the condition is (if your patient is diagnosed by a specialist with something you don't know about wouldn't you look it up?) and when I tried to tell her she flat out told me I was wrong and walked out of the room. My GI doctors diagnosed it but refused to give me an appointment to explain it - I had to beg and plead to get in with a PA to ask any questions, most of which were answered with 'I don't know' or general statements. But that's also why it can be so important for us to understand it - because many doctors don't!

As I mentioned earlier, I'm heading to Mayo next week for an intial appointment then it's expected I'll spend most of the following week down there for testing (I live about an hour and a half drive from there in MN). I'm glad I live close and I'm really hoping they can help... and won't be put off by how much time and effort I've put into trying to figure it out on my own.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
MOMMAMONKEY04 Posts: 5
10/13/11 7:25 P

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Thanks Sheri!
He has tried doing research on it but only sees the parts he wants to. There was an article on the Mayo Clinic website about experimental treatments and he told me all about them but simple things like the symptoms, he just doesnt get. or believe I guess. he is one of those where if your arm isnt falling off then there is nothing wrong with you.

Im sorry to hear your GP is so bad. Luckily mine doesnt usually include vomiting. I've been doing acupuncture and it has helped my nausea as well as the aches. I saw a nutritionist but she mainly deals with GPers who have trouble keeping the weight on. You have a lot of good info so I hope you dont mind if I pick your brain from time to time. I already know more than my drs about it so I have learned I have to help myself if Im going to get through this.

Thanks again!!

1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
10/13/11 4:41 P

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Too many people think 'if you just do this you'll be fine' - unfortunately it doesn't work that way. I've found that a decent way I can describe how it feels to have GP so other's kinda get it is to say it is like having the flu - and I've felt like I've had the flu for a year straight. For me, I have an aversion to food and can get nauseous from just the smell of many foods, I'm in constant pain with a lot of aches, I'm completely exhausted all the time, I'm fighting to not vomit most days, etc. Once I explain it that way, then they kinda 'get it'.

Since it is your husband, if he's open to learning something about the condition you could do some research about what is going wrong and use that to give him information. It depends on how open he is to learning of course.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
MOMMAMONKEY04 Posts: 5
10/13/11 1:42 P

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Thanks All! I appreciate the info and encouragement. My husband still thinks this will all just go away if I eat right and start exercising. Im so happy to find others who know what im dealing with

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10/12/11 4:23 P

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Welcome to the team; I was diagnosed in December, but prior to that, I had never heard about GP; just another reason why we have to raise awareness about it.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
10/12/11 12:17 P

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Welcome to the team - I'm glad you found us. This condition is so different for each person, but there are others who gain because of it instead of lose. In some cases it is because of a backup of undigested material in the intestines or from a bezoar in the stomach. In others the body realizes it isn't getting the nutrients it needs and thinks it's starving, so it will attempt to store body fat instead of burn it.

Be careful of SP recipes - many of them lower simple carbs and raise fiber, which is the worst thing for us. I know there's a thread in our team about how to adjust recipes and another with GP friendly recipes. I also have some sticky threads for food suggestions. Take a look and see if those will help you. Finding what we can eat is difficult, but with some time and effort you'll have a better idea of what will work for you. If you haven't yet, you might want to try talking to a nutritionist. Sometimes they can help.

I know how you feel about exercise - I need about 2,000 calories a day (sometimes more) to maintain my weight yet I'm constantly exhausted. I can't exercise because I can't afford to lose precious calories and it wears me out way too quickly. That's why getting your nutrition figured out is so important - you need the calories and nutrients to give you energy before you can think about doing much exercise. So in the meantime doing little bits like taking a few extra steps or doing a few pushups and situps can help keep you moving without taking a lot of extra energy.

FYI - I was diagnosed just over a year ago but continue to get worse so I'm heading to Mayo Clinic next week to see what treatments they can offer me. I've been studying the condition since I was diagnosed and have learned a lot, so I'm happy to attempt to answer questions or point you towards an answer for anything you'd like to know.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
GUTHRIESM's Photo GUTHRIESM Posts: 47
10/12/11 9:40 A

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Welcome! I also got diagnosed in August. It is a huge shift. I am fighting the urge to just eat whatever regardless of the consequences. I bet it must be a challenge to care for your child with no energy.

I also have endometriosis so if you need a vent, look my way!

Take care of your health first - exercise needs to be balanced with your ability to get through the day first!

Don't think of organ donations as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

"It's tough to make predictions, especially about the future." ~Yogi Berra


MOMMAMONKEY04 Posts: 5
10/11/11 11:47 P

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Hello,

I was diagnosed with GP back in August after a scope for a stabbing pain in my stomach and excessive weight gain. I have been doing tons of research since then, but have had a hard time finding anyone else with the weight problem that I have. I love to cook and bake and am having a hard time with the fact that I can't eat all the same stuff as before. I am supposed to stick to an applesauce or thinner consistency with my meals. As I look through all the recipes here, I'm trying to figure out how to make them GP friendly. Most of the time, I stick to meal replacement drinks, Bolthouse smoothies or things I shouldn't be eating.

Exercise is an obstacle for me since I'm very tired all the time and have a 4 yr old who drains most of my energy in the evenings. I also have stage 2 endometriosis which makes me even more tired along with the constant cramping.

I'm so happy to find others with GP who can give me real life advice. I already subscribe to G-PACT and Living with Gastroparesis (where I have gotten most of my info) on facebook. I look forward to meeting all of you! emoticon
Amanda

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