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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
3/23/13 2:09 A

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Anything you can find to make it easier on you, the better! If you do get a fun lunchbox, be sure to take a picture and share it with us!

~ 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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JAMIERHF's Photo JAMIERHF SparkPoints: (1,981)
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3/22/13 9:42 P

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Thanks, 1State! I checked out G Pact already - pretty neat stuff. I wish I'd known about it before, lol. :)

Nola, I love that you use a Mickey Mouse lunchbox. I might have to get something snazzy like that - I think it would both help me feel better and help me to remember to eat (since I wouldn't forget about my awesome lunchbox). Good advice!

Thanks for the warm welcome!

=^v^=
Jamie

"Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity."
-Carl G. Jung


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GRNDMOM43's Photo GRNDMOM43 Posts: 47,152
3/21/13 9:05 P

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emoticon emoticon to the team. I have new diagnosed GP and it is considered mild. I am learning to eat fewer things and very small helpings. I take my food in a Micky Mouse thermal lunchbox to work. It is bright and cheerful and helps me to be less depressed about my snacking. Wishing you all the best. Strawberry Applesauce is great. It was something new I tried this week. emoticon

Nola

Kansas~ CST
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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
3/21/13 1:55 A

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Definitely tell your therapist about your medical diagnoses. I have 11 diagnoses (so far) and that has a serious bearing on my mental health. The more they know about you, your life, and your challenges the more they can help you deal with them. When your digestive system isn't working well it means your body won't get all the nutrition it needs the way it wants it, which will affect your mental health. So if you're not progressing as they expect that's a very good reason. (As an ironic twist of events my therapist's daughter has GP so I share information and she understands the frustrations of the condition.) Plus they can spend less time trying to convince you that you have to eat and spend more time on helping you figure out how to de-stress, since stressing out slows the stomach even more.

As you get more and more used to the GP diet, also get used to telling people "I must eat different than you because of my gastroparesis." GP requires us to eat differently (in some cases just a few small changes, in others it means getting alternate nutrition - TPN or enteral feeding) and some people are put off because we must be different. I find that telling people I have a partially paralyzed digestive system which requires me to eat differently can quickly explain and give them a chance to ask questions, thus spreading awareness.

I also have issues with forgetting to eat, and have since I was a teenager - though it got worse over time. Think about it: food causes pain and problems instead of pleasure, so forgetting to eat is a coping mechanism to avoid the pain and problems. I have a rare cause for GP, and I have to lay down after I eat to be able to digest. So if I'm out and about doing things I can't eat until I can get home and lay down. When I was still working I couldn't get down a mix of 1 cup of ensure and 1 cup of water in a 9 hour day of work, and it stayed in my stomach all day. Once I figured out how to deal with all this, I've learned how to eat very small amounts or only simple carbs to keep me going until I can eat a real meal and lay down. When I'm at home I spend almost all my time laying on the couch, so once I start eating after waking up I graze on and off all day. I'm a very unique case though, whereas for most others the structured grazing works really well. It's mostly a matter of finding what works well for you.

I really hope you can get into that vocational rehab program and get set up with some work that makes it easier for you to deal with your medical conditions and still do great work at the same time. Also check into G-PACT and www.advocacyforpatients.org/ who may be able to help with ensuring you get equal consideration for jobs, since companies must provide adequate adjustments for people with medical conditions. Thus, as long as you're doing a good job they should be allowing leeway to handle your medical need to eat frequently.

Glad I could help! If you have more questions or want more information, please let me know. I'm glad to do all I can.

~ 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.
JAMIERHF's Photo JAMIERHF SparkPoints: (1,981)
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3/20/13 11:13 P

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1state, thanks!

You're right - they discovered the diverticulosis first & tried putting me on a high fiber diet. The gastric pain I experienced from the supplements was unbelievable, and I think that's what triggered their suggestion for the gastric emptying study.

My anorexia from my teens had some symptoms of the nervosa variety (fear of becoming fat, missing every other cycle) but not enough for a qualified diagnosis. It was mostly a way of being able to control something in a pretty stressful time in my life. I've always had a distorted body image in the sense that it's hard for me to gauge my size compared to those around me (a few years ago, I gave a guy friend of mine a back rub; he had some pretty bad knots & it was when I felt like I was about to crush him that I realized that he and I were about the same size, ha ha). I suppose I just have plain old anorexia now - that makes a lot more sense. I probably should disclose my gastroparesis diagnosis with my therapist - she was very concerned that I was still having other issues with it. (I don't have any body image issues... As I told another therapist sometime ago, I can understand people having body image issues, since people are funny looking creatures to begin with. :)

Funny you mention not drinking liquids with meals - that's also recommended in Ayurveda (I like to supplement western medicine with holistic, homeopathic, & naturalistic "medicine"). I definitely need to be a little more consistent about it, but there have been a number of folks who commented that they thought it was unusual that I didn't drink with meals.

I really like that idea of "structured grazing". I had considered a grazing style diet, but was concerned that I'd be too capricious about what I eat & either forget to eat (something I do a lot of anyway) or just eat little bits of junk food throughout the day. The snack recommendations are really helpful - I'm a huge sucker for dates and papaya leather. Seems like a couple of protein shakes a day might be helpful, too - I've noticed that my protein percentages have been a little low (Spark keeps "griping" at me about it, ha ha).

Finding existing jobs where I can graze has been very difficult in my current market with my particular skill set (I've had some pretty neat jobs, even fairly high profile, but I don't have a bachelors degree). Right now I'm applying for a local aid program called "Vocational Rehab" that will help me to pay for my medical expenses as well as help me to set up my own business. I'm tired of putting my health in someone else's hands via unrealistic work expectations... So now I'm assuming the liability & choosing how, when, and where I want to work. :)

That is so helpful. Thanks so much!

=^v^=
Jamie

"Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity."
-Carl G. Jung


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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
3/20/13 8:06 P

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Glad you found our team! From what I've heard of diverticulitis, that's supposed to be a higher fiber diet (forgive me if I'm wrong), but GP is a low fiber diet, so add into that your food sensitivities and I'm not surprised that you have disordered eating. I've had disordered eating also, due to severe depression, anxiety, and abuse along with a not well-functioning digestive system since I was a young child. Unfortunately, disordered eating such as anorexia nervosa and bulimia can sometimes cause gastroparesis, so anything you can do to eat as best you can now will at least minimize the chances of your gastroparesis getting worse.

Keep working with your therapist to deal with the mental aspects of your physical issues as well as your doctor for whatever treatments are available for your conditions. Seeing a dietician will also be helpful, as well as making sure you've come up with a list of foods that work for you.

As for how to handle eating 6 meals a day (I've been known to have up to 10) is to redefine what a 'meal' is. A meal for us needs to be small - often a kid's portion at a restaurant is even too big. So a 'meal' is also a snack. If you have a job where you work at a desk and can eat while working that's ideal, otherwise you need to ensure you can take breaks. Eat a small breakfast, have a snack, eat a small lunch, have a snack, eat a small-medium dinner, eat a small dessert/snack. That's 6 meals. If you have 300 calories per meal and 200 calories per snack, that's 1500 calories in a day. If you find yourself too full to eat your snacks, then eat less at your meals. This is a structured form of 'grazing' and not only will it help keep your blood sugar more stable, but it will allow your digestive system to keep processing slowly all day instead of working so hard after each meal and trying to rest right before it gets stuffed full again. Unfortunately, eating like this seems unnatural because you'll never feel totally full, but that's a good thing considering the early satiety.

Another good tip is to relearn how to drink liquids. Most people drink water/milk/soda/liquids while eating, but we should NOT. Instead, drink your daily water and other liquids between meals and stop drinking for 30 minutes before eating solid food. Only sip water while eating to help you swallow, then after you've finished eating you can go back to drinking. If you drink while eating the food and water mixes and you get fuller faster and takes longer to digest.

To carry around your snacks, look for foods that don't need to be kept cold or cooked well. This is a good idea anyways, as we should not be eating or drinking cold food whenever possible. Just like putting ice on a bruise, cold food will numb the nerves and slow the blood flow, which makes GP worse. If you can handle some granola bars (remember low fat and low fiber), some breakfast on-the-go, or dry cereal can be easy to carry. Fruit leather is also often a good thing to try and doesn't need to be kept cold. Single serving containers of applesauce don't have to be kept cold. When you have some time to spare, just wander around your local grocery store to help give you ideas.

For remembering, it is a process to learn how to eat so often during the day, especially when many others around you aren't eating. You could set an alarm to remind you. If you have certain tasks you must do during the day then you can tie in eating to those tasks. As I said earlier, you could plan to have a snack when you have breaks at work, or if you work at a desk you can put your snacks out on your desk each morning so you see them during the day and remember to take them. If you listen to the radio then whenever a certain show comes on that could be your reminder. Anything you do at the same time every day can be a reminder for you to eat. Or, if nothing else, just get yourself into a habit of looking at the clock more often.

I hope this gives you a few ideas to work with. Please let me know if there's more I can do for you.

One last thing, it's not a big deal but it's something to remember. Anorexia is the act of not eating, while anorexia nervosa is the mental health disorder that leads to no eating. Your medical records will have anorexia written in them in conjunction with the gastroparesis, as a symptom is not wanting to eat or not being able to eat. I had anorexia nervosa as a teenager as well, but part of it did stem from the severe stress I was under causing my body to reject all want for food, which became a mental health disorder when I decided I would just stop eating because I was 'better' that way. My doctors refused to believe I had an eating disorder and it took 29 years of suffering with mild GP symptoms and months of having no ability to eat before they diagnosed the GP. When I see 'anorexia' in my medical files I freak for a moment thinking they don't believe me again, but I remind myself that it is the symptom of GP.

~ 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.
JAMIERHF's Photo JAMIERHF SparkPoints: (1,981)
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3/20/13 6:14 P

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Hey folks,
I'm in my early 30s & was diagnosed with GP back in 2008, along with diverticulosis (first diverticulitis at age 31), & GERD. Although it's next to impossible to tell, I suspect this came on as a result of the combination of OCD & generalized anxiety along with some borderline disordered eating (borderline anorexia never addressed in teens & dealing with it now).

I'm working with a therapist and my doctor (and may need to call on a dietitian as well) right now. I made an agreement with my therapist to take in at least 1500 calories everyday last week (and have been exceeding the goal each day since then). I'm finding that now that I'm eating more that I'm having problems again with early satiety - no nausea or vomiting, just bloating and discomfort and not wanting to eat another bite.

They had recommended that I eat 4 to 6 small meals per day when I was originally diagnosed... I thought that sounded like a good idea, but I've never figured out how to manage that - it sounds like "one more pain in the butt" when it comes to eating. (I have sensitivities to egg, gluten, msg, and am lactose intolerant... meal planning is an absolute nightmare when I go out to new restaurants.)

Maybe this question sounds strange, but can anyone help me figure out the logistics of eating more than 3 meals per day? (Planning, carrying, remembering, etc.)

=^v^=
Jamie

"Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity."
-Carl G. Jung


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