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8/29/11 7:06 P

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By the way, for anyone who hasn't already seen, Shari (Mom2acat) lost her father this weekend. He was great to her, was always very helpful with things around her home, and was a great supporter for her. (Shari, I hope I portrayed him accurately with these short statements. I know we've talked about our fathers in the past and you said he was always willing to help you out.) I know he will be greatly missed in many ways, so please show your support for our friend. She has said she is not ready to share what happened, but maybe someday soon.

Love to you, Shari, and your family. We are here to support you.

~ Sheri ~

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


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8/28/11 2:23 P

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Lynda I sure hope they figure out why you keep passing out. Stress just doesn't sound right. Your both in my thoughts and prayers

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8/28/11 12:27 A

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It's been years since I've studied seizures, but petit mal seizures don't normally include passing out. I had petit mal seizures all the time when I was a kid and they included 'stare offs' but I never once passed out from them. I overcame them when I learned to control them by allowing them to happen for a minute or two then breaking them. Now it's incredibly rare for me to have one. In contrast, I do pass out now and again, but it is when I tilt my head backwards and it cuts off the nerves and blood flow to my head. Yes, I need to see a neurologist for this and for the massive headaches that can get so bad I lose the ability to walk, but for some odd reason I keep putting it off.

Have you had your blood tested for oxygenation and carbon dioxide levels? I know when my GP was the worst due to pressure on my vagus nerve I had problems breathing and my heartbeat was totally out of whack. The pressure was preventing my brain from getting the information to not only my intestines and stomach but eventually also to my heart and lungs. Once I got more sleep, got a massage, reduced my stress, and did everything I could to release the muscles in my neck, shoulders, and back that were putting pressure on the nerve I didn't have any more problems with my heart and lungs. So now when I have a GP/CIP flare I do everything I can within a few days to clear it up before it gets that bad.

Stress does crazy things to our body, but contrary to the belief of some doctors who only follow algorithms and statistics, stress doesn't magically create random problems in our body with no explanation. Pretty much every symptom you get from 'stress' is caused by an actual physical issue. Stomach aches can be from us clenching our stomach all the time due to pain. Headaches and neck aches can come from us curling our shoulders up from cramping muscles, which affects blood flow and the nerves in our neck. I can go on and on, but you get the point.

You might want to discount what I'm saying and there's nothing I will be able to do to change your mind. But I suggest you going to several doctors before subscribing to the idea that stress is causing your problems and there's nothing that can be done. Doctors are human and make errors, have their own opinions, and believe in different treatments. If a doctor will not help you because it is 'just stress' then you probably should find another doctor.

For your informational reading, I suggest the book "How Doctors Think" by Jerome Groopman, MD. He's a doctor who's hand suddenly started hurting and just kept getting worse. He went from doctor to doctor and was given numerous diagnoses - including one that was completely made up - and had several courses of treatment recommended. He learned first-hand how important it is for patients to take their health into their own hands and not just do anything a doctor says. He also explains how so many doctors make so many mistakes and gives examples of some severe cases and what went wrong in the doctor's thinking to cause the error. It showed me why 2 different hospital radiologists missed the fact that half my face was severely infected from a tooth filling failing but the dentist immediately caught it and realized it was one of the worst he'd ever seen. It was penicillin resistant and if the radiologists had found the infection it wouldn't have been 4 months before the infection was finally gone.

Doctors are just like most people - they make mistakes, they're prejudiced, they take short cuts, and on a bad day they might just give up and not care what happens. Sure, that isn't right whatsoever, but I've seen it and been through it.

~ Sheri ~

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


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8/27/11 7:44 P

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Hi Team! I am praying that any of our friends and family that live on the east coast will be safe from Irene. "Lord, please protect any and all of them from the fury of Irene. "

Today has been another interesting day. While taking a shower this morning, I passed out. The Lord protected me and allowed me to fall backward instead of forward. The only damage I did was to hit my back on the ridge of the tub instead of hitting my face on the faucets, and even possibly drowning. I passed out again at the hospital while I was visiting Vince. Dorene talked to me all the way as I drove home (I use a blue-tooth). If I were to have stopped talking she was going to dial 911. I kept her posted on my location with each mile marker, etc., etc., etc. It made me feel so much more confident. The doctor keeps saying that it is stress and dehydration. When I got home, I got to thinking and I have reached a different conclusion which I will discuss with my neurologist on Monday. I think I'm having petit mal seizures. I have a seizure disorder anyhow. She gave me medication to help alleviate the stress several months ago which I haven't been able to take because it makes me sleep too soundly and that makes Vince angry because then I can't hear him when he calls me. She was worried about me having seizures. I know that I'm rambling -- sorry.

Vince wasn't doing well today. His blood pressure was only 50/31 so they were going to transfer him to the medical section of the hospital. Instead, they started him on IV fluids which raised his pressure significantly. When I left him it was 92/55. Please continue to pray for him.

I know that it seems like we are falling apart. Sometimes it feels like that to me, too. But we're not because I know that we can "do all things through Christ who strengthens me." (Phil.4:13) I know that you have been praying for us and that helps more than you will ever know. Thank you so very much.

I love you all bunches,
Lynda

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8/27/11 12:22 P

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emoticon Dorene

The Best You Can Be At Any
Given Moment Is Yourself
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8/26/11 11:07 P

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HI TEAM;
WELL NOW THAT LYNDA IS BACK I WILL BE LEAVING I WILL RETURN IF SHE NEEDS ME TO KEEP YOU UPDATED
WAS NICE MEETING YOU
TILL THEN
TAKE CARE CAUSE I CARE
DORENE


using my caps for visully impaired friend
I AM DORENE FROM
COWLEY ALBERTA CANADA
FOOTHILLS OF THE ROCKIES SOUTHREN ALBERTA
I LOVE TO KICK BUTT


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8/25/11 11:45 A

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Lynda my prayers are with you and your family. May your Dad get better real soon.
emoticon emoticon ......Sandra

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8/25/11 8:35 A

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I don't have time to go into all the details now, but my dad is in the hospital; my mom called 911 yesterday morning after he fell when getting up to use the bathroom and she could not get him up. He was very dehydrated. As of last night, his kidneys were failing; they are trying to reverse that, by pumping him full of fluids, but they also have to be careful not overdo on the fluids and cause heat failure. He is in serious condition, but we are trying to remain hopeful. If the kidneys are not any better this morning, he may have to be sent to a bigger hospital for dialysis.

I don't have any news yet this morning, but I will be leaving to go back up to the hospital soon. I will have my cell phone with me but I do not have internet on it, so I won't be able to give any updates until I am back home, and it probably won't be til this evening.


Lynda ((((HUGS))) Take care of yourself!


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.

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8/25/11 6:23 A

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I really appreciate and love Dorene for keeping you all posted. However, I literally stayed up all night until I just got my husband router and modum rewired so that they work. The worst part was accessing the wires which were behind a 2 drawer file cabinet under the desk (on carper) which I had to move. That really hurt my shoulder. However, I was successful just a few minutes ago.

I got out of the hospital on Wednesday, but have passed out everyday since then. They say it is stress, which I don't doubt. At least now I know the warning signs so I can get somewhere safe.

I wrote a short blog which will bring you up to date on Vince called, "I'm Back! Add Computer Tech to My Resume!"

I finally got my domperidone this week. I can't see too much difference yet since I'm on a liquid diet. I'm hoping that when I see him early next month he'll advance my diet some since I have the medicine. We'll see.

I'll write more later, but right now, it is time to go to the gym for my 5K walk.

Love you all bunches,
Lynda

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8/24/11 10:04 P

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Thank you for joining to keep us updated.

She did get out of the hospital as planned, correct? Perhaps she can try calling Geek Squad or something to get it fixed.

~ Sheri ~

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


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8/24/11 7:42 P

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HELLO;
I HAVE JOINED TO KEEP YOU UPDATED ON READING DOC
LYNDA,
SHE SAYS SHE LOVES YO BUNCHES
HER COMPUTER CRATERED AND VINCE (WHO WORKS ON THEM IS IN REHAB 7 TO 10 DAYS SO AS I TALK TO HER EVERY DAY BY PHONE I WILL KEEP YOU UPDATED TILL SHE CAN RESUME HER POSTS ANY QUESTIONS YOU MAY HAVE JUST HOLLOR AND I WILL DO MY BEST TO ANSWER THEM
TAKE CARE CAUSE I CARE
DORENE



using my caps for visully impaired friend
I AM DORENE FROM
COWLEY ALBERTA CANADA
FOOTHILLS OF THE ROCKIES SOUTHREN ALBERTA
I LOVE TO KICK BUTT


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8/16/11 4:34 P

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I'm so sorry your having to go through all of this. Being sick on top of having a bunch of stress is so difficult. I feel for you....I'll pray for you and your husband. Do be sure to tell the doctors everything all of your illnesses and the stress your under. Stress can cause all kinds of problems. Stress has put me in the hospital many times, it likes to play havoc on your body. Take it easy and get as much rest as you can. emoticon emoticon ...Sandra

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8/16/11 2:33 P

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Make sure they know that you have Gastroparesis!

Gastroparesis is caused by vagus nerve damage. The vagus nerve also controls the heart and lungs so if the damage has spread father up the nerve it *might* (emphasize MIGHT) be affecting your heart and lungs. I don't want to scare you, but many doctors don't know about or understand GP so it is important you mention GP to them in the small chance that it is related.

I'm so sorry to hear that all this is happening. I really hoped things would start getting better. Hopefully you've got some great doctors who will be able to work their magic and get you back on your feet in a few days.
emoticon

~ 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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8/16/11 4:49 A

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I have now joined Vince as a patient at the hospital. Since Friday I have passed out at least. Once a day since Friday. Today I passed out 3 times, once in the hallway outside my husband's room. They called a code yellow and by the time I came to there were 14people standing around me. That earned me an automatic trip to the ER. While there I passed out again and when I fell I reinjured my bad shoulder. They did an EKG which I flunked so they admitted me. They feel the problem causing the fainting is cardiac. I think it is just plain old fshioned stress.


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8/15/11 4:49 P

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Lynda, I am so sorry! I am keeping you both in my prayers. emoticon


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.

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8/15/11 4:09 P

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I'm so sorry your having to go through this. Hopefully the hospital will be able to help him out.

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8/15/11 2:31 P

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I'm sorry to hear that. The sad thing is that maybe they noticed, but in a place like that they're not allowed to force patients to do or not do anything - unless it is to protect someone from being hurt or killed. Even then, they sometimes come up short. They couldn't force your husband to eat and they can't have him hooked up to an IV in a psychiatric ward. My assumption would be they gave him a few days to see if he would give in and when he didn't they realized he had to be sent elsewhere.

I'm not attempting to defend them. I've seen situations like this from both sides, and neither side is a place that anyone wants to be in. Hopefully the new hospital will be able to treat both his mental and physical health.

~ 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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8/14/11 11:33 P

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Vince was transferred by ambulance this afternoon from the psychiatric hospital to a medical hospital in critical condition. His kidneys are shutting down. He did not eat or drink for the 4 days he was at the psychiatric hospital AND NO ONE NOTICED! I'm furious. He wants to die and they were just letting him. I'll keep you posted when I can.

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8/14/11 9:39 P

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I don't know about everyone else, but sometimes I have to be reminded that I'm as important as everyone else and sometimes I have to put myself first.

I hope you find your way through this difficult time and things get a better soon.

~ 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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8/13/11 10:25 P

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Thanks. I don't know what else to say but thanks.

Lynda


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8/13/11 10:01 P

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For people who have a conscience and can feel empathy, it's natural to feel guilty for not doing what is asked of us. But, like you said, you can't do it right now. He is getting the help he needs, whether he believes it or not, and now you need to do things for you.

A few years back I was flipping channels and came across Suze Orman doing a seminar for women. Of everything she said, one thing stood out to me "stop selling yourself". As women, especially women who have a lot of empathy, we tend to sell ourselves by giving in and doing what's best for others, no matter what it costs to us. She was speaking about money - women who own a small business will sometimes accept a trade instead of payment, but get something they totally don't want, because they are afraid the other person will hate them for not accepting it. This does work in other ways too. How often has a mother taken care of an entire sick family then as soon as they're better, she falls ill and takes care of herself instead of asking a family member to help her? How many times do we set aside our good for someone else, telling ourselves that they are more important or if we don't do it then something bad will happen and then it is our fault for not helping?

I bring this up to remind you of this: if you get sick, if you get hurt, if (God forbid) you were to die, what would happen to your husband? Someone would step in and help him. So as much as you want to help him, he is getting help from someone else and now you must do the same for yourself. As you start feeling better and start turning your health onto a better path, then you can go back to doing more for him. In the meantime, visit him, let him know you care, take care of the house, but don't attempt to do everything for him - that's what the hospital staff is for. They're getting paid to help him, don't also sell your own health to help him. When you feel guilty, remind yourself - when the doctors and nurses go home at the end of the day, do they feel guilty because they left your husband there? Of course not; they know another person is taking care of them. So why should you feel guilty about allowing someone else to help him and help you? If your husband were to start blaming you for him being there, remind yourself that right at that moment he is not in a good frame of mind and is only looking out for his wants. Which means you shouldn't feel guilty for not doing what he wants, but instead should be proud of your strength to give him what he needs - to stay in the hospital. Everything can change in a few days or weeks, but right now you have done everything you can for him - you do not need to feel guilty for any of this.

Edited by: 1STATEOFDENIAL at: 8/13/2011 (22:02)
~ 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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8/13/11 12:13 A

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Thanks for your suggestions. I know that the stress is really hurting me. While I was at phhysical therapy (for an injured shoulder) this afternoon, I passed out. They kept checking my blood pressure and it was sky high. My husband called tonight and said that he couldn't stand the hospital and he was going to come home. I told him he couldn't. That has made me feel so guilty, but I am not equipped to detox a person who also suffers from severe depression. No wonder the bp is up.

By the way, I do add protein powder to my shakes that are fairly low in fiber. I have three flavors -- chocolate, banana, and strawberry. Sometimes I add Ensure to the shakes.

By the way, are any of you on domperidone for the vomiting? As it stands now, I will nbe going on it early next month. I was just wondering what to expect.

Thanks for everything, team.

Lynda


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8/12/11 10:03 P

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Your situation definitely doesn't seem good, and I'm sorry to hear it. Of course, just having GP is hard enough, but adding in everything else only makes it worse.

I would suggest contacting your doctor and asking for help. If you keep losing weight they might have to admit you for a few days to help you - it doesn't seem like a good idea when you want to be with your husband, but if it helps you, then it is probably worth it. Otherwise, you could also try getting a massage or setting aside a half hour to do something for yourself to relax - letting everything else go for the moment. Stress only makes it worse, so counter-acting the stress can help.

You might also want to start asking for help from family, friends, organizations, or charities in your area. See who is willing to help with little things around the house or cooking for you, anything to take a little stress off. If you have a place of worship there are probably a lot of people there who would be willing to help you. As for your and your husband's health problems, you do what you can to help yourself and let the doctors help your husband right now. He's been admitted, so he is getting help - you're going to worry (no one would think you wouldn't) but you can take a breath and remove yourself for a little time (go for a walk, sit in a park and watch the birds, read a book, etc) each day to help yourself.

~ Sheri ~

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


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8/12/11 8:23 P

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Reading Doc I'm so sorry your going through this. My only advice is maybe you can get some counselling to help you cope. Try to find a support group. emoticon

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8/12/11 5:34 P

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emoticon I am so sorry! I know stress definately makes my GP worse. I have learned during those times the best thing that works for me is to stick to a blander than usual diet.

Maybe you could try adding some protein powder to your drinks? Just make sure you read the labels, some of those have too much fiber in them.


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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8/11/11 7:02 P

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I have been under a great deal of stress lately. My DH has incurable cancer, has been in the hospital 9 out of the past 13 weeks (I stay with him), was admitted to a psychiatric hospital yesterday for suicidal and homicial ideations as well as detoxifical, to say nothing of my own health concerns. I am sure this does not help the gp at all. I have dropped 6 1/2 pounds in just the past 3 days. The doctors don't want me to lose any more weight because I am now officially 27 pounds underweight. How can I avoid it with my diet and my stress? HELP!

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8/11/11 3:11 P

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I've never tried actual appetite suppresants, but I did try things like crystal light mixes and they didn't work well. The problem is that either someone fills up to stop hunger and risk staying full for a long time, or figure a way around it. Messing with medications (chemicals) could just make things worse. I would honestly suggest drinking more liquids and finding ways to occupy your mind to not think about it. Or asking your doctor about ways of dealing with your hunger - they might have something that might help.

With me eating so often during the day and still getting in water between meals (not during), I don't have much time to be hungry! If I do, I adjust what I'm eating and either have a little more fat or fiber to keep me fuller longer or add in an extra small snack to tide me over until the next meal.

~ Sheri ~

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urnal_individual.asp?blog_id=5444844


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8/10/11 6:57 P

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Lynda I'm happy that you found something to help you out. I've never tried the appetite suppressants so I can't help you there.

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8/10/11 8:05 A

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I live in central Arkansas and I have been to numerous doctors. It was my oncologist who originally diagnosed me and did the gastric emptying scan 2 1/2 years ago. Since then I have been to 3 GI docs, none of whom really understood gp. It wasn't until my husband was in the hospital recently that I found this wonderful GI doc.

Yesterday I bought 3 flavors of gluten free protein powders that are chock full of nutrients. I made a protein shake last night with the powder, milk, and ice cream. It was the first time in weeks that I wasn't hungry.

Thanks for all of your wonderful suggestions. I have one more question. Have any of you ever had an apetite suppressant to help curb the hunger pains? If so, what are the side affects?

I hope that you all have a blessed day.

Lynda

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Some people have been going to motility clinics and the doctors there have been quite good. The Mayo Clinic is about an hour and a half drive from me, but I'm saving that as a last resort. There are only a few motility clinics in the US, but if you can find one near you that might be another opportunity for you. Also, the GI clinic I went to had postings about numerous studies for people with GP and diabetes - I would believe there would be some studies near you. They won't help me much since I have hypoglycemia.

~ Sheri ~

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I love the LOL cats!


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.

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When we lived in AR I had that problem, doctors who just didn't care. Their answer to everything was to lose weight. All my stomach trubles were because I was fat. It was so aggrivating because I knew it was something else. My husband was in the military at the time and I have to tell you it was a real hit and miss with doctors. You never get to see the same doctor in a row so they never made any correct diagnosis. When my husband retired we moved to GA and that was when I first saw a good GI doctor. He listened to me and really searched for the right answers. The only problem I had was after the diagnosis he let me go and I had no answers as to how to deal with the problems. When we moved here I really lucked out and found a good GI doctor that has helped me out with a diet. My family doctor sent me to a nutritionist who looked up my illnesses and worked out a diet plan for me. It was great until my GI doctor found another problem and a different diet I need to follow. Now I need to find out how to get the two diets to work together. BUT I think your right when you said to try one thing at a time. I think that's the only way I'm going to solve this dilema. Having stomach problems is a real pain, Being diabetic I know I have to eat but most of the time I don't want to. Yet I'm still overweight. The doctor told me it was because my body went into starvation mode and holds onto everything I put into my body. At least now the doctors aren't blaming everything on my being overweight, they encourage me to lose but they're at least looking into the problems.
By the way as for the cat joke I enjoyed it. LOL

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8/9/11 2:55 P

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Even LOLcatz get some exercising in... well, in their own way.

icanhascheezburger.files.wordpress.c
om
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Not sure how to attach the picture, but here's a link directly to it.

~ Sheri ~

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I had several GI doctors all at once, but more turned out to be worthless than worthwhile. I found a specialty clinic nearby and was bounced through a few doctors and never was told who I could ask questions to (and they never stayed in the room long enough to hear my questions). A month after I went there (while not eating) they finally did a colonoscopy and endoscopy and bravo (the GERD ph monitor), and that's how they found the first 4 diagnoses. Unfortunately, when none of them would tell me what the diagnoses meant or what to do about them, I was left high and dry. Finally I convinced the hospital to admit me and put me on an IV to get fluids in me, and they tried to kick me out a day later when I still couldn't eat! Luckily a PA from the specialty clinic does a few hours of rounds at that hospital and my father begged him to not send me home until I could eat again. That gave me a few more days of fluids and a few more tests (swallow studies, having the bravo removed, seeing an ENT, etc). So when the diagnosis came in right after I got out of the hospital (this was all happening at once) I called and begged someone at the clinic to let me see that PA again. He finally answered a bunch of questions and told me to see a nutritionist.

But now the GI doctors think they're done with me, as they handed down 4 different diagnoses and say they don't have any more tests they can do. Now I've got the Endo that I'm trying to nudge into digging deeper. I finally need to get into a Neurologist. After that, I don't know where else to go. But, at least now I have 7 diagnoses as proof that this isn't in my head, so it is just a matter of finding a doctor who cares.

You should check out the book "How Doctors Think" by Jerome Groopman. It's a very interesting book if you have ever dealt with doctors who don't listen. I'm now working on the book "Every Patient Tells A Story" by Lisa Sanders, which looks to be the same type of book - explaining how easy it is for doctors to make mistakes and how patients can help them avoid mistakes.

~ Sheri ~

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


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I for one thank you for sharing your knowledge with us. Learning from others who are suffering with the same problems helps me out greatly. I'm sorry you have had so much trouble with your doctors. I didn't see that you have seen a GI doctor, have you? It was a GI doctor that discovered my problems. It was an endoscopy and colonoscopy that showed all my problems. My blood work didn't really show anything. When they did the c-scan it only showed a underdeveloped pancreas. It took years though to get all the diagnosis. We moved around a lot and I saw many different doctors too but it was always the GI doctors that were able to diagnos the problems. I think a big problem with seeing regular Family doctors is they don't know all the in's and out's of the digestive system. Seeing a specialist in the field has always helped me out.
Sandra

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BTW, I want to add that if I appear a know-it-all to anyone, I apologize. I do my best to help by sharing the knowledge I have, but it could appear like I'm trying to tell everyone what to do. So if anything I say doesn't make sense for you, feel free to not take the advice.

Here's my story for all the new members: I was diagnosed in September 2010 (11 months ago) though I've had mild symptoms of GP since I was an infant with severe colic and didn't eat like a 'normal' baby. It wasn't until I lost the ability to eat more than 400 calories every 2-3 days for a month and lost 15 lbs before I found someone to take me serious. It appears that after a massive bacterial infection in my cheekbone (due to a failed filling that took 4 months to find and fix), 2 car accidents 2 weeks apart which jerked my neck badly, attempting a new high fiber 'healthy' diet, and massive amounts of stress my GP went from eating slow and not eating when I was stressed to not being able to swallow or speak for days after just 1/2 cup of food. When I was given 4 diganoses but they couldn't tell me hardly anything about the conditions, I decided to figure it out myself and started researching GP. Not only was I given Gastroparesis, but also Eosinophilic Esophagitis (I posted about this earlier - it's what prevented me from speaking after eating), GERD, and Illeitis (which should be healed by now). I went to 2 different nutritionists who couldn't do as much for me as they thought - they told me what not to eat and 5-10 things I could eat, but they don't understand MY GP - I had to figure it out on my own. Just as I thought I had my diet figured out, I started having to eat 3,000 cals/day just to not lose weight when I was just a few pounds above underweight. I went back to the GI and to pacify me he ran a metabolism panel, which showed 2 hours after eating an apple my blood glucose was 36 - which is extremely dangerous because I had just driven to the clinic. I got an Endocrinologist and in April he found a severe vitamin D deficiency and type 2 diabetes, but he reversed the diagnosis when I tested my blood sugar randomly during the day for 2 weeks and proved reactive hypoglycemia instead (I requested to start testing before he diagnosed me because I knew 1 glucose tolerance test wasn't going to tell the story). He has absolutely no clue about how I have both high and low blood sugar on different days, so he said he would talk to other doctors and see me again in September. In the meantime, he sent me all the blood tests he ran and I looked them over well, researching the strange numbers he never even commented on (high iron, extremely high iron binding capacity, low carbon dioxide, but normal red blood cell count). I emailed him a few days ago about it and haven't heard back. I'm hoping this will explain other symptoms that haven't been included by these 7 diagnoses. I still need to see a neurologist (not sure why I'm putting it off, I've had headaches every day of my life as long as I can remember).

After all this, I'm no longer relying on ANY doctor to figure out what's going on. I'm not going to diagnose myself, but I am going to learn about my diagnoses and find doctors who are willing to learn from me and work with me to keep figuring this out. I've studied the human body in one way or another since I was in my early teens, and spent my first 2 years of college majoring in Human Biology and Biology with a minor in Human Development. I've also spent countless hours since this started a year ago researching the digestive system, the nervous system, nutrition, blood components and blood tests, and anything else I can think of that might be a part of this. I've also found I'm having to explain my diagnoses to most doctors I've seen, because they have either never heard of a diagnosis or they know little about it. I even had my ex-primary care doctor tell me 'if you have vagus nerve damage you instantly drop down dead' - thus an estimated 8 million Americans are living contrary to her belief (GP is because of vagus nerve damage) - needless to say, you can see why I got a new primary doctor.

So that's my story, and I hope you understand why I do my best to help - I went years being ignored by doctors and after being diagnosed too many still just want to throw pills at me to shut me up and I will not let them overdose me again. If those of us who understand the consequences of GP talk and share our stories, successes, knowlege, and problems, it helps us all in the long haul.

~ Sheri ~

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


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Welcome back ReadingDoc - I don't think you were here when I started, but good to have you back anyways.

GP is such a hard condition, as so few doctors have any idea about it. It's good that you seem to have found someone who does. Hopefully you can avoid TPN, but if that's what you need to survive, then it's better than nothing. Have they considered a gastric pacemaker for you? I've been hearing there is some success with it.

As for liquids, ensure, glucerna, and smoothies seem to help many people. Watch the fat and fiber content though. Shari (Mom2aCat) has also mentioned that using baby food (or any pureed food you like) has helped her through rough days. It's not exactly liquid, but it is easy to swallow so you will have to decide if you want to try it or not.

Have you checked out www.g-pact.org ? They're on facebook and includes many people at all levels of digestive ability, so it might help you to check them out as well.

~ Sheri ~

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


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1STATEOFDENIAL Thank You so much for the advice. i was in a state of shock trying to follow the diets for GP and for all my other problems. Your right they do contradict each other and if I followed each one I wouldn't eat anything at all. Your idea of trying one thing at a time is perfect for me.
Lynda I'm new to this site and so far it's been great. I hope someone can help you with your questions. I'm on Nexium,Zofran,Amitiza, stool softners, carafate, Creon,Reglan all for my stomach. My GP is not as serious as your's, I have times when I can't eat but it's not permenent. I hope someone on here can help you out. Best Wishes........Sandra

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Hi team. I was a member earlier, but for personal reasons, dropped out. Now, I really can use your support and guidance.

I don't think I truly understood the gravity of gastroparesis and just what effect it was having on my body. I had a gastric emptying scan and my numbers were 24/76 which puts me at the severe range. I have just recently changed to a gastroenterologist who really seems to have a grasp of the disorder. He has changed my meds completely. I am now on Nexium twice a day, Phenergan after each meal, Zofran ODT 1/2 before each meal, Amitiza for chronic constipation, Hyomax-FT for gastric spasm, and domperidon. I am on a completely liquid diet and he is in the process of deciding whether or not to insert a feeding tube. As with most gp patients I also have GERD and type 2 diabetes. Other than that I am doing fine. NOT!!! I'm hungry! Any suggestions as to filling liquids would be greatly appreciated. Thanks.

Lynda



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I think everyone is handed the lists when diagnosed. I got 3 or 4 different lists, and they mostly don't agree with each other. The problem is that it is just a guideline and it is nowhere near concrete. Some people can handle carrots, I can't. I can handle roma tomatoes, some can't. But then my diet is completely dependent on the way I feel when I eat. Others can't eat whatsoever (and are put on tube feeding). So those lists are only as good as a jumping off point, but your body will accept some things they tell you not to eat, and vice versa.

They also say less than 10g of fiber a day - some people can have less, some can have more. There is no limit for fat because they know every person handles fat totally differently, so some will have problems at 10g while others can hit 100g without problems. That's why I say it is easier to find out what YOU can handle - because they can give you a guideline but they can't guarantee it will do you any good.

Did you also know for GERD you should avoid anything mint (spearmint, peppermint, etc) whenever possible (obviously you have to brush your teeth and it is hard to find toothpaste that isn't 'minty fresh')? Chocolate, alcohol, caffeine, all coffee, any tea that isn't herbal, pepper and spices, cocoa, nuts and nut butters (peanut butter, almond butter, etc), and most fruits and veggies should all be avoided as well. Basically if you follow the full GP and GERD diets, you shouldn't be eating anything you can taste or chew. Thus if you follow everything they say not to have, you will probably have an anxiety attack before you figure out what you CAN have. I definitely did - I refused to eat until someone told me what I COULD eat, and even then I freaked out every time I had to think about putting something in my mouth. I don't wish that on anyone, especially not someone who was just diagnosed with a condition that is so disruptive to a person's life. It is easier to hear 'start with this and move forward' than to hear 'no, don't, can't, shouldn't...'

Skipping meals is terrible for the blood sugar and for GP - if you skip lunch you can't eat a bigger dinner like some people can. So even if you eat just a small snack, have something. I've found if I miss a meal then I'm more hungry when I do eat which leads to me overeating and I end up with major abdominal pain.

~ Sheri ~

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urnal_individual.asp?blog_id=5444844


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8/6/11 7:27 P

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Thank you so much for the advice. I will give it a try. I too have to be careful, I'm Diabetic type 2 but my sugar has a tendacy to drop too low because I skip meals. I'm trying really hard not to do that anymore. I can't tolerate anything with too much milk in it so I don't know about the ensure but some of the other things sound possible. I know onions are a big no-no and anything spicy or too fatty. Now the doctor gave me a long list of foods I'm to avoid and another list of what I'm allowed. It makes grocery shopping loads of fun.

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8/6/11 4:59 P

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My GP caused massive GERD and has caused Eosinophilic Esophagitis. EE is white blood cells line my esophagus and prevent it from working. I've found that when I eat incorrectly or when my body isn't accepting food it backs up into my esophagus and brings on the EE, which then takes 6-8 weeks of treatment to clear up. Plus when they tested me for GERD I ended up ulcerating (rupturing) my esophagus and they had to remove the capsule as soon as it stopped the readings. So I totally understand the esopahgus problems. Little sips of water while eating can help you swallow, but large gulps will cause you to fill up quickly. It takes a little getting used to, but you will.

You don't have to eat 6-10x/day like I do, some people do less. The point is to eat more often, but less each time. For instance, on a weekday when I'm working, I eat breakfast at 6:30, morning snack during first break about 10:00, have my lunch around 12:30, have the first half of a snack about 3:00, have the second half when I get home about 4:30, have dinner about 6:30, sometimes the 2nd half of dinner about 8:00, and have dessert about 10:00. Sometimes I miss one meal or don't feel I need it, but sometimes I will have to break up meals into 2 installments, depending on how I feel. The worse I'm doing the more often I eat smaller meals. If I'm doing better then I eat a few less meals but have a little more fat and/or fiber to keep me fuller longer. I also have to eat more often because I also have reactive hypoglycemia and type 2 diabetes, which are exact opposite conditions - but when I have lots of simple carbs my blood sugar spikes while eating normal food causes it to plummet quickly and too low. So I also have to pay attention to that as well. This is why it is so important to learn what your body likes and doesn't like, so you know how to adjust what you eat and do to make the best of it.

A few foods to start out with would be things like ensure and other liquid drinks (watch the fat and fiber content), malt-o-meal or cream of wheat, non-fat yogurt (avoid any that have added fiber and be cautious of the added probiotics until you get your base of food set in case you have problems from them), and thin water-based soups or low-fat cream soups. Eventually you will probably not go back to these often, but as you add a food at a time, if you have problems you know what food caused it, instead of guessing from a long list.

As you find foods that agree with you, feel free to share your progress with us. If you find a food you can tolerate we may be able to suggest similiar foods to also try.

~ Sheri ~

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urnal_individual.asp?blog_id=5444844


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1Stateofdenial thanks for the advice I'll try it. I didn't know about the liquids, not to drink while eating. I usually drink a lot because I have trouble swallowing, but the GI doctor just stretched my esophagus in June. It's helped out with my eating. I was getting sick every morning now I don't. How long it'll last is a big question mark but it's helped me out for now. Now I have to admit eating 6-10 times a day is going to be difficult for me I'm just not that hungry. I have trouble getting food down 5 times a day. I have made my meals smaller, in hopes it helps.
I'll try your advice about eating just a little bit and one thing at a time to see what I can tolerate. I thought I knew what to avoid but eating one thing at a time might show me there's more things I need to avoid. Thanks.

MOM2ACAT Thanks for the welcome. I look forward to getting to know you...........Sandra

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Welcome to the team Sandra!


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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My best advice: start with a very easy to digest diet (low/no fat, low/no fiber, easy to swallow) and slowly add one food at a time. This will help you figure out what your body will accept and what it doesn't like. Eat more often during the day (I eat 6-10x/day) with small meals, even just some fruit snacks or a granola bar if you can find one you can have. Don't drink liquids while you're eating. Drink before eating or a half hour after finishing (other than sips to help swallow your food) otherwise you end up filling your stomach with liquid instead of food and slowing your digestion further. If you have pain after one meal, try drinking something like ensure for your next meal/snack to prevent any more backup while still attempting to get nutrients and keeping your blood sugar more stable.

Also, GERD (gastroesophageal reflux disease) is acid reflux and is common for people with GP - if the food can't go down, it is going to come back up. So it becomes important to give the best chance that the food can empty out of the stomach before it starts coming back up.

~ Sheri ~

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urnal_individual.asp?blog_id=5444844


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Hi Spark Friends my name is Sandra and I suffer from Gastroparesis among other tummy trouble. I also have GERD, Acid reflux, IBS and my newly diagnosed problem is called SIBO for short. The long name is small intestine bacterial overgrowth. My doctor just started me on a special diet for the Gastroparesis back in june. Now I have to learn another for the SIBO. How they will go hand in hand I am not to sure. I'm always in pain the amount of pain depends on what I eat or what I drink. Any advice on how to deal with the diet I would gladly accept. Thanks and I'm looking forward to getting to know all of you.

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I reached a goal today! Passed the 15000 mark for all time Spark fitness minutes.


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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Saturday was a bad tummy day for me, but other than that, it's been a good weekend.
I have chemo again tomorrow, and that always makes my GP flare up a little bit.


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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Hello, Thank you AndrewsMom for the welcome on my page. I was gone for a week with visitors. I hope you are feeling better Mom2ACat, and everyone is having a good holiday weekend. I was having some issues today, but not bad. So Sorbet huh? Not a bad idea, I have not tried that, I like it. I think I will give it a try.
Talk to you soon
Susan

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Wishing everyone a safe holiday weekend, and happy tummies!


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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4/18/11 4:09 P

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Sinus infection is pretty much gone now, I think, but I have one more day on the antibiotic, then I can start my ethromycin again. I didn't really realize how well it was working for me til I had to go off it for the antibiotic. Not having a lot of stomach pain, just enough to be uncomfortable, but not able to eat as much as I normally do either.


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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4/15/11 6:08 P

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I haven't been doing much on Spark this week, just been too sick. My nasty cold turned into a sinus infection. Went to the doctor today and got an antibiotic for it. Can't take it my erythromycin (I know I'm spelling it wrong) so I can't take my GP meds for the next 5 days, but I need to get this infection knocked out, so I'll cope the best I can and stick mostly to a liquid diet.

I love sherbert! Sometimes when I am sick I blend some lime flavor with gingerale.

Right now I am a little nauseous; I think it's the sinus stuff draining from my throat and going into my stomach; it's flaring up my GERD too.


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



 current weight: -1.8  under
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4/10/11 6:03 P

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Hope you feel better reallly soon!
Colds can be a really tough thing- especially when the nice weather hits & you have cabin fever from a long winter- the last thing you want to do is stay inside & rest---- although it's probably the best thing so your body can heal. Can you handle sherbet? I love oragne sherbet & make it into shakes/smoothies when i don't feel like eating w/ the gp.
Really hope the cold is gone really soon!

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4/10/11 4:12 P

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We are finally getting some spring weather, actually it's summer like today, but I am too sick to get out and enjoy it. Been battling with a cold since Thursday. First cold I've had in almost 3 years, I had forgotten how miserable they can be! It's hard to eat right with the GP the way I feel now; I've been eating whatever feels good on my throat, and not taking my GP meds like I should. I hope today is the last bad day of it and tomorrow I can get back on track with the diet and the meds.


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



 current weight: -1.8  under
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ANDREWS_MOM's Photo ANDREWS_MOM SparkPoints: (104,606)
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Posts: 7,987
4/8/11 2:02 P

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Time for a change emoticon
Seems like there's alot of old / inactive threads on our team page & I know we have a few really active new members so... I thought it's time to spring clean the team page and hopefully get some more activity on here! emoticon

So.....

Anyone have anything they want to share, vent or just chit chat- you found the right place!

Hope everyone is having a great spring day!!!
Now if only the weather would cooperate! emoticon

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