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5/25/13 12:04 A

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I started a new thread for talking about anything and everything. It's a sticky topic in general discussion. Feel free to keep posting here if you'd like, but I thought I'd start another one that wasn't specific to just one season. hehe

~ 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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5/15/13 10:30 P

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Nola

Kansas~ CST
Each step taken is a calorie left behind!

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5/14/13 5:40 P

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Had my chemo today, blood counts were good!


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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5/12/13 10:50 P

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We are expecting a 94 degree high on Tuesday. We just has snow two weeks ago. Next it will be sunburns emoticon

Nola

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5/11/13 4:40 P

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I'll have to bring my hanging baskets inside tonight; there's a freeze watch out through Monday morning; it could get down to 28F tonight. It's been raining all afternoon, and the wind really picked up about an hour ago. I looked out a few minutes and it was actually snowing for a few minutes!


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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5/11/13 12:32 A

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Ready for Spring!

Nola

Kansas~ CST
Each step taken is a calorie left behind!

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5/7/13 6:07 P

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I was supposed to have chemo today, but my white blood counts were too low, so they will try next week instead.

My best friend took me to get my hair cut today. My hair is fine and straight, and when it gets too long, I can't do anything with it but put it up in a ponytail. I got a few inches cut off; now it just barely touches my shoulders, and I got a few layers in it and side swept bangs, I like it. It looks a lot thicker now.

Then we went to Lowes and I got a couple of hanging baskets for my porch, one is pink and white fuchias and the other is a Calibrachoa, a trailing plant that looks like mini petunias, and they are pink.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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5/6/13 8:51 P

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emoticon and emoticon

Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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5/1/13 4:49 P

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My mom was recently diagnosed with kidney disease. I'm going with her tomorrow when she sees the kidney specialist for the first time. She hasn't had any symptoms other than abnormal lab work, so I am hoping that is good sign that it is treatable and can be kept from getting worse. It's about a 45 minute trip out of town, but the specialist comes to our town a few days per month, so for future visits she won't have to travel so far.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/29/13 9:07 P

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THANKS

Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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4/29/13 5:13 P

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Glad you are feeling better Nola!


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/28/13 7:43 P

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I hope that you are feeling better soon. My back is doing much better and my energy level was up today. Wising you a great Sparkling week to come.

Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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4/26/13 6:27 P

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I'm glad you are doing ok from the procedure Nola.

I had an appointment with my internist today; found out I have a low thyroid. That may be why I have felt extra fatigued lately, along with the chronic anemia from the chemo. At least low thyroid can be treated with medication, and I was put on Synthroid today, so I am hoping when it starts working, that it will really help with the fatigue. I have to have more lab work done to check my thyroid levels in 6 weeks. I was told the low thyroid was probably caused by being on chemo for so long.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/26/13 5:40 P

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Ablation is done and I am doing well. I have the left side scheduled for the 9th of May. I was sore and sleepy from the medication but not bad at all.

Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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4/24/13 5:37 P

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Nola, I hope it goes well for you tomorrow!


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/23/13 7:04 P

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I am so glad that you are feeling better. I also seem to be better after finishing the antibiotic. I go on Thursday to have the back procedure and then hopefully really getting better in several ways.

Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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4/23/13 5:55 P

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My best friend took me for some groceries today; it was kind of a "stock up" trip so I was tired when I got done, but not as tired as I usually get from even the shorter trips, so I think the transfusion is helping.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/18/13 8:21 P

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Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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4/16/13 5:50 P

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Had chemo today and hemoglobin is too low again, so I am getting a blood transfusion tomorrow afternoon. I plan on eating my lunch at home before I go, since the time they serve lunch to the patients will probably just be ending by the time they get me set up in my room. Just as well, since with the meals there, there is always something on the plate I can't eat with the GP and they don't really customize the meals for outpatients. I'll probably have my dinner there, but if again if it's something I can't eat I will be probably be done up there before 6pm anyway.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/14/13 5:29 P

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THANKS

Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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4/14/13 3:35 P

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I've never used a fiber supplement. I take magnesium for my bones, (on the advice of my oncologist), and that also helps with constipation, which I am prone to as a side effect of my pain pills. Most of the time the magnesium is enough to keep me, for lack of a better word, "regular" but for occasional constipation I'll take Milk of Magnesia or a stool softener.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/14/13 2:22 P

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The nutritionist I spoke with before also seemed unprepared to discuss GP knowledgeably. I am so thankful to have been able to talk with the nurse practitioner on Friday. She did say that I needed to be using a fiber supplement. Any suggestions?

Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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4/13/13 4:31 P

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Nola, I hope with that advice from the nurse practitioner will help you feel better.
It sounds like she is knowledgeable about GP. When I was first diagnosed, one of my oncology nurses had me talk to the dietician at the hospital next door to the chemo clinic. The dietician admitted she didn't know a lot about GP, but she did some research before she talked to me. She was really great about it, especially since my insurance wouldn't cover me talking to her at the hospital, she came over to the clinic when I was getting chemo and talked to me "off the record". I really appreciated that, as she wasn't getting paid for talking to me, she was doing it because she really wanted to help. She did know quite about about the problems that cancer patients sometimes have with getting adequate nutrition, and some of that I was able to apply to my situation with the GP.

I also look at it as a good thing if she was able to learn more about GP by talking to me, maybe she did some more research and will now be better able to help others with that condition.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/12/13 8:13 P

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emoticon I saw the nurse practitioner today and learned so much more about my GP. She added probiotics and a fiber supplement. I have a better idea of how much and what to eat. emoticon

Nola

Kansas~ CST
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Don't quit! Tomorrow is another day to Sparkle.







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4/12/13 4:40 P

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There's not much I can do for the chemo fatigue until my hemoglobin gets to the point where they can give me a transfusion. The best thing I can do is try to get enough sleep each night and pace myself in my activities.

Nola, I hope the meds get you feeling better soon. UTIs can be miserable.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/11/13 6:28 P

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The GP may have triggered the UTI or the reverse. I will just received a call from the
Dr am to pick up some medications tonight. I see the nurse practitioner tomorrow for the GP.

Nola

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4/11/13 5:11 P

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Nola I hope you are feeling better. Do you know what caused the flare up? And has the Dr. give you something for the UTI?
Shari I don't care how long you have a condition it still gets at you. There are those down times. I've had conditions for better than 20 years in some cases and they never go away! So I feel for you and fatigue accompanies them all too. Rest and get stronger hon emoticon Are there any things to do for chemo fatigue that will help you?

"Life is 10% what happens to you and 90% how you react to it"

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4/11/13 4:00 P

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I've been living with stage IV cancer for 6 years now, and have been on chemo for 3, so I'm used to living with it. It's just the fatigue that is getting to me now because chemo is so hard on the blood counts.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/10/13 10:35 P

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Oh more Chemo Shari, I'm sorry that is so hard on you, and the thyroid may not be helping. emoticon but glad you are not as down about it. I know all this with the cancer must be scaring and worrying you to death! Would some deep breathing and/or meditation to some soothing music help you calm down?
Has anyone tried Acai berry juice? It is said to be loaded with antioxidants and good for some medical conditions. Fusion makes a veggie/fruit juice light version, 100% juice and I've never had them so I am wondering how they taste. Anybody try them yet?

"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
Edgar Ng

"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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4/10/13 6:55 P

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I had a flare of my GP and a UTI this morning.

Edited by: NPA4LOSS at: 4/10/2013 (18:58)
Nola

Kansas~ CST
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4/10/13 5:10 P

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Thank you, I had a rough start to my morning but started feeling better in the afternoon. Not feeling quite so down about things today.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/9/13 8:40 P

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I hope that you are feeling better soon. My thyroid is off so I am wondering if that is part of my problem. I am having constant nausea and called the Dr. today. I should hear something tomorrow.
My computer died yesterday so I may be away more.

Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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4/9/13 5:52 P

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Sheri, you were so right with your comment on my blog yesterday; sometimes it is a lot of work to keep emotions in while dealing with the public.

I had my chemo today. Wrote about it in my blog, but the short version is that my hemoglobin is down quite a bit again. Almost, but not quite, low enough for a transfusion. At least I know there was a physical reason for the extra fatigue, and it wasn't just the emotional and mental stuff, although that plays a part in it too. My chemo nurse is going to talk to my doctor about checking my thyroid again too.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/7/13 4:44 P

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I have a blender but I haven't used it much. I have never tried juicing. With the fatigue issues I have from chemo, it's just too much work for me to prep the fruits and veggies and then clean the blender up when I am done.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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4/7/13 4:34 P

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Has anybody "juiced" their vegetables and/or fruits. I hear there is a special machine for this about $35 that leaves much of the solid content behind. Would that then affect nutrition and or fiber content in a good or positive or negative way? Like would I still get the nutrition of the food without the fiber or does the nutriton stay behind in the solids?

"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
Edgar Ng

"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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4/7/13 3:24 A

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Moisture is good but as a D2 I have to have some nutrition in it. Or my Blood Sugar levels will drop and I could go into a coma. Maybe I should check into some of those meal in a can liquids like boost or glucerna. Or nonfat frozen yogurt, sugar free of course. Thanks for the suggestions.

"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
Edgar Ng

"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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4/6/13 10:13 P

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I have juice, water and or pop. I try to add the extra moisture. Broth is always a suggestion


Nola

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4/6/13 7:17 P

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those were all very positive things Nola! Good Going! Hmmm a few pages, just answer one or two more SP messages or ........ and then its 3or 4 am and you need some zzzzz's SP experts tell me not getting enough sleep affects how I lose weight so its something I need to plan better for too.
Nola when you have a liquid night what do you have for supper? I am feeling some bloated because of a slow elimination system and think that might help. I couldn't resist eating some fruit and veggies, ie apple and carrots and it seems to be not helping either.

"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
Edgar Ng

"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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4/6/13 5:25 P

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emoticon We always plan for just a few pages! I overdid with my back today but I will be home to rest all day tomorrow. My tummy is still emoticon but I know the things I ate and what I need to do now. I am going to enjoy a liquid diet for the night and see how things are tomorrow morning.
I am going to write out a menu plan for this week and see how that works to keep me more in line.
My pedometer fell off when I lest the bus at the library. I did not know it until I was walking back to the bus stop and saw it in the road. emoticon A car had run over it and now it is no longer! I have had it since i began Sparks 3+ years ago.
I hope that everyone has a great weekend.

Nola

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My best friend has MS, and I remember one housecleaner she had a problem with; the woman was very nice, but my friend had to practically follow her around the whole time to make sure everything was done; simple things like picking up the rubber bath mat in the shower to clean under it. She hated to complain because the woman was nice, but eventually she called her caseworker and got someone else. Luckily, she got someone she's very happy with now.

Nola, glad you are getting out and doing some things you enjoy today.

I was up late last night too, but it was my own fault; stayed up too late watching a movie and then I had to read "just a few" pages in the book I was reading; those "few pages" turned into a few chapters, lol!


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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I finished 2 books I was reading and began a third. I also talked with another friend about happier things.
I feel emoticon today so I am going to get out and about and have a haircut, do some shopping and visit the library. emoticon
There was a great interview through G-Pact on my Facebook. It was with three DR.s and a patient with GP. I am going to rewatch today and hopefully can gain some more information. emoticon

Nola

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Sheri I can feel your anger at the situation you find yourself in! That is so unfair! I hope you are able to come to a speedy satisfactory resolution of the situation. Good help is really hard to find, even in the private businesses. When I was much younger I spent a couple of years working as a home caregiver, read housekeeper and errand girl for the mobility challenged, and I never heard so many tales of unsatisfied employers in my life! They always requested me back because I did an honest days work for my pay. but I heard tell about so many who were lazy and poked so slowly they didn't get much done or were dishonest in some fashion. I ended up so down about it that I found another job because I didn't want to be associated with so many disreputable employees.
Nola if you truly listen and care about your friend it is easy to get caught up in their issues and anxiety for them in their problem can add to the downer. But give yourself kudos for being there for her and take a moment to separate your issues from hers. Were you in a good mood before she called? Why? Try to recapture that and distance yourself from what she is going through as you have already done all you can for her, and are not having this same depressing situation. The distract yourself with exercise or something that makes you laugh. It will help pick you back up. Don't forget to put the breaks on any negative self talk that may be bringing you down just now. Hope this helps

"Life is 10% what happens to you and 90% how you react to it"

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"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
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"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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Sorry to hear your friend's anxiety rubbed off on you. Unfortunately some of us are extra sympathetic/empathetic to the point where we take on someone else's moods. BTDT I hope distracting yourself helps you lower your anxiety level back down.

~ Sheri ~

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I am not sure that there are many good housekeepers working for agencies that help low income and disabled people. The best ones have gone into business for themselves.
I talked to a friend tonight that I have know for many many years. I don't know how it happened but when we hung up mu anxiety had risen to about a 10. I am usually the person she turns to when her anxiety is high or she is going into panic mode. Tonight the anxiety seemed to feed into me and now I am having to bring myself down. I am very uncomfortable.
I plan on taking some time tonight to read and watch something entertaining. I need to go back to the 2 I was at before the call. emoticon

Nola

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Wow, I'm really ticked off. About a month ago the housekeeper that the county hired to help me out broke my shower. I've been trying to get the county to help fix it since then because it's a serious hazzard for someone who blacks out easily to be in a bath tub. My social worker said they won't fix it. So I contacted the housekeeping company a week and a half ago and they never called me back. I left a vm yesterday and they called me this morning. Apparently the housekeeper is claiming that she just bumped the tub faucet and tons of rust came out (flat out lie). So I - yet again - explained how that was impossible and that the faucet was stuck on shower (to change it to flow into the tub would've meant beating the diverter severely, hence why it's now broken) and why didn't she come ask a question before doing that when I was just upstairs? They said they refuse to pay for it then told my social worker to call me and tell me that the worker said I was impossible to work with because of my actions (but no one can name what those actions are and why it didn't come up until I asked for a new worker?) and they will not provide anyone else. WTF?!?! She broke my shower and then I had to follow her around the house watching her because she was skipping spots and I didn't want anything else broken. Oh and this is MN - you don't cancel a 3 pm appointment at 9 am because the roads have less than 3" of snow. Every other person in this state is going to work in 3" of snow and by 3 pm the roads will have been plowed, salted/sanded, and are totally passable. Her company even told me she was supposed to call them and tell them to send someone else out because she was 'too busy' for the rest of the week. So she broke their rules but I'm the problem? If she had a sick kid, if she was sick, etc etc that might have been a better reason to cancel, but don't lie and say the roads are impassible after 3" of snow in MN. Do you lock yourself in your house for a week when we get 10-20"? If so, leave the state and don't blame me.

Yes I am absolutely furious about this. The fact that people pull this crap just shows how ridiculous this society has become - being able to blame someone else for your mistakes to escape owning them and correcting them, or at least apologizing. My social worker said she's now going to have some people come by to give estimates to fix the problem (IOW take off the faucet and replace it) and ask the county to pay to fix it - because "they must know how much it will cost to find out if they can pay for it." Basically, she lied to me about asking to have it fixed weeks ago and just told me it wouldn't be fixed. Then apparently there's only 1 other company in the county who can be contracted to do cleaning for disabled people. But now I have been completely burned and I'm wondering WTF is the point? It took months for this housekeeper to be hired so it's going to take months to set up the new company and what's going to happen when I end up with another person who is going to break something, skip cleaning some things, or just decides they don't want to work on some day? Hell, I'm already being forced to risk my life and take a bath 1-2x/week and I'm dealing with infections because of poor hygiene, so why not go back to just doing the most basic cleaning myself and not give a crap anymore? If I pass out cold after vacuuming for 10 minutes, if the bathrooms are absolutely disgusting again because I can't bend to scrub, or my garbage cans and recycling are overflowing because I can't take it out, so what? I've lived like this for awhile so why worry? Besides, there is no consensus about what they should/can/will/are allowed to do, and I was told I have to tell them what to clean/errands to run/etc when they're here, so how am I supposed to know what to have them do when no one can decide what they're actually here for?

I've learned many times that the only way something is going to be done is to do it yourself. Counting on someone else all but guarantees that it will not happen. Delegating is good in theory, but asking, asking again, showing how to do, asking again, begging/pleading/ordering, then giving up and doing it myself is what tends to happen instead. Besides, apparently I am causing problems for everyone around me, so maybe it's better for me to just stay away from people as much as humanly possible. Not like people actually need human interaction to be healthy... oh wait.

~ Sheri ~

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


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3/31/13 8:28 P

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thanks for the information Sheri. My Gastroenterologis and my Gastro surgeon are both very good in GP they were the ones that diagnosed it for me. They do know what they are doing, just hard to ask questions of between visits. I think I will ask about a dietician that is more specialized in Gp to talk with. When I said the pain came when I took the first bite I meant when it hit my stomach and the pain is exactly where the ablation was done. It does have to do with acid and the procedure but the surgeon isn't sure exactly what it was. However he assures me it will go away when I heel.

"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
Edgar Ng

"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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Kacey - If you're getting pain the instant you take a bite, it's doubtful that's the problem. It takes a few minutes for food to drop down your esophagus and into your stomach. If it's happening instantly, it's probably something else. Acid starts being produced when you taste food, as your stomach prepares for it. If the pain is hitting immediately it could be there's a problem with the acid production in your stomach, such as a blockage from the surgery. Also, where exactly is the pain? If it's not in your far left side, between the top of your hip bone and bottom of your rib cage, then the pain isn't in your stomach at all. Gastroparesis isn't restricted to the stomach, it does affect all parts of the digestive tract, so it could be a number of other organs aren't functioning properly either. Just more reasons why having a GI doctor who really knows about GP is so important. Many other doctors can't grasp the complexity of it. Also, be very careful with new foods. Just because you don't have problems in the first few minutes or hours means nothing. Eating just 1 food that your body doesn't like can cause problems 2, 3, even 4 days later because it takes that long for it to move through your system.

Nola - Be careful of doing too much. Don't forget that stress and pain can flare GP symptoms. It's easy to overdo it on good days, but knowing your limits is helpful. Hope you can spend some time tonight relaxing so you have a better week.

Shari - So glad you made it to Easter service. Hopefully the side effects are slowing so you can enjoy your week off.

I'm spending the day relaxing and watching tv. Unfortunately my cat has decided to be sick today and threw up 4x in less than an hour, so I'm watching him closely. Took away his food for awhile, but I just let him have some more and he seems okay, so hopefully it passed. Every time he throws up several times in a row I start worrying that he's developing GP, since it's relatively common in some animals as in humans. Tonight finishes off the Bible mini-series on History, so I'm going to be watching that. Unlike most, I've enjoyed watching it to cement how much I abhor organized religion and it's given me more information that supports my own viewpoints. I often crave information of all types and I will always strive to continue learning about a wide variety of topics in an attempt to slow the cognative decline I've been experiencing lately. My body might be failing and my mind might be failing but there is always new information for me to find and consider.

~ Sheri ~

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


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emoticon I have been trying to convince myself for the last 62 years.

Nola

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3/31/13 6:58 P

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Softly and Slowly Nola. Baby steps not full out run for the ribbon when you are recovering. emoticon

"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
Edgar Ng

"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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I overdid today with trying to catch up on home chores. Hips are reminding me that I have exceeded my limit. emoticon

Nola

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emoticon for Shari and Nola So glad things are better! For me too. I was able to do some exercise today. Had waffles as a special Easter Treat have not had them in years but I had them with sugar free syrup and low fat margarine and it was great, no stomach probs at all

"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
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"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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I'm glad you are feeling better Nola!

I know I hurt more if I sit for prolonged periods of time, which is why I'm usually extra achy after chemo, because I sit there for 3-4 hours. I can get up and move around but it's a small clinic and not much room to walk around plus I have to haul the IV pole with me. Even on the days I am the most exhausted at home, I try to get up and move around about 20 minutes or so.

My stomach is better today, but I'm still being a little extra careful with what I eat. I was able to go to the Easter breakfast at church this morning and the service. They had eggs so I was able to get my protein that way. I'm glad I can eat eggs with no problem, they are one of my go to foods when I am having flare ups of my tummy troubles. I like restaurants that serve breakfast all day, because if there is nothing else on the menu I can eat, I can at least have eggs.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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emoticon No GP pain for 3days. I bought some cheese crackers to have when I need a snack at work. I also have some of the individual containers of applesauce that I am keeping in my drawer.
I took a short walk outside today and am doing some house chores. I am catching up on my Sparking but need to be mindful of sitting to long and triggering the OA.
Wishing you all a glorious day!

Nola

Kansas~ CST
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Yes I will have to see if I need a regular nutritionist from my GI when I visit next, I have a diabetic nutritionist I work with already, and yes can only have 1/2 banana as 1 fruit serving but it is because of the carbs involved not because it is hurtful to eat. Both times it was exactly one bite and it hit immediately. Even my GI surgeon says it doesn't know what caused it.
Thank you for the intro information I'll go read that now

Blessings of the Holiday to you all emoticon

"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
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"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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I posted a bunch of information on your introduction thread. Check that out. Also, check out the thread about what foods to try or avoid. It is very important that you get a nutritionist to work with you because diabetic gastroparesis needs very special attention to food intake. Most of us here have ideopathic gastroparesis, so we don't have to manage our blood sugar like you do. A nutritionist and your GI doctor will be able to give you better guidelines.

I was just thinking... most diabetics are not supposed to eat more than a small amount of banana at a time. For instance, my grandma ate 1/2 of a banana a day. That's something to talk about with a nutritionist.

~ Sheri ~

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


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3/30/13 9:23 P

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Sheri thanks for the advice. I have tried bananas in the past and nooo problem. Since the surgery twice i've tried and the same result. The other foods I was eating I have been on since surgery with no probs and my GI surgeon has no idea what the cause is. He didn't think it was a raw spot as I'm healing okay, but it might suppose, be a nerve. Well letting bananas go for now. Will try again when completely healed.
I should be shifting to more solid foods soon. Had green beans today and that was fine lol

Have other questions that someone may know - if I cook fibrous veges and then puree them in a blender is there less fiber?I really have to start reading up on this GP stuff. I wonder what the GP diet is and if it would work with my diabetic needs. Does anyone know where I can read up on the GP diet? Kacey


Edited by: IKACEY at: 3/30/2013 (21:26)
"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

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"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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Shari - It does make sense that putting chemicals in your body will mess with the chemicals released by your body. Then your body has to figure out how to handle those chemicals and everything else your body deals with, so who knows how it will react on any one day. Hope going bland for a day or two will help. Light-headedness is not fun (as I know well) so hope you're being extra careful.

Kacey - Unfortunately, I have an ongoing, unending, continuous list of things that need to be done. I haven't been without something that must be done in many years. When I finish something there's always something else to do. Considering my medical conditions, it is difficult for me to accomplish anything, so everything piles up. Add in cognitive issues and I'm a mess. I don't go looking for things to worry about - they find me at an insane rate. At this point, if I wasn't under exorbitant amounts of stress at all moments I'd probably explode from the lack of pressure. Even on my rest days there are things I should be doing if my body allows me to function at all. Feel free to check out my sparkpage where I talk about my diagnoses if you'd like to know more about what I'm dealing with.

Be careful assuming which foods are causing problems. The reason why we must slowly add foods to our diets to 'test' them is because it can take 3 days for food to go from one end to the other, and if your body doesn't like it at all during that time it will react. So if you ate something yesterday that is now upsetting your system, you could confuse it with a food you recently ate that isn't a problem. Someone else also thought bananas were a problem, until they realized it was something they had eaten the previous day causing the problem and hasn't had a problem with bananas since. You can also end up with odd pains for other reasons. For instance, part of my GP is due to my Ehlers Danlos, which is a genetic disorder that affects connective tissue. If I don't lay down after I eat my stomach will not empty, which then the weight of the food sitting in my stomach for many hours to an entire day pulls my stomach down and I feel severe tearing pains. So the fact that you've had surgery in your stomach, you could be having pain from something to do with the surgery spots and not from the food itself. That's something you'll need to talk with your GI doctor about ASAP in case it's a sign of something going wrong. Also be aware that diabetes and surgery can cause damage to nerves, and damaged nerves send off odd signals. So it's possible the nerves are just throwing temper tantrums.

~ Sheri ~

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


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3/30/13 5:10 P

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Sheri I am a Christian but don't usually run around tossing sayings at people. In this case I think it would help. The quote is Matthew 6: 34 "Have therefore no concern for the morrow: for the morrow shall have concern for the things of itself. Sufficient unto the day is the trouble thereof. " Those issues will come up. You need rest. Therefore don't worry about those issues until the do show up and you will be able to rest and focus on other things. Its a well known Psych fact that if you don't inflow care to yourself you have none to outflow to others or other things. Like letting your gas tank in your car run dry. Hope you let yourself rest today emoticon Kacey
Shari thats unfortunate. When, as a diabetic or with my stomach procedure I had to have a bland soft partially liquid diet the Dr told me to have some ice cream to fill in the calories and not be so light headed. Also things like yogurt, pudding or shakes, tho the last is toooo much sugar for me.
Having a much better day today for me, no pain no painkillers, but still watching the diet. Yesterday something happened which my gastreoenterology surgeon didn't understand but I wonder now if my GP is kicking because of the procedure. I tried to eat a ripe banana. Soft right? But it shot a pain thru my stomach like a hot knife. Have bananas done this to anyone else?

"Life is 10% what happens to you and 90% how you react to it"

"No one can make you feel inferior without your consent." Eleanor Roosevelt

"Taking ACTION is the ultimate power of Motivation. Nothing beats it, period."
Edgar Ng

"Some people quit due to slow progress, never grasping the fact that.......slow progress.....is progress."




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I'm dealing with a flare up of my GERD today; it started at 4am. Not sure what brought it on, but it could be just from the chemo. I was told by one of my doctors that chemo causes the stomach to produce more acid. Just sticking with a bland diet today.

I was bummed to have to deal with this setback today, after having 2 fairly good days. Feeling a little more light-headed than usual from my pain pill too; that happens on days I can't eat very much. I didn't have much on my "to do" list today, and I got everything done early in the day, so that was a relief.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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Nola - Knowing the signs for low blood sugar can be important. You don't want to end up like me, having a blood sugar in the mid 30s to mid 40s and have no outward signs of it because the body has become accustomed to those levels. It sucks - especially on the few times when I do get symptoms and my entire body freaks out. Plus it's seriously unsafe to drive with low blood sugar.

As for food to keep when working late, if you have foods that don't need to be kept cold or warmed up, then if you realize you need to eat something you can grab and eat quickly. I was always saying 'I'll do it after I finish this', which meant I would hold off going to the bathroom until my bladder went numb then wanted to burst and I could go an entire workday without eating or drinking anything. When I had stuff at my desk I could just grab and keep working there was no excuse! Lately they have just about anything in a grab-and-go or single serve package. It costs a little more, but sometimes it's worth it. I used to always keep some fruit leather, fruit snacks, etc in my lunch cooler (it was a small cooler but big enough to carry everything) so I always had something then I'd replace it when the stash got low.

Oh my krikies I've had 2 exhausting and difficult days! So glad to have some major tasks done (taxes, paperwork submitted to try to hold off the foreclosure, mediation with my horrible neighbor, ordered more checks or I soon couldn't pay bills, etc). Hope I can actually relax a bit this weekend before I figure out my next big issues to tackle - there's always something else I need to do.

~ Sheri ~

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urnal_individual.asp?blog_id=5444844


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I am on Protonix for my GERD, but I keep a bottle of Tums by my bed if I wake up with acid reflux symptoms during the night.

Sheri, thanks for that tip about the Xanax. I have had to take it for MRIs because of being claustrophobic, so that would be a good time for me to take it that way, if I have to have another one in the future.


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3/29/13 2:48 P

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Shari I took Xanax before. It made me groggy for the first week but my anxiety and lack of sleep went away really well. The way it worked I'm sure it was the cramps that kept you awake. My first day I was so groggy that I walked right by people I knew and didn't recognize them and kept falling asleep in my college classes which I usually totally enjoyed. But it goes away as you get used to it and then you just feel relaxed when you take it.
Nola sugar levels are tricky. As a D2 I have to do activity but not too much at a time or my level shoots down, or if I wait longer than between 5 and 6 hours to eat or don't take in enough calories to offset what I burn working out. On the other hand what I eat and how much and how often can affect sugar a lot too. Check the carbs and sugar grams if its too high. Its tricky to eat small meals instead of normal meals. I need to wait at least 21/2 hours between them or my sugar level rises and stays up.
I get night time stomach burns at night too. Its from Gerd and Gp. I use Maalox extra strength chewable tablets with anti gas. I chew two of them and sleep the night away. Hope this helps.

Edited by: IKACEY at: 3/29/2013 (14:50)
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3/29/13 3:27 A

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I am learning to look for the signs of blood sugar issues. I guess I have been missing the signs of low blood sugar and just thinking I was having food issues. I am more aware after reading more will try to keep more snacks available. Wondering what will be good to have around work. I may take an extra half sandwich when I have to work later.
I am up at 2 am with pain issues. My hips are screaming and my stomach feels like it is on fire. emoticon

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Nola - Glad you're able to get back to work. It is difficult to give up a chance at a little extra money for anything less than a 'good' reason, but I think your health is possibly the best reason to not work overtime. I was doing that a lot right before I had to stop working, because I knew what was coming. I couldn't eat, could barely sleep, and my body was breaking down around me. But I pushed myself harder because that time and a half was something I was desperate for. Still, I knew when I stopped working it would probably be for a long time, if not forever (which is exactly what's happening), so I needed the money desperately. For you, it's probably much better to put your health above your work. After all, if you miss out on pay because you stay at home sick (or have to use sick leave), is it really worth the overtime?

Also, be sure to carry a few snacks that you can handle at all times, because then you'll never be forced to miss a meal because there's no good options.

Shari - Are you putting the pill under your tongue or just swallowing it? When I was first given xanax, I was told to make it kick in quicker put it under my tongue and let it dissolve. The taste makes my stomach revolt and I start dry heaving, so I normally didn't take it that way but could if I needed it to kick in more quickly. So if you ever find you need it to kick in more quickly you could try putting it under your tongue.

Today was just awful. I didn't get to eat until almost 9 pm. Went and got my taxes done, which took 3 1/2 hours! But at least they're finally done. Then had to rush out to go to the mediation with my horrible neighbor. Wow, this guy flat out lied to the officer and mediator then had to have it explained to him by the officer that I was not the only neighbor calling to complain about him. The officer and his partner will be coming by tomorrow night to try to help find a volume on his tv/stereo/etc that allows him to 'live my life' without severely interfering with my life. But first the officer is coming to my house so I can bring up the multitude of other complaints I have against my neighbor. Doubtful this is really going to do anything, but maybe when (I can't imagine the possibility of it not happening because I'll be so screwed) my disability comes through I can look into other housing and just get the heck out of here.

~ Sheri ~

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urnal_individual.asp?blog_id=5444844


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3/28/13 4:29 P

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Nola, glad you are feeling better.

I took just a half a Xanax last night, and it was still enough to make me sleepy within 20 minutes. I slept pretty good last night, and I didn't feel as groggy this morning as I did yesterday, so I think I will stick with the half dose.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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3/28/13 9:54 A

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I buy the individual Mott's and have tried the strawberry applesauce and now have the mixed berry and enjoy them both and it gives me some variety. I did miss the whole day at work yesterday but feel like going in today. I think I have been trying to work too many hours and wore myself out. I am going to cut back although I do enjoy a little extra money.
I am gong to have to be careful about missing meals. I think that was what messed me up on Tuesday.
I made Chocolate Peanut Butter Pecan pies yesterday for a friend and his family. They are the families favorite.
Well, I am off to work now. Talk to you later. Take care of yourselves. emoticon

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3/28/13 3:17 A

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Yeah, xanax can be pretty strong, even at a small dosage. Hopefully it will help you sleep tonight.

I'm not looking forward to an annoying and frustrating day tomorrow. Gotta get to sleep soon or it will be even worse due to lack of sleep.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
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3/27/13 4:26 P

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The Xanax made me so sleepy last night, but I could not sleep because I was having some painful cramps, which sometimes happens after chemo. I felt groggy for a long time after I got up this morning; not sure if it was because the Xanax was a little too powerful, or the lack of sleep, but tonight I am going to try just half a dose and see if that will work. I'm sure if I hadn't had those painful cramps last night I would have slept like a baby.

I didn't get up til 11am, which is late for me. Feeling a little bit better this afternoon but still don't have much energy.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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3/27/13 1:42 A

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I've been on alprazolam/xanax before. I know you're expecting to be in the house the rest of the week, but be careful while taking it because it can cause some impairment making driving and full-functioning difficult in some people. When I was on it if I took it it knocked me out hard, which I LOVED. The doctors don't want me on it anymore because of my severe side effects to anti-depressant/anxiety medications. I hope it helps you!

Yeah, my taxes are insane this year. I went to the library to pick up some of the tax forms I need, but they don't have all the forms I need. I know I'm getting my taxes done for me, but I want to try to do most of it myself so I know what they're doing without me having to question everything. I've had people mess up my taxes before (a guy who was going for his CPA in fact, and I had to refile the next year to get back an extra $800+). So I'm hoping to work on my taxes more tomorrow.

All day today, from being woken up from several dreams until now, I've had INSANE tinnitus on and off all day. It's like nails on a chalkboard, plus several octives, being amplified by a bullhorn. I've had tinninus for years, but this is a new sound and it's happening more frequently and for longer periods of time, but my doctor wants to ignore it. UGH Took meds in hopes of sleeping it off.

~ Sheri ~

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


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3/26/13 7:16 P

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Those taxes sound like a headache even without a cognitive impairment! I hope you get the biggest refund possible to make it all worth it.

Long day today with chemo and oncologist appointment. Wrote about it in my blog. Treated my best friend to lunch before she took me to get my prescriptions and groceries. I loved spending the quality time with were but was glad to be back home for the day. It's the longest I've been out of the house for a long time.

Hopefully I will get some better sleep tonight, and I got some Xanax to try for my anxiety. A lot of what is not making me feel so good tonight would be improved with a night of good sleep.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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3/26/13 1:03 A

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Applesauce helps thicken up a smoothie a bit without making it hard to swallow. My base used to be non-fat plain yogurt, applesauce, a little Silk fruit & yogurt, and carnation instant breakfast powder. Then I'd add in some berries and sometimes a little light ice cream.

I spent hours on the phone today dealing with tax stuff. 1 of my 2 401(k)s I pulled last year has a rule that you can't touch that money for 10 years, unless you have extenuating circumstances. Of which, disability is one of them. Well, they put on the form it was a premature distribution and will not correct it. So I can't even do my taxes online because no tax program will allow me to fill out the forms I need to complete to claim the incorrect coding and prevent them from collecting an additional $700+ from me... well, actually give me less of a refund. Such crap! I spent a half hour on hold with the IRS to figure out how to do the form to make that change. I also found out the 'free' tax service I found can't do my taxes because they only do 1040EZ forms, not the 1040 I need to do to claim my mortgage, over $10,600 in medical, and some other things. Which means I had to spend time finding a different program. Which means I have to drive at least a half hour to offices in St Paul to get free tax prep help. I'm going to try to do much of it myself before I get there so I know what's going on and if they're really messing something up or not. (I have to go to the library tomorrow to pick up tax forms and do whatever I can figure out ahead of time.) Isn't it wonderful to make a person with cognative issues have to screw with all of this?!?! At least this place, which normally only takes walk-ins, gave me an appointment so I don't have to stand in line potentially for hours. Debating if I'll take disability transporation there, but I doubt it because my appointment is at 11:30 and I have to be back in my city by 3:30 for the mediation appointment with my horrible neighbor. Can't be late for that. At least it seems like I'll be getting back a significant refund - like 6-8 weeks after I file. ugh

~ 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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3/25/13 4:31 P

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I've never thought of adding applesauce to smoothies; that is a great idea.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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3/24/13 8:31 P

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I can't do applesauce for more than a few days before I become totally sick of it. I buy single serving 6-packs and it can take a year to eat them! When I'm making smoothies in the summer I'll mix in some applesauce, but during the winter I'm just way too cold to make smoothies.

I'm watching The Bible series on History. Yeah, this is reinforcing my innate disgust with organized religion. I won't go into any more detail than that.

~ 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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3/24/13 2:47 P

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Nola, glad the injections are helping. I like the Mott's Granny Smith applesauce the best. I buy it in the single serving size packs. I also keep unsweetened single size serving packs on hand, they are very handy if you need to use applesauce in a recipe but don't want to open a big jar.

I remember Mott's use to make a pear flavored applesauce that was good but I have not seen it where I shop for a long time.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

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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3/24/13 11:46 A

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1/2 cup of Motts Strawberry applesauce and 1/2 sandwich for breakfast this morning. My blood work was not great at the beginning of the month. My cholesterol was up as was my glucose. I am not diabetic but he ants to retake them just to be sure. I think the cholesterol may have been up due to no exercise for the last couple of months. Hopefully the new tests will be better. emoticon

Nola

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3/24/13 1:34 A

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Shari - My favorite is to have on shorts/tshirt (or bikini) and lay on my stomach with the sun on my back. Feels so good to have the sun on my body, not so much my face.

Nola - Glad the injections are helping! If you're having issues getting enough calories, don't forget liquids like gatorade or ensure, even smoothies. If you still have problems, a last option is sucking on some gummy snacks that are pure simple carbs. Simple carbs can be absorbed in the mouth so it bypasses the digestive system and can help keep you going when you can barely eat anything. Just something to remember if you need it.

Lazy day for me, which I needed after yesterday. I medicated myself to sleep because the pain was so excrutiatingly intense after working on my taxes. Even after I woke up I was so tired that I laid down and took a couple hour nap in the afternoon and I'm ready to fall asleep again now. Hoping for some energy tomorrow.

~ Sheri ~

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


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3/23/13 6:09 P

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I am feeling much better since my back injections. I'm doing my laundry today and trying to stay warm. I am also learning better how much my stomach will hold before the pain starts. I finally came to the realization that I can't eat as much as our diet calls for. I am eating smaller portions and seem to be doing so much better. I hope that you each have a better week this week. emoticon

Nola

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