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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
2/28/11 11:58 P

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Doctor appointments... I tend to get worried about them because so many times I've been mistreated by doctors. While I'm in there, I never get through everything I want to deal with. I just don't like doctors, yet it's not like I'm getting consistently better without them. ugh

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
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Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
2/10/11 12:29 A

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I needed to replace my car and could use some ideas from my fellow sparkers. Check out my blog and give me your opinion.

~ Sheri ~

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


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
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My sparkfriends are my greatest support and I'm grateful for it.
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2/8/11 4:30 P

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Started a new chemo today called Navelbine; not sure yet how it will affect my GP, but it does cause constipation, like the chemo I was on previously did, so I will have to take my Miralax for a few days after each treatment.


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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1/6/11 4:38 P

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Another followup appointment with my GI doctor today. He is pleased with how I am doing on my meds, but concerned that I have lost 4 pounds since I saw him last month; he does not want me to lose anymore weight. I see him again in May.


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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MMAKAZIPPY Posts: 25
1/2/11 3:45 P

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Hey girl, just catching up on you and am saddened to read of the ongoing trials you and your DH have been placed under. My heart and prayers go out to you both. Do not be afraid to ask for help, if you don't take care of yourself you won't be able to take care of him.

"I don't want to get to the end of my life and find that I've lived just the length of it. I want to have lived the width of it as well. - Diane Ackerman


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12/31/10 5:41 P

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Happy New Year everyone!


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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12/8/10 3:48 P

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I got a call this morning from the dietitian; had to cancel my appointment for tomorrow morning because the insurance won't cover me seeing her at the hospital, but since the Specialty Clinic where I see my oncologist is right next to the hospital, she is going to come over and see talk me there while I am getting my chemo on the 21st. She would do it while I'm there on the 13th, but she already has a patient scheduled for that time. I think it's so nice of her though that she wants to help me even though she won't be getting paid for it; that is someone who does their job because they truly care about the people they help!


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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12/7/10 3:24 P

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I have an appointment set for Thursday morning to talk to the dietician at the hospital.


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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12/3/10 4:19 P

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Thank you so much!
Today I am still adjusting to eating the "mini meals" instead of regular size ones.
I also cleaned out my cupboards and all the foods that I can no longer have I will give to my mom and dad or donate to charity.


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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LUCKY-13's Photo LUCKY-13 Posts: 11,837
12/3/10 6:25 A

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You're definitely not alone! One estimate shows that at least 10 million people in the US have GP!

I posted more on your intro also, but we'll share info on what works for us, what meds we've tried, what foods are easier to digest.....

Welcome! And please let us know how we can help!

Hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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12/2/10 6:31 P

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Hello!
I am new to this team but not to Spark.
I just found out today I have this condition.
I posted more about it in the introduction forum.
I was very happy to find this team here on Spark, it's good to know I am not alone.


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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11/25/10 9:21 P

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Happy Thanksgiving, everyone!

The doctor said I have a bowel obstruction again. Hopefully I can avoid surgery this time. I don't have time for it.

Love you all bunches,
Lynda


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11/23/10 1:29 P

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Thanks Lucky. The symptoms have stopped. Right now, I'm just weak so I'm resting today because I need to be able to take my DH for his chemo in the morning. I lost 9 pounds in 4 days, but I'm sure it's just fluids so I'm drinking water today. That should help. I can't go to the hospital because I have no one to stay with my DH or to take him to his Chemo. I have to truly rely on the Lord to heal me in time to do what it is that I need to do, so please pray for me. Thanks, again.
Love, Lynda
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LUCKY-13's Photo LUCKY-13 Posts: 11,837
11/22/10 7:41 P

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Lynda,

I wish you'd go to the ER! That kind of bleeding and the diarrhea can be dangerous, especially when it's been going on this long!!! It sounds like you need to be in the hospital!

Hugs and prayers,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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11/22/10 1:45 P

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Please pray for me. I have been sick since Saturday night with severe stomach pain, rectal bleeding and vomiting. I now have diarrhea. It's hard to care for my DH when I'm this sick. Thanks for the prayers.


Lynda


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11/20/10 7:26 P

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My DH developed an infection last week. I wasn't sure that they were going to give him his chemo on Thursday, but they did, so he is pretty sick today.

Three and a half weeks ago I hurt my right shoulder. It was still hurting on Monday, so I went to the doctor. I have a torn rotator cuff. He gave me a 12 mg decadron injection in that shoulder, hoping it would help. I will go back on Monday, and then probably off to physical therapy. If that doesn't help, I'll need surgery. I'm supposed to rest it, but it is my dominant arm and I'm the chief cook and bottle washer now. It's really hard to rest. Oh well!


Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
11/17/10 8:12 P

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Hope things are going better for you and your DH, Lynda! You both have been through so many trials and tribulations that you serve as wonderful examples of determination, strength and faith!



Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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11/11/10 10:59 P

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My DH had his second chemo today. He hadn't recovered from his first chemo yet. He should have a tough time this week. Thanks for asking and thanks for the prayers.

Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
11/11/10 6:26 P

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Lynda,

I'm happy to hear that the new medicine is working!

How is your DH doing?

Thinking and praying for you both!




Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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11/9/10 2:09 P

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So far the new medicine is working!

Lynda


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11/8/10 5:11 P

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Thanks, Lucky!

Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
11/6/10 8:26 P

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Prayers being sent up!
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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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11/5/10 5:35 P

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The Emend is out. My insurance company will only pay for 4 of them a month. I would have to pay for the other 26 at a cost of $3,142.00. That is not a typing error. His office searched all day for one that my insurance company would cover. It's called Anzemet. The insurance company will pay for 5 days to see if it will work. If it does, then they will pay for a months supply, because it is also very expensive. Please pray that it works. Thanks.

Lynda

Lynda


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11/4/10 4:44 P

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Thanks,Lucky. The doctor is going to try something called Emend. It's a pill. I'll try it and see.

Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
11/4/10 6:32 A

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Lynda,

You and your DH are in my daily prayers!!

I was surfing on the net and found the website for the patch you need. This link takes you to the company's page for a coupon that might help, please contact them - you might be able to find out when the patch will become available or if there's another place you can get it mail ordered.

www.sancuso.com/patient/about/sancus
o.
php


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Edited by: LUCKY-13 at: 11/6/2010 (20:24)
Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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11/2/10 1:16 P

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My pharmacist just called to let me know that there is a manufacturing problem with the Sancuso patch and that it won't be available again until the middle of December. That is the only medication that allows me to keep food down. I had just started to gain weight back. I'll see the doctor on Thursday to see if there is anything else out there that might work in the meantime.

My DH and I have been spending a lot of time taking care of business. With multiple myeloma, a patient can have weeks to years from the time of diagnosis, only God knows. However, the prognosis isn't good. He was concerned about finances. We currently live on military retirement, his social security, va benefits, and I get a small ss check. I will lose his military retirement (the greatest part of our income) and my small ss check. I will however get his social security and a benefit from the va. If I tighten my belt I should be able to make it. It may seem premature to be concerned about these things, but if we get these kinds of things out of the way now, then we can enjoy the rest of the time that God gives us.

Multiple myeloma is a cancer of the bone marrow and therefore attacks all the bones. My DH faces infection, fractures, severe pain, to say nothing of the reaction to chemo and radiation and possible stem cell transplant. He is already experiencing exhausting, lower back pain and some mental confusion. Please pray that he does not suffer. Also, please pray that I can be what he needs me to be when he needs me. I don't know how long this road is that we will travel, so please pray that God will give me the stamina, peace, and joy with which to travel it and that I will praise Him all along the way. Thanks.

Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
11/1/10 9:16 P

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Lynda,

You both are in my daily prayers! I hope the chemo works for him!

Hugs to both,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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10/28/10 12:46 P

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MY DH HAS MULTIPLE MYELOMA, WHICH IS BONE MARROW CANCER. HE STARTS CHEMO NEXT THURSDAY MORNING. THE DIAGNOSIS IS DEFINITE. WE EVEN SAW THE SLIDES. WE ARE BOTH IN VARIOUS STAGES OF SHOCK, HIM, MORE THAN ME.


Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
10/27/10 9:19 P

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Woo hoo!!!! The weekend is getting closer!!! YAY!!!

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
10/26/10 10:02 P

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Fresh, juicy peaches are divine! But like you, I can't digest fresh ones, but I do pretty good with ones that are canned in juice, or taking the fresh ones and making them into a smoothie.

From time to time I also want to see if I can eat something that I miss. I ate a small handful of corn chips and got sick some hours later. With my gallbladder out, I can't tolerate greasy food and they slowed down my digestion to where they fermented and I got sick. The same thing happened a few days later when I tried to eat a small handful of peanuts. These two items are going to have to stay on the do not eat list, and I've got to stop being so stubborn!

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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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10/26/10 8:51 A

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About a month ago I decided that after 16 months I was tired of a modified liquid diet and that I would slowly try to add "normal" foods back into my diet. Well, I blew it! One Sunday, I went to the grocery store for my DH and saw some of the most delicious looking peaches. You guessed it -- I bought 8 of them just for me. I was like a recovering alcoholic on a binge. I ate all 8 of them between Sunday afternoon and Wednesday morning. My body was telling me to stop but I didn't listen because the peach flavor and the texture of real food was just too intoxicating. By Wednesday afternoon I truly looked at least 8 months pregnant. I realized that I had not burped or passed gas since Sunday. I was in severe pain to the point of wanting to go to the emergency room. Around 6:00pm I finally started vomiting and I think I vomited all 8 peaches. Was it worth it? Maybe. The risk definitely was not. I realize how foolish I was in my choice and my reckless overindulgence (8 in 4 days). Since then I have been back on my modified liquid diet. Will this be my fare for the rest of my life? Who knows? I do know, I won't try peaches again.

Have a great and blessed day everyone!

Love you all bunches,
Lynda
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Lynda


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10/25/10 10:38 A

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Hi team, I'm back after a much needed rest. So much has happened to me that it would take me all day to write it out to you. I'll tell you about it a little at a time. However, I would like to tell you what happened to me this past Friday when my DH and I went to Walmart to buy a few groceries. It's in capital letters because it is so incredibly special. Here goes.

WHEN I WENT TO PAY FOR THE GROCERIES, THE CASHIER SAID TO ME, "I SEE YOU SITTING!" MY RESPONSE OF COURSE WAS, "WHAT?" SHE REPEATED, "I SEE YOU SITTING!" I SAID FOOLISHLY, "I'M NOT SITTING." SHE STATED, "THE HOLY SPIRIT IS REVEALING TO ME THAT YOU SPENT A LONG TIME SITTING!" THAT'S WHEN I TOLD HER THAT I HAD BEEN PARALYZED FOR 22 1/2 YEARS AND HAD BEEN IN A WHEELCHAIR BUT THAT GOD HAD HEALED ME IN AN INSTANT WHILE I WAS HOME ALONE ON DECEMBER 21, 2007. SHE SAID THAT SHE DIDN'T SEE THE WHEELCHAIR, JUST ME SITTING. I REPLIED THAT I NEVER LET THE WHEELCHAIR OR THE DISABILITY DEFINE ME. SHE THEN SAID "THE HOLY SPIRIT WAS REVEALING TO HER THAT I AM WALKING NOW AND WOULD BE FOR MANY YEARS TO COME."

THE WHOLE INCIDENT WAS SO SURREAL THAT IF MY DH HAD NOT BEEN THERE AND WITNESSED IT ALL, I WOULD HAVE TROUBLE BELIEVING THAT IT EVEN HAPPENED. BUT IT DID. NOW I NEED TO PRAY ABOUT WHAT IT ALL MEANS AND WHAT EFFECT IT SHOULD HAVE ON MY LIFE.

As most of you know, I was diagnosed with transitional cell carcinoma of the left kidney this summer by four specialists. Well, they were wrong. It turned out to be a large cyst filled with dried blood where the kidney had hemorraged in June. This is the second time in as many years that I have been diagnosed with cancer only to find out months later that it was something else. Based on what the Holy Spirit revealed to that young lady, I am no longer going to be filled with a sense of dread when I get a diagnosis until it is "definitive" and even then I won't be filled with "dread."

Please pray for my DH. He had a bone marrow biopsy last Wednesday because his platelet count is over 1,000,000. This could cause another major stroke, which in his case could be fatal. We'll get the results this Thursday.

I missed you all and I'm glad to be back.

Lynda

Edited by: READINGDOC at: 10/25/2010 (10:39)
Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
10/25/10 5:59 A

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The article about the new GP medication is on it's own thread.

Has anyone else heard anything about it?
How is everyone's GP?
With the holidays (Thanksgiving, Christmas, New Year's, etc.) right around the corner, is your GP worse?
How do you deal with your GP when the pace is hectic and life seems more stressful?

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
10/19/10 5:57 A

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Good morning all!

These past few months have been very hectic so I haven't been on the site as much. Things will slow down in another 3-4 weeks though!

There was an article I received in my email this morning about a new GP medication that is making it closer to being approved for prescribing. It should be very helpful for GPers with diabetes.

Hope everyone has a great week!

Edited by: LUCKY-13 at: 10/19/2010 (05:57)
Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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10/13/10 9:53 P

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This week has been so busy it's almost a blur! And the month will soon be half over. And here's a frightful thought! Only another 6 weeks left in this year! I won't have lost all the weight that I wanted to by the end of the year, but I'm not going to give up!

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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
10/11/10 9:48 P

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Hope everyone is doing good!

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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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