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A Guide to Posting in Your SparkTeam Forum

  FORUM:   Introduce Yourself to Team Forum
TOPIC:   brand new to Sparks People 


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KSGAMMA
KSGAMMA's Photo Posts: 1,830
7/17/13 6:20 P

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Ironbess - I meant to get back you yesterday. I did go to the site - it is the same organization but I don't remember a website like this or even if there was one! There is tons of great information on the site and thank-you again for re-introducing me to it! I last was in contact with them in 2005. That's a long time ago and lots has happened since with them and me. I'm glad they've been a source of information and comfort to you. Getting the diagnosis is indeed scary! So are some of the downs as you go up and down along the way. hang in there and take care.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 36 lbs. in 2012 & 13. Chart with SPeople


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IRONBESS
IRONBESS's Photo Posts: 490
7/16/13 4:26 P

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Lin, guessing this is the same one as it's based in the UK. Maybe it wasn't right for you. I don't think I'd have made it without the forum members though who helped more than anyone else could. I didn't know anyone who had my diagnosis, and I live a long way from much of anything so no support groups, plus my first cardiologist was not so great.

The CMA web site has free downloadable brochures with information about cardiomyopathy. There are also news articles on current research. What I found most helpful was the support of forum members who answered many questions I had, cleared up misinformation that is prevalent on the internet, and provided support and understanding while I went through various procedures, medications, and stages of coping with an unexpected and, for my husband and me a scary diagnosis (now that I'm stable and have survived almost 3 years, I'm feeling physically and mentally better). CMA also has a heart failure nurse specialist who occasionally answers questions posted in the forums. There were some US and Canadian members at the time I frequented the forum.

Edited by: IRONBESS at: 7/16/2013 (17:52)
In the great shipyard of life it helps to be a little dinghy.



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KSGAMMA
KSGAMMA's Photo Posts: 1,830
7/16/13 10:34 A

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Ironbess: Thank-you so much for the information on that web-site - I will go there and have a good look. At the time I was diagnosed, the only group I could find was an association based in the UK but there was little information.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 36 lbs. in 2012 & 13. Chart with SPeople


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CURRAHEE68
CURRAHEE68's Photo SparkPoints: (16,368)
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Posts: 568
7/16/13 3:56 A

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Welcome ladies. I hope all continues to improve. I seem to be doing better as I loose a few pounds and am hoping, and working, for even more. I was also an ICU nurse for a time, but switched to psych when I got too fat too work on my feet. And usually night shift! What a pain in those days. But am loving retirement.

I pursue my own unique life path, the right and ideal path for me. I am always given all that I need in order to fulfill my purpose here in the world.


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IRONBESS
IRONBESS's Photo Posts: 490
7/16/13 2:12 A

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emoticon

Marcey & Lin: I also have the floppy enlarged heart (DCM, probably viral cause), and a bivent pacer with ICD. Looks like there's several of us here.

KL: That's great news!

To anyone interested, a web site I found very helpful when first diagnosed is The Cardiomyopathy Association at cardiomyopathy.org/ There are people on the forums there who've been through everything from complete remission to heart transplant. Sometimes spouses or other family join the forums too. I learned more from the members at CMA than anyone else. They're so supportive. It was a blessing.

In the great shipyard of life it helps to be a little dinghy.



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LINDA!
LINDA!'s Photo Posts: 85,686
7/15/13 12:18 A

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Linda - Florida

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KSGAMMA
KSGAMMA's Photo Posts: 1,830
7/4/13 9:31 P

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congrats! Been there - it's a wonderful feeling..

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 36 lbs. in 2012 & 13. Chart with SPeople


 Pounds lost: 29.6 
 
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MARCEY88
MARCEY88's Photo Posts: 79
7/3/13 7:16 P

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so glad to hear that things are going ok, heart wise. tha things you learn about health at Spark People will help that old heart!


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KLWILSON2169
Posts: 35
7/3/13 5:35 P

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Good news my heart has taken a turn my 15-20 is now 40-45 so I am out of SCD scare! I also get to reduce two meds and take two others as needed. We are hoping this will help with the dizziness and headaches. Thanks for the prayers and emotional support. I feel I can do anything now... Now it is time for a great workout!


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KSGAMMA
KSGAMMA's Photo Posts: 1,830
7/2/13 7:30 P

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you'll be in my thoughts and prayers. Just the thought of a transplant and I break out in a sweat and here I am worried about possible open heart surgery to repair a valve! You take care of yourself and let us know how you are doing.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 36 lbs. in 2012 & 13. Chart with SPeople


 Pounds lost: 29.6 
 
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MARCEY88
MARCEY88's Photo Posts: 79
7/2/13 7:20 P

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i will be keeping my fingers crossed and saying a little prayer that all goes well with you. i understand how distressing this all can be. i was a cardiac care nurse for over 30 years, so i have some additional knowledge about the heart and its workings. nothing has ever frightened me so much as when i went into surgery to get that pacemaker and facing the fact that, still, i may need valve surgery. trust your doctors. they will be doing what is best for you. i'll be sending out positive thoughts for you.


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KLWILSON2169
Posts: 35
7/2/13 9:18 A

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Well my big day is tomorrow to see if my EF has improved, I have to admit I am a little nervous. At my last appointment we discussed starting the paperwork for a heart transplant. I am hoping by getting focused on weight loss will help in preventing me from actually having to have the transplant. I hit a few stumbling blocks on Sunday at a family gathering but I am back on track. I managed four days of working out last week and I am shooting for five days this week, small goals right??


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MARCEY88
MARCEY88's Photo Posts: 79
6/30/13 11:21 A

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thanks for your note. there is a lot of interest and support on this wed site. hope all goes well with your cardiac problems. we are watching my progress, i also still have problems with mitral valve reguretation and may need to do something about that further down the road. exercise is helping a bit and SP is helping to encourage me to exercise. i know how it feels to want to do something and not have the energy or the strength to do it. i just keep on prodding and gooing on the best that i can.


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BEBARB149
BEBARB149's Photo SparkPoints: (32,287)
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6/29/13 9:48 A

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Welcome Kimberly. I'm so glad you got that second opinion. Glad you decided to join us. Good luck.

Some people are always grumbling because roses have thorns. I am thankful thorns have roses. -- Alphonse Karr


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KSGAMMA
KSGAMMA's Photo Posts: 1,830
6/29/13 9:26 A

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our experiences and diagnoses are similar. I too have an ICD. My function improved from 28 to 55 so yes, there is hope. Unfortunately for me, I've developed a leaky valve and my function dropped and ranges again from 22-33. I have an appt. at Toronto's Sunnybrook Hosp. in Sept. however to see if this can be fixed. I am hopeful and also hopeful that I can return to a more active and productive schedule once more. It's hard to be so willing but so unable physically, isn't it. Hang in there and work at it. It's worth it.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 36 lbs. in 2012 & 13. Chart with SPeople


 Pounds lost: 29.6 
 
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KLWILSON2169
Posts: 35
6/27/13 8:45 P

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Hi I am Kimberly and I was a healthy 42-year old until I turned 43 on 12/21/12! Five days after my birthday I wound up in the hospital with CHF. The doctors were perplexed as they could not find a good reason for my left ventricle to decide to not cooperate putting my EF between 30-35. All in all I had a strong heart healthy valves nothing triggering why my heart was failing. The decided to all it viral cardiomyopathy stating a virus attacked my heart and was causing the damage. Next I was put on medication, double, tripling and adding more to the point it was a struggle to get out of bed and go to work, but I did it. At my four month marker on the highest dose of medication another echo was done and my EF was worse 15-20. I sought a second opinion from a more aggressive doctor and within a month I had a cardiac cath (normal) and then an ICD. I am now 1 month post-op and I am ready to reclaim my life, I still struggle with extreme fatigue but I found the sparklpeople book that I started yesterday and did a full workout yesterday for the first time in a while. As soon as I came home today I put on my workout clothes and got after it. They tell me in time I will be back to my old vibrant self, I can't wait!!! I have about 50 pounds I want to get rid of and never see again.. looking forward to it and I am glad I found this team!! :)


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MARCEY88
MARCEY88's Photo Posts: 79
6/27/13 7:50 P

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thank you for your message and suggestion. i appreciate your caring. good luck with your journey


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MARCEY88
MARCEY88's Photo Posts: 79
6/27/13 7:47 P

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thank you for your message. yes, we are doing water aerobics. sometimes that gets a bit too much for me so i just march in place....any kind of activity is better than nothing, huh? good luck with your journey


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KSGAMMA
KSGAMMA's Photo Posts: 1,830
6/27/13 10:58 A

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Welcome Marcie - haven't been on that long myself and I too stumbled on the site. Like you, I had a pacemaker/defibrillator imbedded in my chest when I was about 52 (60 now) and I have a not working so well floppy heart as well - Dilated Cardiomyopathy with Congestive Heart Failure. One of the exercises I find I am able to do and really enjoy is water exercise or Aquafit. I can even do a lighter version when I'm in heart failure - it's low impact with full benefit. If you like the water, you may want to check it out at a local pool. Good luck with your losing and getting exercise!

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 36 lbs. in 2012 & 13. Chart with SPeople


 Pounds lost: 29.6 
 
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BEBARB149
BEBARB149's Photo SparkPoints: (32,287)
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Posts: 2,108
6/27/13 9:30 A

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Welcome! I worked night shift for many years and know what you mean about the food. I also know that sleeping during the day can cause depression and it's very hard to change sleeping habits. You might find that it helps to get outside and walk twice a day. I used to walk to the store and buy an apple then eat it on my way home just to have a reason to get out and walk. Every step will make your heart stronger! Good luck.

Some people are always grumbling because roses have thorns. I am thankful thorns have roses. -- Alphonse Karr


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MARCEY88
MARCEY88's Photo Posts: 79
6/27/13 7:37 A

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I'm brand new to Sparks People and am very excited to get involved. I have already receive a lot of support and encouragement from the links. It makes me feel wolcomed but perhaps a bit overwhemed as i am not accustomed to working with computers at all.(l am not allowed to order anything from a computer site because the last time I ended up buying the same exact item three times.) But, hopefully that will get better With time and practice. I am 59 years old. I recently had a 'biventricular pacenaker' put in due to a flabby, inefficient heart. It was 'strong suggested' that I excercise and lose weight to improve stress on my overburdened heart. So here l 'm trying to make some improvemts, I joined a gym and my husband decided that he could benifit from some exercise too. So he is very supportive and attends exercise class es.with me. I am retired after working over 30 yeas as a crital care nurse on the night shift. (That presents it's own set of problems as the hospital cafeteria is closed at night making purchasing healthy meals impossible (thus promoting buying fast food for delivery and frequently snacking while working. Also working unusal hours makes it a bit more difficult to get exercise in...but with creativity and a little effort I got it in.). Now being retired and plaged with severe depression, it is hard to accomplish much more than lying around rhe house all day. I am hopeful thi program can offer some support and direction. It has been great far offering guidence and direction. It's an awsome site I can't believe I just sturpmbled on it. It has so many great features; I spend toń of time just wandering through the site trying to learn about everything that's going on. Looking forward to learning and losing Thank you for your support and encourgagement.



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