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    KSGAMMA   44,377
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When life hands you lemons ... do more than grin and bear it.

Friday, August 23, 2013

Many of us in SparkPeople suffer from a debilitating chronic medical condition – many of us from several. We can sit back in shock or disbelief and wait for the end; or, we can get over the shock and disbelief and carry on as best we can. No one wants to be around a person who has given up or is angry and disillusioned – even ourselves. Life handed you lemons – deal with it as positively as you can. You will have bad moments, even days or weeks when your condition makes dealing with life seem impossible – we all have those times. It's how you recover and carry on that matters.

Maybe your mobility has been taken away or diminished in some way. “Use it or lose it” – remember that saying? Even with restricted mobility you can try to move. If you don't try you will never move again but if you try, perhaps you will and in most cases, the more you try and practice, the better will be your outcome. Maybe you find your stamina isn't what it used to be or your strength has weakened. Just as with mobility, work at it. You will never know what your limitations are unless you try to accomplish things.

When I was first diagnosed with my Congestive Heart Failure, I couldn't believe it. What was this? I already had Crohn's Disease with allergies and Rheumatoid Arthritis. I also had Obstructive Sleep Apnea and Restless Leg Syndrome. What had I done to deserve this? Why me? Why now? What was I to do? How could I go on? The doctors in the Emergency Department at the hospital simply sent me home with a prescription for a water pill, told me to get lots of rest and advised that I see my physician in the very near future. Was life as I knew it over? Was I to lose my independence? What would my relationship become with my new husband? Would I ever work again? Would I ever walk again unassisted?

I remember asking my Dr. what it was all about and being told my heart simply wasn't functioning properly – not how or why. When I asked I was told they didn't know and I should get lots of rest and take the water pills. I laid about for approximately a month until I was heartily sick of my situation and myself and with the worry on the faces of those nearest and dearest to me. Something had to be done and I had to do it. Physically I couldn't do much – heck, I needed help bathing and dressing myself. I wasn't able to do housework or work in my beloved gardens. But most of all, I wasn't able to accept the diagnosis and treatment for what ailed me.

I went back to the hospital and I answered their questions in a way guaranteed to get me notice and further study. It took a week of study and tests but finally the root cause of my troubles was identified – not the why of it for sure but the how of it and treatment was mapped out and planned. I had a condition known as Dilated Cardiomyopathy most likely caused from a flu virus entering and damaging my heart muscle causing fatigue and shortness of breath. My heart had become unable to pump enough blood back to the lungs to be oxygenated and it flopped about in it's efforts to do so. I was sent to expert Cardiologists and became part of a study at Toronto's Sunnybrook Hospital called the RAFT study. As such, I was given an extra wire in my heart when they implanted a Pacemaker/Defibrillator combination in my chest. It was hoped that this extra wire would help heal damaged hearts. In my case, my heart ejection refraction rate was 28% at the time of implantation and by the end of the 4 or 5 years study it had improved to 55% (with 60% being normal). By taking the upper hand and not accepting the limited prognosis I had been given, I had become pro-active and had taken a major role in my recovery. I was learning and teaching those around me that I'm a survivor and happy to be one.

I remember asking my doctor how much exercise I should have, how much of this I could do and how much of that I could do. I was dissatisfied with his answer of “whatever you feel you can do.” What advice was that? I wanted to know my limitations. I was looking to the wrong person for that answer. The answer was in me.

At first, I found I had little stamina, little strength, and I could do few of my usual routine things. Just getting myself ready for the day wore me out and sometimes defeated me. But, as time wore on, and I continued to try to successfully groom and dress myself and make the bed, etc. I was able to do it better, in less time, and with less effort. Each small accomplishment felt like I had made it over a hurdle.

Once I was able to do these tasks I moved on to others until I was able to walk to the end of my driveway, then the end of my street, then a few blocks away. I learned that I could do some of my housework and gardening but I had to learn smarter and easier ways. I learned to compensate and overcome.

I don't carry laundry baskets up or down the stairs. At times I'm fortunate to have a family member do it for me but when I find myself alone and in need of doing so, I bump the basket either up or down and once on the new level, use my legs and feet to move the basket rather than bending over and picking it up. I don't strain myself lifting what is now too heavy for me and I don't get as short of breath as I would carrying the load. I don't vacuum the whole house – I do a room at a time resting between. In this way, I don't wear myself out so that I can't continue and I don't get dizzy or sick to my stomach from fatigue. I don't weed all of my gardens in a day. I weed all or part of a bed and take a break. I don't always bend and stretch as I used to to do that weeding. I often sit on my butt and scoot along the edge of the garden reaching what I can from my sitting position to avoid vertigo and losing my balance. I can once again, with caution and care, go grocery or clothing shopping, go for walks, clean my house, work in my garden – those things that were once routine that had become major challenges.

During my learning process, I went through denial and grief. I experienced fear and anger, frustration and despair. But, as I tried more and more, I felt relief that my life wasn't over and my way of life wasn't over – it was changed and with a little effort from me, evolving into a manageable way of life. I became proud of my accomplishments, pleased with my efforts, excited to try more. As I did, so did those around me. As I said earlier, there are still moments and even days when my conditions make it seem impossible but I've learned that those times will pass and one of my favourite sayings has become “this too shall pass.”

There may be setbacks and you may find yourself starting the process over again. If so, remember what you already learned and make use of the resources you already dug up and used and make use of them again. In my case, I was diagnosed a few years later with Type II Diabetes, and later with Osteo Arthritis, and later still with Cough Syncopy. Now, almost 10 years after the Congestive Heart Failure diagnosis, the damage done to my heart has caused a further complication with time and I now have a leaky heart valve. My ejection refraction rate has once again dropped and wavers between 18 and 30%. I asked my Cardiologist to pursue the issue and not to just monitor it and I now have appointments at Sunnybrook Hospital to again see experts in their field – a Cardiologist and a Cardiac Surgeon – to see if the leak can be repaired with a clip, hopefully with a new innovative procedure but if not, with open heart surgery. It is my hope that if this repair can be accomplished, I will once again recover to a point that I can reach the quality of life I had worked so hard to obtain before.

I wake up in the morning and I'm reminded of a favourite saying of my husband's when asked how he is and he replies “at least I'm on the right side of the grass.” Not only am I “on the right side of the grass” I have an opportunity to see what I can do that day. I remind myself of what I have to be grateful for when so many others are so worse off than I. I hate having to start my day off with a daily weight check followed by about 20 some pills both medication and supplements, and with a shot for glucose control. I don't like it any better when I have to take more medications before my noon or evening meals and by the end of the day when I'm taking the last of my 60 some pills for the day and taking the last 2 shots of the day, I'm relieved it's over for another day. I have to take glucose readings throughout the day at random times making schedules difficult. I have to monitor the nutrients in my food, plan my meals ahead of time, and log what and how much I eat. I have to try and balance a diet that is good for my heart and Diabetes but that won't upset my Crohn's when it is active - a very difficult and complex task. I know, however, that without these inconveniences, my efforts to win the battle would be futile and it makes having to take these things bearable. They have become tools as I work my way through.

One of the best tools I have found is SparkPeople. Apparently I signed up in 2008 or 9 but I have no recollection of that and obviously didn't look into it fully. As I learn more and more and participate more and more, I am finding it an invaluable resource and tool. I track my glucose levels and my blood pressure levels, I track my nutrient intake and my exercise accomplishments. I read articles, blogs, and postings. I write blogs and postings. I watch videos, try recipes and exercises. I am sparking and helping others to spark and making new friends every day!

There is another important feature to making every effort to live life to the fullest. Attitude. It's fine to sometimes get depressed or upset over your circumstances but do you want to remain that way? Do your family and friends want to be confronted with your defeat day by day? No. Life has given you lemons, grin and bear it, but do more. Find some positives and give yourself rewards as you accomplish things. Look for the humour in a situation and laugh at yourself and with others. Realize that life goes on and how much you get out of it will depend a lot on how much you put into it. It may not be the life you have been used to but it can be a good one none the less.
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  Member Comments About This Blog Post:

TIME2BLOOM4ME 9/13/2013 3:15PM

    Hugs. I too get dizzy when I feel tired. I haven't meet anyone else who does. You have a great attitude.

Have you heard about hawthorne berry and cayenne. Dr. Richard Schultz said he rebuilt his heart with a herbal formula like that. He has an online site. Just an idea. I am not a Dr. or anything.

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BETHLOVESBIKING 9/11/2013 10:02AM

    You are dealing with your conditions with courage and SPUNK! Good for you with being pro-active with your doctors. You then got a treatment which helped you, rather than just going home and resting (rusting) away. (I always remember my little grandma from Missouri saying "I'd rather wear out than rust out.")

I also have some of the same thoughts and issues. I've always been terrifically healthy until I hit my 40's. My thryoid went kaput, both my knees went kaput (too much running in my early days with cheap shoes. They didn't know so much about "motion control" etc. in the 70's and 80's.) Gradual weight gain of 100 pounds over a 20 year period. Both knees replaced in the last few years.

One morning last May I walked 2 miles, not knowing the pollen count was high, or that somehow I had become severely allergic/asthmatic. (That's a new diagnosis.) Ended up at the doctor's office with difficulty breathing. Two breathing treatments later, the airways were more closed off and the doctor called for an ambulance. ER gave me several steroid injections so I could breathe again. Whew!

After a visit 2 months ago to an allergy specialist, I got answers. Testing showed a "lung age" of 78. I'm only 60. Partly due to inflammation, partly due to excess weight. Also learned that excess fat sends out not only inflammatory signals, but lowers the immune system. THAT was the motivation I needed to get going!

If I'm forbidden to walk outside until there's snow on the ground, well then I can go to the gym. Just found a spinning class that I love, love, love! It kicks my butt! Working out with weights. And the pounds are dropping. With each pound gone, I visualize the inflammation going down, my immune system picking up, and my lung age decreasing. Can't wait to go back to the doctor with a significant weight loss.

You have so many health issues, but it is INSPIRING to see you doing so well and doing everything you can!! emoticon

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PATIENTHAND 9/2/2013 7:03AM

    YES YES YES!!!!! Are you sure you are not my sister from another mister? While my issues are not heart related, we have lived very parallel lives and have similar thoughts. emoticon

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CHERIJ16 8/27/2013 10:05PM

    Lin you are truly amazing and you have an awesome attitude. I have a refrigerator magnet that says: "Attitude is everything. Pick a good one.". You are certainly a role model for that kind of positive thinking. Thanks for sharing your story and inspiring us.

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IRONBESS 8/26/2013 5:37PM

    Oh Lin, this was like reading about myself and certainly many others who've received an unexpected life-changing diagnosis with little explanation, help coping with emotions, or encouragement. Going through the stages of grief for the life you had and the future you planned, learning to pace yourself, finding alternatives to things you're used to all take time. Once over the shock and fear and grief, I see can actually appreciate a positive change: That is greater focus on the now and who and what are most important to me. Sure, there are occasional blue days, but many, many better ones. Thanks for sharing your story and insights. You' are spot on.

"The only disability in life is a bad attitude." ~ Scott Hamilton

"Focus on what you CAN do, not on what you can't."

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MINIMOE1 8/26/2013 12:01PM

    Lin - this is the third time reading this wonderful blog - your outlook & attitude with all you have to deal with is truly inspiring. emoticon

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HONOURIA 8/25/2013 8:33PM

    Wow Lin, this is an awesome blog - I read the one before it as well. You are one fantastic lady! Whoohooo!

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PSIMSON 8/25/2013 6:10PM

    What a terrific attitude! You are a real inspiration not only to your family and friends, but to many of us on Spark People. I hope that the cardiologist is able to help you again and you start to see some improvement in your health.

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VOLARI52 8/25/2013 3:36PM

    Lin this blog was very inspiring...thanks so much for posting it.....your positive attitude makes my little aches and pains seems so insignificant in hind sight.....keep up the good work....will have to remember that saying “at least I'm on the right side of the grass.” love it....take care.

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LYNCHD05 8/25/2013 3:35PM

    Lin, I have read your post almost daily I mour chat room and I knew you had problems but I had no idea the extent of what you are dealing with. You are unbelievably I spirational. Thank you so much for posting this blog. I am sure you will help so many.

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ALEXSGIRL1 8/24/2013 12:58PM

    lin you have an awesome attitude and a great spirit I wish you much luck on your new surgery you have a lot to teach others

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MARI-SERV 8/24/2013 5:05AM

    Bravo Lin emoticon

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KSGAMMA 8/23/2013 10:56PM

    Thank you all for your positive comments. My family and friends who have seen me at my worst and on my worst days may disagree that I am very positive. That is one of the main points I was trying to make - we all have down periods but it's our recovering and how we carry on that matters. Life is good, different than I ever expected mind you, but there are so many many positives. I am always so amazed at the strength that is within us and the untapped resources we have.

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CANDOIT54 8/23/2013 10:43PM

    Thank you for sharing this blog- you have been through alot but you are still so positive. 4KWALK suggested reading your blog and I am glad she did. It helped me alot

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4KWALK 8/23/2013 8:24PM

    You are a true champion, LIn. Only a champion can face what you face and still come out smiling. Only a champ can strive to overcome these health issues and deal with what you have to deal with each day, still with a positive attitude and a smile.
I am amazed and motivated by what you said in this blog.
Thank you for taking the time to write it.

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GRANDMASHUNGRY 8/23/2013 7:12PM

    You are truly and amazing person with such a positive attitude.
You must have great support from family and friends.
I wish you all the best.

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ANJAYS-JOURNEY 8/23/2013 9:04AM

    Way to go what an inspiring and uplifting blog, your inspiration amazes me, you have such a full plate but you carry on regardless. Thank you so much for the powerful blog. Take care my friend

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DRDOE7 8/23/2013 8:19AM

  Wow, you are dealing with a lot. But, doesn't it make you appreciate life more! I had congestive heart failure due to chemo from breast cancer. I found out I had the problem 5 yrs after my chemo, only by climbing a sand dune carrying a 20 lb baby. My ef was under 30% also. The pills rebuilt my heart and I'm back to normal. I'll never forget the day that I puller over to watch 2 eagles flying over me and I wondered why nobody else was appreciating them. I then realized how lucky I was that I was forced to appreciate life. I can now climb that dune (I still get a sense of fear when I look at it right before I climb.) I'm so glad you're making adjustment to get the most out of life even though you're dealing with so much. I remember those down days (my husband pulling me up the stairs because I was too weak to do it), but now I can just smile as I march up them on my own. Good luck with the new medical procedures. It sounds like you are such a positive person who is a real fighter. My thought are with you.

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