Friday, April 18, 2014
About a year ago, my husband joined the YMCA and in addition to being a labourer by day, playing on 3 hockey teams in the fall and winter, and 1 team in the spring and summer, as well as 1 baseball team in the summer, he started working out for an hour about 4-5 times a week. Several months ago, I too joined the YMCA. I had done Aquafit classes for about a year and a half a couple of years ago and missed it. I wanted more than 45 mins a couple times a week though, so I started doing my own program. I progressed from about 45 mins 3-4 times a week to 60 mins. aquafit exercise plus 30 mins water jogging every Tues., Thurs., Sat., and Sun., I am able. I now have health limitations that get in the way from time-to-time (Congestive Heart Failure Stage 4, Dilated Cardiomyopathy with 24% heart function, Crohn's Disease, Type II Diabetes, Sleep Apnea, and the list goes on.) Before my 2nd marriage, I was a single Mom for 21 years, did my own shovelling, gardening, decorating, cleaning, etc. We both work in my 13 perennial gardens, do our own cleaning and decorating, I have a pedalling machine I like to use, and he shovels tons and tons of snow in the Winter. We both enjoy the Y but I can truthfully say we have never lost weight or appear to have toned up from the exercise either at the Y or at home - we feel better but don't look any better. I have lost hundreds of pounds in my lifetime - and gained it all back plus more - I'm sure a lot of you can relate to that! My DH too has tried "dieting" as well without long term success. We heard from friends the dramatic weight losses they were experiencing - some of them already with a year without gaining it back.
They were on a 42-day diet from a health clinic here in Peterborough. There was a 3 week follow-up period as well. If you wanted to lose more weight, you had to wait for a number of months before starting again. We decided to give it a try. We went for the information session and then went in to be weighed and measured for inches around as well as overall body fat. I was also given a number of other tests because of my health issues. My DH lost 50 lbs and I lost 30 lbs.
I got sick however while on the diet. I got heck from my Nurse Practitioner and my Cardiologist for going on it and they blamed my illness on the diet. I think it was something else entirely. After losing the first 20 lbs., the insulin I can regulate myself had dropped from 100 units a night to 50. I went to the Nurse to ask if any of my other meds should be cut back because I was feeling dizzier than usual, nauseated, thirsty etc. She said no, too soon but took blood work anyways. As it turned out, I was right - my kidneys were failing from too much medication for my Heart and Diabetes. It's taken until about a month ago to finally get my med doses finalized to lower levels. The Nurse and Cardiologist blame the diet - I blame them for not listening to me when I told them my body was telling me I was over medicated.
Another complaint of the Nurse and Cardiologist (and some concerned friends on here) is that I wasn't eating enough calories while on the diet (5-600 a day). My Nurse wanted me to eat 1000 a day saying I couldn't lose with any more with my metabolism and my meds. This is still a lot lower than SP recommends. I told her with all the diets I had tried in my lifetime it was my experience that if I eat more than 5-600 cals a day, I cannot lose weight. This was also true for my Mother and still is for my youngest Sister. I took the Nurse's advice though and guess what? I've gained 20 of my 30 lbs. lost back!! My Nurse is usually sensible but now wants me to get that weight back off, but to eat no fewer than 1000 cals a day, keep my sodium levels to 1200 a day (no problems with 1000 or fewer cals a day) and to drink lots of water but to keep in mind I can't have more than 5-6 glasses a day because of my heart condition. Ya, like that's gonna work. I can't lose at 1000 cals a day and I can't drink lots of water but have only a little at the same time! So, I can't see it happening. By the way, my DH was also overmedicated for his blood pressure and started passing out on me. Again - due to over medication not the diet. He has also gained a fair bit of the 50 lbs. he lost back.
After the 42 days of the diet, we were to slowly add foods back to see what ones caused us to gain weight and to eliminate them. That worked for awhile but after a few weeks we got a bit more careless. In gaining back the 20 lbs., I upped my intake as the Nurse suggested to an average of 1000 cals a day, some days more and some days less. Every time I go over the 1000, I go over my sodium limit too. We ate out about 1x a month unless away from home for medical appointments and had to eat out more. If those appointments involved an overnight stay in a hotel, we often brought our own food. I added a slice of low fat cheese a day, a couple of eggs a week, light dressings on our salads, pasta once a week, and had potatoes and bread products and cereal occasionally. To be honest, my DH and I both bought a treat once a week for some of the evenings (he usually a bag of chips and me a container of Orange Sherbet) but pretty much we stuck to the main part of the clinic diet of lean meat, veg, fruit and a single melba toast each of 2 meals a day. My DH will no longer eat the Melba Toast and I don't think he ever will again, lol.
After the first 20 lb. loss on the original clinic diet, I took most of my clothes in and those that I couldn't, I replaced with new ones. They had still fit nicely at the 30 lb. loss. Now, with 20 lbs gained back, my clothes are too tight and I'm uncomfortable. There were things about losing the weight I hated - loose skin and my tummy. For some reason, I didn't lose ANY weight off my tummy. Well, that's not true because I did lose inches but when I look in the mirror, the roll of fat is larger than it ever was and with the 20 lbs. back on (even though I've weighed way more than that), I've never seen it so big! I liked that after the first week on the clinic diet, we were never hungry between meals but I craved a breakfast which has always been the first thing I did in the morning after taking my shot and my meds. While on the clinic diet, we were to do no more than the equivalent of a 30 min. walk per day for exercise. A minus is that if we did more, we would burn off muscle and not fat while on this diet. I modified my aquafit exercises but missed my full routine dreadfully. My DH cut way back on the weight lifting and the treadmill.
With some med changes I managed to lose 18 lbs. in 2012 which I kept off. In 2013 on the clinic diet I lost 30 but gained back 20 so only lost 10. That's a total loss of 28 lbs. Well, here we sit, bigger than last summer and because we became used to the smaller size, we are more uncomfortable than ever. As I said, we decided to take the plunge again and re-take the clinic diet with the hopes that we will continue as they intend in the follow-up and keep the weight off. I hope also, that when I lose weight again, if I tell my Nurse I think I'm over medicated, she will listen. If she does not however, I now have to see a kidney specialist and he keeps track of me through regular blood tests so that should be a help. My DH has once again cut back on the weight lifting and the treadmill and I've cut out the water jogging and modified my aquafit exercises. My DH starts summer hockey in a few weeks so he has decided to do a 21 day diet. I'm hoping I can stick it out for the 42 days but it will be hard watching him add some foods back in. We will have completed our first week on Monday and so far we are losing but feel good.
We are both optimistic and are looking forward to what we hope will be a healthier way of life in going back to our regular exercise and sticking to healthier food choices. There is more to dieting than food. There is exercise and the need for a lifestyle change. One of those changes is mental. It is my hope that in adopting a permanent lifestyle change, we will once again resemble the self-image we each carry. My DH unconsciously thought of himself as he was as a Sergeant in the Army when he was fit and only somewhat overweight (according to insurance companies and diet gurus). I picture myself as I was in my early 20s after a good loss with Counter Weight (the old Canadian version of Weight Watchers) when I too was fit and somewhat overweight (again as thought of by others). I could buy my clothes in regular sizes, not oversized. Every time I pass a plate glass window or a mirror, I mentally do a double take and say to myself, my gawd, is that what I really look like?
Friday, February 21, 2014
HOW DO YOU TEACH YOURSELF TO EAT NEW FOODS – WHEN YOU HAVE SERIOUS ISSUES BOTH WITH THE FOODS AND WITH BAD EXPERIENCES?
Today I found a Forum that is new to me – Diet and Nutrition - after noticing the "How Do You Teach Yourself to Eat New Foods?" topic listed on the side of my screen under "Message Board Hot Topics." I read all of the entries with great interest. I must admit I'm not anywhere near as willing to try new foods as those who posted seem to be. I was going to post why I am afraid/reluctant to try new foods but as I started to write (and I must admit get things off my chest, lol) I realized it was much too much information for a Forum and I switched to writing a blog with a note in the Forum that I have written such a blog. Let me explain my situation as it relates to foods.
When I was a child, my mother insisted we eat all of our vegetables. I was the third child and after dealing with me she gave up on what had worked for my 2 older sisters - if they didn't eat their vegetables at dinner, they got them cold for breakfast the next morning! Both at dinner and at breakfast I would gag over them, complain of stomach pains and later vomit. My parents put it down to stubbornness and contrariness. In addition, I was labelled a hypochondriac. But, as mentioned above, and fortunately for me, Mom eventually gave up on forcing me. I was still urged to eat them and sometimes given ultimatums but no longer force-fed or forced to eat them for breakfast.
I grew up believing that I disliked a lot of foods. I knew I wasn't a hypochondriac - my pains and vomiting were real. What I learned at the age of 40 - yes it took 40 years - was that I was most likely born with Crohn's Disease. The way Mom cooked vegetables, I should have been able to process them rather painlessly as they were mush, but as I described earlier, they were still too much for me. For those of you who do not know what that is, a quick summary is that it is an auto-immune disease affecting part or all of the digestive system from mouth to anus. There are periods called flares where eating almost anything is painful causing bloating and gas and pains strong enough to be suspected to be gallbladder or appendicitis attacks. There are also periods, sometimes for years, where there are no symptoms when the Disease is in remission. Every individual with this incurable Disease is an individual and their form of the Disease is just as individualized as they themselves are. Some people only have the disease in the small bowel, some only in the large bowel, still others in both bowels. More rarely some are also affected in the Duodenum, stomach and throat. There are still others who have it all the way through. It is a difficult Disease to diagnose.
I personally have Crohn's Disease all the way through my digestive tract – mouth to anus. I was first hospitalized as an infant after long periods of loose bowels and crying in pain. As the years went on, similar bouts continued and during such I was unable to eat much. I was tested several times for gallbladder and checked out for appendicitis. I developed a number of allergies as a teenager, and in my early 20s I had 4 miscarriages. I was always heavy but would lose a lot of weight when I would go through one of these sick spells. My size may have complicated making a correct diagnosis more difficult than usual. The majority of people who have Crohn's are underweight and not heavy. I get mouth ulcers. I also get ulcers in my throat and stomach, duodenum, and both bowels. When in a flair, a portion of the digestive tract will become inflamed and will have ulcer-like sores where portions of foods being digested can become stuck in and the inflamed areas are unable to perform their usual function affecting the digestion of foods. Sometimes the inflammation becomes so bad that strictures form and can partially or totally block parts of the system so that food is unable to pass through causing severe pain and vomiting when a person with the Disease tries to eat. There is no cure and researchers and medical professionals do not know how or why people get Crohn's Disease. Treatment is usually with diet, medication, and surgery.
I had gone for 2 years without eating solid foods before I was finally operated on. I had been seeing a specialist whose specialty was Crohn's but he had misdiagnosed my condition as a "smoker's ulcer" which is in the duodenum. When he sent me to a surgeon to have what he thought was scar tissue removed from my duodenum I was again misdiagnosed with Pancreatic Cancer but with further tests he realized I had Crohn's Disease. During the process of examinations and tests during that 2 years I only managed to lose 55 lbs. A lot but not as much as you'd expect eating only liquid meal replacements. I was severely malnourished and almost died. My legs were bowed, my stomach was distended, my hair was limp, my nails discoloured and fragile and I was often disoriented and very weak.
That was 20 years ago. I have learned much about this Disease and pretty much have been able to keep it under control with medication and watching what I eat. What causes me the most pain and discomfort are all those foods my mother tried to force me to eat and I thought I disliked. I now know that I didn't dislike them so much as they hurt me. They still do so I rarely eat them.
There are many other foods, however, that are not vegetables that I am reluctant to try. Some have affected me in the past the same as vegetables but others, I'm not sure of the reason. Reading other comments in the Food and Nutrition forum, I think some of the problem may be with texture. For example, I like the taste of turnip and I've tried it cubed and mashed but I can't get it past my gullet even if I try to hide it in a stew or a soup. My Mom used to boil the heck out of everything. Chili was hamburger in a sauce with the shells of the beans - cooked so much they had totally come apart. All vegetables were mush that felt awful in my mouth and I found very difficult to swallow.
Another thing Mom used to do with things I didn't like was try to hide them in other foods such as putting cauliflower or other mashed vegetables in with the mashed potatoes, etc. I used to get furious and wouldn't even eat things that might hide others - when I would have one I could tell what was hidden in it by the different textures and tastes. To this day, I abhor foods mixed together. I occasionally crave a bowl of soup or of stew but after eating half a bowl I start to get nauseated and it will be many months before I crave them again.
This is such a strong feeling that I can't stand my different foods on my plate to run together and get mixed up. I may choose to have a bite of potato and meat together but I will not eat them if they have become mixed together on my plate. I love making a breakfast bagel with an egg, bacon bits, and a slice of cheese in a toasted bagel. When I have bacon and eggs, however, I do not like when the yolk of the egg runs all over the plate mixing with the bacon or my toast, nor do I like an egg cooked with cheese on it. Same foods in the breakfast sandwich but for some reason my I can tolerate it one way and not another. I love buffets and being able to choose my own foods but dislike those where they have a server behind the display putting items on your plate for you. They inevitably pile one food on top of another, sometimes a hot item on a cold one, or get beef gravy on a piece of chicken, etc. I've learned to like certain combinations together but seldom vary from what I would normally mix in such things as lasagna, spaghetti sauce and pizza but as a rule, casseroles, soups and stews are rare in the meals I prepare.
Basically, for me, the things that always hurt me are nuts, many vegetables or fruits that are seeds (although unless I'm in a flare, I can eat peas, corn, strawberries, poppy seeds and raspberries which is unusual), all melon or gourd foods, fatty meats, dark meats, deli meats, multi-grain cereals and breads, rice (unless over-processed in a canned soup) and all legumes. Sometimes dairy products hurt but when they do I can usually manage with Lactaid. When I'm in a flare anything that is higher than 2-3 gr of fat causes nausea so condiments and meats, etc. I can pretty well always eat pasta, potatoes (without the skin), carrots, mild cheeses if low fat, and most canned fruits (they are broken down somewhat and I can digest them then), most skinned fruits, and plain white bread. I can eat potatoes without the skin, celery and rhubarb if I peel the outside off, and bananas if I dig out the core so I'm not eating the tiny seeds. Most cream sauces, oil based dressings, vinaigrette dressings, and gravies made from real fat drippings make me nauseous. It is recommended that people with Crohn's eat a well-balanced diet and follow Canada's Food Guide. That is pretty well impossible when in a flair. When I had my surgery 20 years ago, part of it involved a by-pass in my duodenum so there is always a diseased part of the organ there and I am never completely in remission. I eat "healthy" when I can and less healthy when I have to.
As the years moved on, I developed other conditions. Two of those are greatly affected by the foods we eat. About 10 years ago I collapsed with a serious heart condition called Dilated Cardiomyopathy. The medical professionals believe this was most likely caused by a flu virus many years before but that had taken all that time to do it's damage until my heart could no longer function as it should. With this condition, I also have regular bouts of Congestive Heart Failure due to the heart's inability to work as it should. A couple of years after the diagnosis I had a combination Pacemaker/Defibrillator implanted in my chest. The Heart Failure is not only a symptom that the heart is not functioning fully – other organs are affected as well. With the build-up of fluids, the kidneys cannot function as efficiently. With the Cardiomyopathy, I am not getting enough blood to my lungs to be oxygenated which means my organs and brain do not get enough oxygen affecting their functioning. The excess fluids settle around the heart and in the extremities causing edema (swelling) and you become out of breath, lack stamina, and gain weight. In my case, I can gain up to 10 lbs each time the fluids reach the level of Heart Failure. The damage also caused a valve in my heart to leak. What little blood I could pump out of the damaged section of my heart to go through to another and on to the lungs, would gush back into the damaged part with the valve leaking. I was in Heart Failure more often than not. I was constantly out of breath (sometimes even at rest), I felt like I was drowning when I laid down, I was exhausted and had very little stamina. When the leak became critical, surgery was required. It was determined that Open Heart Surgery would be too dangerous for me due to the condition of my heart – it functions at 24% right now. A new innovative procedure was successfully performed about 6 weeks ago and even with that low function, I feel better than I have in years. The leak was repaired but the Cardiomyopathy cannot be but I still feel so very much better. (My husband says he has a new woman. Unfortunately I found out I can once again manage to vacuum the house – poopy). For your heart, it is very important to eat a balanced diet rich in fresh fruits and vegetables, low in fat and low in sodium.
A few years later again, I was also diagnosed with Type II Diabetes. Since the Diabetes, I have had issues with one of my eyes and develop from time-to-time blisters on the retina and I have lost part of the vision in that eye because of those blisters. My eyes tire easily and I usually see double – there is a light shadow beneath everything I read. It is very important to again eat a balanced diet rich in fresh fruits and vegetables, low in carbohydrates, and low in fat. I have several other chronic disorders but they are not affected by foods in the same ways (Osteo and Rheumatoid Arthritis, Obstructive Sleep Apnea, Restless Leg Syndrome, and Cough Syncope).
My diet is rather difficult. I eat fresh fruits and vegetables and such for my Diabetes and Heart until my Crohn's says no way - Stop! – with bloating, pain and sickness. Then I eat more processed and broken down foods that my Crohn's can handle. Those foods tend to have a lot more sugar and salt, and sometimes fats as well, causing my Diabetes numbers to rise or for me to go into Heart Failure as I retain too much fluid.
To top it all off, I have a number of food allergies which is often common with Crohn's Disease. I can now manage to eat strawberries, salmon, tomatoes and citrus fruits that I am allergic too if I take a long acting extra strength anti-histamine every day, and as long as I don't have each of them the same day or one or two of them a couple of days in a row. I cannot eat mushrooms or anything that molds (eg old cheeses) or anything that ferments (eg alcohol, condiments more than 1-2 months old, juices open for more than a few days etc. I can't even have foods cooked in alcohol – people say it burns off but I still get a strong reaction from it. These things cause anything from disorientation and confusion to convulsions with a general sick feeling. Unfortunately, it isn't always that straight forward. It has been my experience with both the Crohn's and the allergies that it isn't always the one item you have eaten that causes problems but combinations. You may have the same meal 2 days in a row and it didn't bother you on day 1 but on day 2 you are bloated and in pain or break out in a rash or have a terrible food-related headache. You most likely had something at lunch that interacted with something in the dinner meal causing the reaction. It can be very difficult to track sometimes.
I take 60 pills a day (prescription and supplements and over the counter medications) and have 2 shots a day and another monthly. I take a lot of supplements. With Crohn's Disease, when a portion of the bowel is diseased or has been surgically removed, it is impossible for that part of the bowel to function and nutrients are therefore often lost. Supplements are usually taken or administered in a shot so that the body can absorb what it needs. The surgery I mentioned previously, not only involved the by-pass but also the removal of part of both bowels where they meet at the ilium, the ilium and the appendix. Some of the pills I take are capsules and I find that the plastic tube they are made of often give me indigestion even though I am on the highest dose of one of the strongest pills for such. I have to be careful to take them with lots of water and/or with food so timing is important. I don't want to find myself having to have an extra meal or snack which would affect my glucose levels. Also, I have to limit my fluid intake to about 5 glasses a day because of my heart condition so I have to be sure to take those pills when I am drinking water to take other medications. Therefore, I usually have 4 glasses of water a day - one each time I take my meds at breakfast, lunch, dinner, and before bed - and a 5th during the evening when I am usually sitting reading or watching TV or am on the computer. The limited fluid intake and the diuretics I am on cause extreme dry mouth and throat making swallowing difficult and I often cannot finish some foods because they have become too dry for me to swallow after chewing for a while. This interferes with the diet too.
A lot of medical professionals get very frustrated with me. Each wants me to follow the diet most advised for the condition they are treating (eg low sodium and heart smart for my heart, and low carb and fat for my Diabetes). Dieticians and my Nurse Practitioner who deal with all of my conditions and try to help me manage them as a whole are often at their wits end trying to help me come up with a good diet when there are so many issues. I have had several dieticians simply tell me they can't help me at all and I should just eat what feels right and that doesn't hurt or cause a breakout of some kind. When I am hospitalized, I must bring in foods that I can eat. If they put down the Crohn's, the Heart condition, the Diabetes and the allergies on the diet/nutrition form, I get a visit from the hospital's dietician asking what I can eat. Because their food systems are now out-sourced there is little to nothing they can give me and they can never replace a meal once delivered as there are no longer kitchens or food sources. Hospitals take each of the conditions and dietary needs to extremes in fear that there will be some reaction from one while in their care (eg no salt if on a low-salt diet, no fruits or vegetables or fats if have Crohn's, and no sugar or fruits if Diabetic). At home you have to have some things from time-to-time that are off the recommended diet and you may get away with it but they do not want to chance it.
Family and friends find it difficult too as one of the most popular social activities is to share a meal or snack. We seldom eat out, seldom eat at friends' houses, and seldom travel. When I visit family or go away for a weekend, I have to take foods with me that I know I can eat because I know there will be a lot of foods where I am going that I will not be able to have. I have a brother-in-law that has deliberately put items in what is cooking that he knows I cannot have sure that I will never know the difference – wrong! and dangerous! When we do eat out, I usually have a single item on a menu pre-picked in each restaurant we go to because I have tried it before without harm and because through research I know the nutrient values in the meal. When we eat with friends, they have to be very good friends who understand I am not criticizing their cooking or "just being picky" when I do not eat everything presented.
When my husband and I first started seeing each other, he had trouble understanding my eating issues. As time went on, and he witnessed just what can and does happen when I have things I definitely know I shouldn't he has a better understanding and helps ease the path when he can. Fortunately, we like and dislike many of the same things and he likes the way I prepare foods. There are always exceptions and neither of us minds if one is having their favourite food while the other does with something else from time-to-time.
There are many times I would like to expand my diet. Will I try new foods? Can I get past the changes in texture, the different tastes, chance pain and discomfort, or not? Somehow my daughter grew up loving vegetables. I hope that my grandson too will try more different foods. My daughter, grandson and I all have a sensory problem with the taste and feel of things in our mouths. My daughter seems to have pretty much overcome hers. Mine is compounded with digestive issues and allergies. My grandson is only 5 so hopefully he too will overcome. He eats very few sweets and prefers vegetables and fruits but very little variety in either.
Some of the suggestions in the Forum topic were similar to what my mother did with me. They were, however, recommending that the person with the issues make the changes and not have them secretly made for them by another. Perhaps that is the difference and I can apply that logic and try something new for myself … but not tonight … I'll have to wrap my head around this and psyche myself up. I know this sounds silly to some but to others this is serious business and not to be taken lightly.
Tuesday, January 21, 2014
TO LOSE A PET … We recently lost our girl Chloe, a beautiful grey and white female cat. We never knew her original name or age. She was a rescue cat. We were reading the papers one day and there was a story of a cat that had been tied up in a plastic bag and tossed at the doors of the local Humane Society! It was that cat that we adopted a few days later. She had a lot of emotional/psychological problems after her experience. The Society thought she was about 3 years old but our Vet thought more like 6. We had her for 10 years so she was most likely 16 when her kidneys and hind legs failed her. I believe that her former owners must have been moving and were unable or unwilling to take her with them because every time suitcases came out, or boxes were packed, or furniture moved, she would get quite upset and actually get sores on her back. Garbage day with plastic bags was a nightmare for her.
We first got Chloe as company for me when I had to quit work and was at home alone all day and ill. It wasn’t long however until she decided she was my DHs cat rather than mine, lol. She would wait for him at the top of the landing by the side door when it was time for him to come home and follow him to the rec room while he fed his tropical fish as soon as he came home from work. In the evening she would get up off her spot on the couch and go to whatever room my DH was in and beg to get up on his lap for a brushing or just petting. Later, she would wait again at the top of the stairs for him to come up to bed and then race down the hall to get to the bedroom before him. She would beg to be lifted up on the bed and when there, would snuggle down in beside my DH kissing his arm, rubbing her head on his side, and nudging him if he dared to fall asleep before she’d had her fill of attention.
As for me? I was the one who fed her and cleaned up after her. She would ignore me for most of the day unless she desperately needed or wanted something. Even at mealtimes she would ignore me. If I didn’t produce a meal however, when my DH would come into the kitchen she’d howl and carry on letting him know how much I had abused her. At bedtime, she would get in a real huff when I came to bed interrupting what she thought was her time with my DH and would only stay up on the bed for a few minutes after I’d settled in – no skin off my nose, lol. It wasn’t so much that she didn’t like me, she acted like she was in competition for my DHs affections. Sometimes she’d carry on so much it was just plain comical.
But, love me or not, I loved her dearly. When we had to have her put down I thought my heart would break. The first few days were the worst but even now, a month later, I still listen to see if I can tell where she is, and she isn’t. Out of the corner of my eye I’ll see something on the couch in my peripheral vision and glance over expecting to see Chloe curled up sleeping peacefully, but she isn’t. When I come in the door, I want to call out that “we’re home Chloe.” The same when we leave, I want to call out that “we’re going out but will be back soon,” but she isn’t there to hear. I still find myself standing back from the counter where her bowls sat on the floor in front of as if I’d put my foot in them if they were still there, but they’re not. My DH and I both walk so carefully down the hall if up in the night so that we don’t trip over her, but she’s not there. I miss the times she would get into my lap and let me brush her or pet her, but she’ll never do that again. She loved having me use the electric massager for our backs on her back. If we turned it on, she’d come running from wherever she was in the house, but no more. She was so much a part of our lives it will take a long time to get over the day-to-day missing of her. We’ve lost a member of our family and she will remain in our hearts and be forever thought of fondly. We’ll laugh over her idiosyncrasies and her jealousy, but we’ll cry over the hole she has left in our hearts.
Wednesday, November 06, 2013
On 23 August of this year, I wrote a Blog entitled “When life hands you lemons ... do more than grin and bear it.” In that Blog I explained that I have a number of medical conditions including Crohn's Disease (with Rheumatoid Arthritis pain and with allergies), Obstructive Sleep Apnea, Restless Leg Syndrome, Dilated Cardiomyopathy (with Congestive Heart Failure), Type II Diabetes (with eye issues), Osteo Arthritis, and most recently, Mitral Valve Regurgitation (a leak in the Mitral Valve in my heart). I stated that “When you work on developing a positive attitude and on building skills to compensate and work around your issues that there may be setbacks and you may find yourself starting the process over again.” and, “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.” The following paragraphs are also from that Blog:
"One of the best tools I have found is SparkPeople. ... 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."
Also in that Blog, I mentioned that I had appointments at Toronto's Sunnybrook Hospital to again see experts in their field – a Cardiologist and a Cardiac Surgeon – to see if the leaking valve can be repaired with a clip, hopefully with a new innovative procedure but if not, with open heart surgery. When my husband and I met with the Sunnybrook Cardiologist we learned that, in his opinion, open heart surgery would be dangerous for me because of the damage already done to my heart by my Cardiomyopathy. He said that although the clip procedure may not give me 100% positive results, it is less invasive, less dangerous, and if I qualified for the procedure, most likely the best option for me. He explained that I would need to have tests done to determine if my heart valve is in a condition that they can fix with the clip. If the tests show that it is, I would then go on a waiting list to have the procedure done. It is so innovative that the Government does not yet fund it and the Hospital relies on donations to their Foundation to fund the $36,000 Procedure. He also explained that there were no guarantees on the outcome and that it would not heal the previous damage done to my heart by the Cardiomyopathy. I was aware that it wouldn't heal the heart as a whole and was therefore not surprised. He also said there was time for me to be on a waiting list and we
need not worry about that.
We were unable to meet with the Surgeon that day after all and would have to reschedule. We left the Hospital with some of our anxiety relieved however and with the hope that this latest issue could possibly be taken care of.
The tests were scheduled for a Thursday and a Friday in late October. We booked a hotel room for Wednesday and Thursday and off we went once again to Toronto. On the Thursday, we arrived at the Hospital at 7:00 am and I had an Angiogram (also known as a heart catheter) up through my right wrist to my heart and learned that my arteries have no blockage and I would not require stints. Good news! While they had me prepped they decided to go up the veins from my groin to my heart to measure the pressure in my heart. I'm still not really sure what that was all about. Recovery was worse than the procedures. You had to lay flat on your back for 3 hours with a sandbag on your groin and a heavy bracelet on your wrist to prevent internal bleeding. I never lay on my back unless I have to for my Crohn's gut pains. It was then I remembered why. I have arthritis in 3 spots in my spine and oh was it painful to lay there not moving for such a long period of time. I will admit that in the last 1/2 hour, I didn't take it well.
On the Friday, we first met up with Sunnybrook's Head of Cardiac Surgery. He was surprised at my age. I have just turned 60 and apparently most people with this condition are in their 80s. He said to us “If you were 80 and I could give you a couple more years, that would be great, but you aren't 80, you are 60.” He explained that the clip procedure we were hoping would be the answer for us has never had a 100% success rate and that it may not be the best option for me as it is only a short-term fix. I was stunned. I had been so hopeful and to my way of thinking, this could change everything.
After our appointment with the Surgeon, we went to the Short Stay Clinic and I had the final procedure scheduled called a TEE Procedure. They first took an Echocardiogram in the usual manner and then with a General Anaesthetic, took another but from inside the throat where they could do the ultrasound right beside the leaking valve and get the best picture of it. Sunnybrook is a teaching Hospital and while we were waiting for the Anaesthesiologist, the doctor who was to perform the Procedure explained to interns what the procedure is all about and about my condition in particular. He described my heart as being in Stage 4. Stage 4, what was that? I didn't get an answer from the Doctor so I Googled it after we had been home for a day.
I must say, I was terribly glad I was at home alone when I read what Stage 4 meant. There are 4 stages of Congestive Heart Failure and 4 is the final stage before the end. It also said that there is progression from Stage 1 to Stage 4 and hope if caught in the early stages but that there is never any going back from one stage to a lower stage. I knew that the ejection refraction rate for my heart - the function of my heart - was only 28% but close to the end? Yes, I have trouble with mobility, catching my breath, lack of stamina, inability to walk very far, and tiredness to the point of fatigue, etc. but I still go to the pool and do my Aquafit exercises, not as rigorously as I once had but still spend an hour plus working out usually 4 times a week. Although I need frequent rests, I work in my garden and in the house. There must be some mistake. I'm no healthy specimen but I don't see myself as on the way out. Just think of how healthy my heart must have once been to withstand the flu virus that attacked it and caused the Dilated Cardiomyopathy. I was anxious to learn the results of the TEE Procedure and what the recommendation would be from the two Sunnybrook specialists and now I was frightened and anxious about the condition of my heart.
I had an appointment scheduled for the Wednesday with my Nurse Practitioner (we don't have a family physician although she works with one). I told her of my various appointments at Sunnybrook and also about hearing my heart was in Stage 4. I explained that I hadn't known what that was and Googled it and asked her what was what. She was surprised and told me that since my first diagnosis almost 10 years ago, my heart had been in Stage 4. I'm sure I had a look of horror on my face. She reassured me somewhat by telling me that the earlier prognosis for me was 6 mths to 6 years and now it was 9 plus years, that I had beaten the odds. She went on to say I was not a textbook case as I was much more active and resilient than most people with 28% function and that she felt that was mainly due to my determination and good attitude. She said she felt I would get this leak fixed and that I would show everyone that it is indeed possible to go back from a Stage 4. She also did a quick review of my other conditions and how well I was managing those even recovering quickly from the early stages of kidney failure this past summer.
After my appointment, I sat in my car and had another good cry. I thought back to the pain and anxiety of the last several days and how miserable I had felt. Not only was I miserable but the people around me were feeling miserable – misery does love company. I gave myself a mental shake and decided enough was enough. Nurse Joanna was right. I've beaten the odds before and I can do it again. Fixing the valve in my heart may not heal my damaged heart but it was healing itself due to a study I had been in the first 5 years of my illness, again at Sunnybrook Hospital. In that study, I was given an extra wire in my heart when they implanted an ICD (pacemaker and defibrillator) in my chest. It was the hope of the researchers that this extra wire would help heal the heart. Before the leaky valve, my function had gone from 28% up to 55% and 60% is considered normal. I am not a textbook case. This wire is still in my heart and after the valve is fixed perhaps it will do it's work again.
I realized that as long as I was miserable and making others feel miserable, I felt the full weight and magnitude of my conditions and if I wanted any relief and any quality of life, I would have to put a check on my current behaviour and attitude and re-start being thankful for what I have and an attitude that looks for the good in situations. I remembered my previous Blog about life handing you lemons and I re-read that.
It's now the following Wednesday. I am still anxiously waiting to hear something from Sunnybrook but I once again wake up in the morning thankful for what I have, even with the creaking bones, sore muscles and sluggishness. I remember that I will soon limber up as I get on with my day and I re-check the calendar to see what lies ahead for me that day. By the time my husband is up and about before 6 am, I have indeed limbered up, I've taken care of any low glucose levels if any, I've got a smile on my face and I am confident I know what chores and appointments have to be taken care of that day. As he likes to say, “I'm still on the right side of the grass” and I'm glad of it. My daughter and my grandson might phone or drop in that evening and I would get to visit with them. I might have a session set up with a friend or two to meet for a visit. It may be one of my husband's days off work and we might do something together. I know I'll have a medical appointment or two. It might be one of my days to go to the pool and exercise, something I love. It might be a day beautiful enough to be outside working in my garden or going for a short walk. There are so many possibilities and I let myself forget that. These things are things we often take for granted but for me they are major accomplishments and mean a lot to me.
My life has changed so much with each new setback but I've learned that a positive attitude goes a long way to making living with those setbacks not only bearable but that there is still joy and pleasure in my life. My husband has been both a rock and a teddy bear and I don't think I could have made it through all this without his love and support and the support of other family members and friends - both here and at home. Now, if I could just get this leak fixed, and soon!
Wednesday, September 11, 2013
The following message was sent to Motivation Station (weekly/monthly challenges) SparkTeam by one of the Team's Leaders. She took a quote from Spark's Secrets of Success which really hit home for me.
What a great way to start each day!
I can do anything for one day!!
“Every morning when I wake up I say to myself today I'm going to stick to my diet only for one day!!! I can do anything for one day!!! I don't think about how much I have to lose I just say one day at a time. And guess what all those one days add up and BOOM your at your goal!!!” emoticon
- Submitted by ABONDGIRL 4/20/2013 in Getting Back On Track
When I read this message it was like a light bulb going on in my head – this is so simple, and so true! I wonder why I too didn't think of this. In articles I have read on SparkPeople, and elsewhere, it is said that goals can be reached much more easily if they are set at an attainable level. In other words, do not make your weight loss goal to lose 50 lbs. but rather to lose 10 lbs. in so many days. Once that is achieved, it is recommended that another attainable goal be set which could be another 10 lbs. in so many days and so on until the result matches the original more lofty goal.
I think, however, that many of us have found that even such smaller goals are difficult to reach when it comes to weight loss. Why not make your goal only for one day! Tell yourself that today you will stick to your change to a more balanced lifestyle. You will eat your healthier diet and do your exercises? As Abondgirl states above, you can do anything for one day and all those one days add up. Before you know it, you've reached your original goal.
Now to develop this new mindset so that it is my norm and the first thing I think of when getting up in the morning ...
11 September 2013
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