My Health - Part One - History
These few posts about my health have been made public because I am no longer interested in explaining my situation and answering endless questions from even the most well-meaning friends. There is too much to explain and I do not care to debate, argue, defend myself or justify my choices. I espcially want to say that I am not looking for sympathy by posting about my challenges. My situation could be much more devastating and I have so much for which to be grateful. Next, I need to remind people that comments are welcome but I am not looking for advice and cures. There is no magical prescription from South Africa, no Windex secret and I will not be collecting my first morning urine to pour on my skin, okay? Thanks!
My whole life I felt strong and enjoyed the sense of power in my body. I loved to work hard and thrived on the sense of accomplishment. My husband will attest to the fact that he brought home the bacon working six days a week but I raised all four children myself. I did all the cooking, baking, cleaning, shopping, our personal and company books and banking, mowed lawns, tended the garden, volunteered at the school, was a Brownie leader and taught quilting. Building this home from scratch in nearly untouched forest was a challenge I relished. Handling so many rocks and boulders, I wore my engagement ring band so thin that I had to have it rebuilt.
Since my husband kept his city job and commuted home on weekends, I not only ran the household but was the principal operator of the tractor and all the attachments--front end loader, backhoe, pallet forks and snow plow. Using the backhoe, I dug six foot deep trenches to bury hundreds of feet of electric wire and water line, six feet deep, to prevent the water from freezing. I was the person neighbours called to bury their dogs and even a horse. I did carpentry, dry walling, mudding, painting, installed hardwood and slate flooring, installed fence posts and wire, built raised beds when the ground proved too rocky, and kept budgies, cats, dogs, quail, and a rabbit as pets. Outdoors we raised chickens, ducks, geese, turkeys for food. I planted trees, shrubs and flowers, grew veggies and fruit and made preserves. I LOVED my life!
Shortly after moving here with our youngest two children in 1995, my husband got sick. I suggested he had obstructive sleep apnea and needed to have his tonsils out as they blocked his airway when his throat relaxed as he slept. He snored loudly then stopped breathing for long periods and I would hold my own breath waiting for him to inhale! Sleep apnea was an uncommon diagnosis in those days but I was still disappointed that he and six doctors disagreed. In fact, the doctors mocked my diagnosis. For ten years I watched helplessly as my husband’s body shut down. He was on several medications, seeing several specialists, nearly died and had to have emergency surgery. Still, nobody believed he had sleep apnea.
Meanwhile there was trouble at work when his new boss told him, to his face, he was going to get rid of him, but not let him go with a payout, no, no, no. A payout and early retirement would have been wonderful but his last few years of work were absolute hell. We engaged a labour lawyer when the company tried to steal intellectual property that was rightfully his, even though there was legal documentation stating such. His intellectual property was software he wrote in his personal time outside work hours, but allowed the company to use at no cost. The battle went on for nearly two years. Cha-ching. Legal fees went into five figures just to keep what was his. Financially, we were extremely stressed, not knowing if he would stay on disability, return to work, or die; while in limbo the last two years, his income was reduced by half. That really messed up our financial planning.
Our city condo where he stayed during the work week was giving us problems. Poorly installed plumbing on another floor was causing our kitchen sink to back up, bringing all sorts of nasty foods with the water, such as fish skin and bones. The sink overflowed frequently and spilled all the way out of the kitchen, onto the hall carpet. I was beyond stressed. We decided to sell the condo. This was when my eyesight deteriorated so rapidly, my prescription changed four times during one eye exam. The optometrist was so alarmed she sent me for a diabetes test; it was negative. I now know my eyesight changes were connected to the other issues but from that time and for several years, even corrective lenses did not provide me with clear vision--and I could not see well enough to do any hand sewing. :-(
While he was still living in our condo during the work week, my husband needed emergency surgery to save his life in 2003. By the time he came home “on stress leave” in 2004, he really was dying. By then, I would not leave him alone; he fell down stairs and off ladders; he lost his keys, glasses and wallet regularly; he couldn’t think clearly and could barely function although he had three or four naps a day. He was miserable and took it out on me. He never felt well enough to go anywhere so we had no social life. I really didn’t know how I was going to carry on, for better or worse, in sickness and in health. Nearly two years of that wore me out but at least the doctor finally ordered an overnight sleep study.
An average of zero to five apnea (cessation of breathing) or dyspnea (difficulty or disordered breathing) events per hour over the course of the night is normal; five to fifteen is mild; fifteen to thirty is moderate; thirty events per hour is severe sleep apnea. Hubby experienced an average of 69 events per hour while sleeping on his side; that number increased to 109 events per hour while sleeping on his back. We do not know how he survived. We are grateful every day for our miracle.
First, sleeping with oxygen every night helped him tremendously, then came the C-PAP machine after his diagnosis, and finally he had UVVP (uvulopalatopharyngoplasty) surgery in 2006. Two years after he came home on disability, twelve years of watching him die after I suggested surgery, they removed his humungous tonsils, his uvula and part of the soft palate. I could relax a bit, which is, of course, when you fall apart, and I did, in a big way.
2004 - I became sensitive to scent and chemicals; they made me itchy or sleepy or both. I used to make up my own planter boxes and pots filled with annuals. Years ago, all commercial greenhouses used sprays, and I bought annuals from garden centres grown in commercial greenhouses. I could barely stay awake to finish them and slept for three days afterwards because of the chemicals used in commercial greenhouses. I had to avoid any nurseries, even open air ones, and any store which sold bedding plants, which is all of them--grocery and hardware stores, Costco, Canadian Tire, Home Depot. I start feeling itchy before I can see the Miracle Gro display. Even a closed bottle of bleach can be problematic, can trigger an asthma attack.
2005-2007 - Severe food sensitivities caused an extremely painful rash; a few triggers were salmon, coffee, asparagus, and tartrazine. Tartrazine was in the Bird's custard I made. It is a yellow food colouring also found in curry powder, Mountain Dew, Kraft Dinner and is also used to make green. It is banned in the UK. My rash was not hives, not shingles, not anything any doctor, nurse or Naturopath had ever seen. It sent me to the ER more than once and kept me housebound for weeks and months at a time. It felt like someone poured gasoline on my skin, then lit it. Almost worse than the rash were the side effects of prednisone prescribed to manage the painful rash. Bone pain, insomnia, weight gain, moon face, and extreme fatigue. Little did I know how long-lasting the side effects of prednisone would be, and how it would totally change my life.
2008 - I was much improved thanks to my Naturopath but I never really bounced back after taking so much prednisone. There were days when I did not have the strength to hold up a magazine or book to read. A decrease in strength and stamina continue to this day. Since I reacted to so many varied foods, she stripped my diet to the minimum but then I had so little fat in my diet, my hair started to fall out. After correcting that, my body started to recover and I lost a few of the prednisone pounds. That was one of the worst things that happened, taking prednisone when hitting menopause and becoming unable to move--triple whammy and a guaranteed massive weight gain! But, I began reintroducing foods and started to feel well again!
2009 - In October I moved in with my mother for about nine months to care for her after her diagnosis of incurable cancer. That was not difficult at all; dealing with family members in the same household was unbearably stressful. My first little patch of psoriasis appeared in November, after one month of living in the same house as my sister and her three daughters. It was, without a word of exaggeration, a living hell. Mom was so easy to be with until my sister and nieces were involved--which was constantly. They were so controlling and my mother was eager to keep them happy, which incensed me, but I had to do bite my tongue or cause my mother additional pain and stress. All that anger had to go somewhere, and it came out in my skin.
2010 - Suddenly my asthma attacks increased dramatically, from several minor attacks per year to several a week. I would often wake up in the night having an asthma attack. I had to begin a much more strict management protocol. I developed three more types of psoriasis--such an overachiever!--some caused by taking anti-inflammatory drugs for my arthritis. A single dose caused such severe pain for two weeks that it hurt when I would sit, stand, move or lie still. *** Edit *** A combination of pain and extreme fatigue forced me to give up driving. My car sat unused for so long. I paid the insurance for it to just sit there--the brakes were rusting from lack of use--because I longed to and dreamt of going to visit my mother, go shopping alone, or just enjoy the feeling of freedom. Eventually, I got rid of the painful reminder of what I had lost.***
2011 - Thinking I was feeling somewhat stronger, I went to visit my son, family and friends in Ontario. I was desperate to get away after being trapped at home. It poured. I got soaked. I felt the first tickle of a sore throat but as I was without my own wheels, I relied on others to drive me around. I asked to go to the pharmacy first thing in the morning and was told no; I had to wait until the end of the day and by then it was too late. I was too polite and too stunned to argue. Who would say no!? There are pharmacies everywhere in Ontario! Why didn’t I raise a stink? HUGE mistake. By late morning, I was shaky and feverish, clammy and weak. I was very sick for the next three months but never fully recovered any strength or stamina, and my voice has never been the same.
That combined with the unrelenting stress while dealing with my overall failing health, psoriasis treatments in another city for six weeks and my mother's final months and death just before Christmas was peppered with more visits to the ER and the first visit for flu complicated by asthma. Not being able to breathe is a horrible experience. By now, I am so unwell, weak and out of shape I can no longer take dogs for walks. I reluctantly realize we must sell the house as I need to be near medical treatment for my skin to avoid taking harmful drugs that will destroy my liver. It was a decision my husband pressed me to make for two years as he was forced to take on more and more of my responsibilities, then care for me as well. I was in denial, hoping I would improve. Not only does this painful decision mean I must leave my dream home but that I must also find homes for most of our pets. It has been two years since discussions about moving began but I could NOT imagine having to give up our animals and hoped I would recover enough to care for them again.
2012 - More ER visits, more flu/asthma, more fatigue--lots of extreme fatigue--and, of course, depression. When I say I don’t see people, I mean it literally. Sometimes I went weeks without leaving the house. I used to have a stream of out of town guests year round. People keep telling me to not push myself. Really? No matter how well meaning, I am so damn fed up with hearing that from people who, through no fault of their own, don't know anything about my situation. If I didn’t push myself to invite people over, I literally would see only my husband, dogs and cats for months at a time. Short visits to the city caused me to spiral down even lower and make me realize I cannot move to a city after all, a cause for celebration to be sure but by now we have found homes for five of our seven dogs. Even though we are going to stay put now, seven large dogs would be too much for my husband to care for while he is having to carry my share of the load and care for me. I know where they are, know they have wonderful, loving new homes. I miss them every single day. I miss my mother. Lots of tears.
Okay, so this is long and sad but not completely depressing as I believe there is always a bright spot! After my last trip to the ER I did a lot more reading--gotta love the internet--and think I have come up with the actual root cause of all my health problems. Better yet, I have a plan to regain my health--see Part Two coming soon! It could take two years or longer but I have not been well and fit since 2004 so I don’t think that’s such a long time.
My whole life I felt strong and enjoyed the sense of power in my body. I loved to work hard and thrived on the sense of accomplishment. My husband will attest to the fact that he brought home the bacon working six days a week but I raised all four children myself. I did all the cooking, baking, cleaning, shopping, our personal and company books and banking, mowed lawns, tended the garden, volunteered at the school, was a Brownie leader and taught quilting. Building this home from scratch in nearly untouched forest was a challenge I relished. Handling so many rocks and boulders, I wore my engagement ring band so thin that I had to have it rebuilt.
Since my husband kept his city job and commuted home on weekends, I not only ran the household but was the principal operator of the tractor and all the attachments--front end loader, backhoe, pallet forks and snow plow. Using the backhoe, I dug six foot deep trenches to bury hundreds of feet of electric wire and water line, six feet deep, to prevent the water from freezing. I was the person neighbours called to bury their dogs and even a horse. I did carpentry, dry walling, mudding, painting, installed hardwood and slate flooring, installed fence posts and wire, built raised beds when the ground proved too rocky, and kept budgies, cats, dogs, quail, and a rabbit as pets. Outdoors we raised chickens, ducks, geese, turkeys for food. I planted trees, shrubs and flowers, grew veggies and fruit and made preserves. I LOVED my life!
Shortly after moving here with our youngest two children in 1995, my husband got sick. I suggested he had obstructive sleep apnea and needed to have his tonsils out as they blocked his airway when his throat relaxed as he slept. He snored loudly then stopped breathing for long periods and I would hold my own breath waiting for him to inhale! Sleep apnea was an uncommon diagnosis in those days but I was still disappointed that he and six doctors disagreed. In fact, the doctors mocked my diagnosis. For ten years I watched helplessly as my husband’s body shut down. He was on several medications, seeing several specialists, nearly died and had to have emergency surgery. Still, nobody believed he had sleep apnea.
Meanwhile there was trouble at work when his new boss told him, to his face, he was going to get rid of him, but not let him go with a payout, no, no, no. A payout and early retirement would have been wonderful but his last few years of work were absolute hell. We engaged a labour lawyer when the company tried to steal intellectual property that was rightfully his, even though there was legal documentation stating such. His intellectual property was software he wrote in his personal time outside work hours, but allowed the company to use at no cost. The battle went on for nearly two years. Cha-ching. Legal fees went into five figures just to keep what was his. Financially, we were extremely stressed, not knowing if he would stay on disability, return to work, or die; while in limbo the last two years, his income was reduced by half. That really messed up our financial planning.
Our city condo where he stayed during the work week was giving us problems. Poorly installed plumbing on another floor was causing our kitchen sink to back up, bringing all sorts of nasty foods with the water, such as fish skin and bones. The sink overflowed frequently and spilled all the way out of the kitchen, onto the hall carpet. I was beyond stressed. We decided to sell the condo. This was when my eyesight deteriorated so rapidly, my prescription changed four times during one eye exam. The optometrist was so alarmed she sent me for a diabetes test; it was negative. I now know my eyesight changes were connected to the other issues but from that time and for several years, even corrective lenses did not provide me with clear vision--and I could not see well enough to do any hand sewing. :-(
While he was still living in our condo during the work week, my husband needed emergency surgery to save his life in 2003. By the time he came home “on stress leave” in 2004, he really was dying. By then, I would not leave him alone; he fell down stairs and off ladders; he lost his keys, glasses and wallet regularly; he couldn’t think clearly and could barely function although he had three or four naps a day. He was miserable and took it out on me. He never felt well enough to go anywhere so we had no social life. I really didn’t know how I was going to carry on, for better or worse, in sickness and in health. Nearly two years of that wore me out but at least the doctor finally ordered an overnight sleep study.
An average of zero to five apnea (cessation of breathing) or dyspnea (difficulty or disordered breathing) events per hour over the course of the night is normal; five to fifteen is mild; fifteen to thirty is moderate; thirty events per hour is severe sleep apnea. Hubby experienced an average of 69 events per hour while sleeping on his side; that number increased to 109 events per hour while sleeping on his back. We do not know how he survived. We are grateful every day for our miracle.
First, sleeping with oxygen every night helped him tremendously, then came the C-PAP machine after his diagnosis, and finally he had UVVP (uvulopalatopharyngoplasty) surgery in 2006. Two years after he came home on disability, twelve years of watching him die after I suggested surgery, they removed his humungous tonsils, his uvula and part of the soft palate. I could relax a bit, which is, of course, when you fall apart, and I did, in a big way.
2004 - I became sensitive to scent and chemicals; they made me itchy or sleepy or both. I used to make up my own planter boxes and pots filled with annuals. Years ago, all commercial greenhouses used sprays, and I bought annuals from garden centres grown in commercial greenhouses. I could barely stay awake to finish them and slept for three days afterwards because of the chemicals used in commercial greenhouses. I had to avoid any nurseries, even open air ones, and any store which sold bedding plants, which is all of them--grocery and hardware stores, Costco, Canadian Tire, Home Depot. I start feeling itchy before I can see the Miracle Gro display. Even a closed bottle of bleach can be problematic, can trigger an asthma attack.
2005-2007 - Severe food sensitivities caused an extremely painful rash; a few triggers were salmon, coffee, asparagus, and tartrazine. Tartrazine was in the Bird's custard I made. It is a yellow food colouring also found in curry powder, Mountain Dew, Kraft Dinner and is also used to make green. It is banned in the UK. My rash was not hives, not shingles, not anything any doctor, nurse or Naturopath had ever seen. It sent me to the ER more than once and kept me housebound for weeks and months at a time. It felt like someone poured gasoline on my skin, then lit it. Almost worse than the rash were the side effects of prednisone prescribed to manage the painful rash. Bone pain, insomnia, weight gain, moon face, and extreme fatigue. Little did I know how long-lasting the side effects of prednisone would be, and how it would totally change my life.
2008 - I was much improved thanks to my Naturopath but I never really bounced back after taking so much prednisone. There were days when I did not have the strength to hold up a magazine or book to read. A decrease in strength and stamina continue to this day. Since I reacted to so many varied foods, she stripped my diet to the minimum but then I had so little fat in my diet, my hair started to fall out. After correcting that, my body started to recover and I lost a few of the prednisone pounds. That was one of the worst things that happened, taking prednisone when hitting menopause and becoming unable to move--triple whammy and a guaranteed massive weight gain! But, I began reintroducing foods and started to feel well again!
2009 - In October I moved in with my mother for about nine months to care for her after her diagnosis of incurable cancer. That was not difficult at all; dealing with family members in the same household was unbearably stressful. My first little patch of psoriasis appeared in November, after one month of living in the same house as my sister and her three daughters. It was, without a word of exaggeration, a living hell. Mom was so easy to be with until my sister and nieces were involved--which was constantly. They were so controlling and my mother was eager to keep them happy, which incensed me, but I had to do bite my tongue or cause my mother additional pain and stress. All that anger had to go somewhere, and it came out in my skin.
2010 - Suddenly my asthma attacks increased dramatically, from several minor attacks per year to several a week. I would often wake up in the night having an asthma attack. I had to begin a much more strict management protocol. I developed three more types of psoriasis--such an overachiever!--some caused by taking anti-inflammatory drugs for my arthritis. A single dose caused such severe pain for two weeks that it hurt when I would sit, stand, move or lie still. *** Edit *** A combination of pain and extreme fatigue forced me to give up driving. My car sat unused for so long. I paid the insurance for it to just sit there--the brakes were rusting from lack of use--because I longed to and dreamt of going to visit my mother, go shopping alone, or just enjoy the feeling of freedom. Eventually, I got rid of the painful reminder of what I had lost.***
2011 - Thinking I was feeling somewhat stronger, I went to visit my son, family and friends in Ontario. I was desperate to get away after being trapped at home. It poured. I got soaked. I felt the first tickle of a sore throat but as I was without my own wheels, I relied on others to drive me around. I asked to go to the pharmacy first thing in the morning and was told no; I had to wait until the end of the day and by then it was too late. I was too polite and too stunned to argue. Who would say no!? There are pharmacies everywhere in Ontario! Why didn’t I raise a stink? HUGE mistake. By late morning, I was shaky and feverish, clammy and weak. I was very sick for the next three months but never fully recovered any strength or stamina, and my voice has never been the same.
That combined with the unrelenting stress while dealing with my overall failing health, psoriasis treatments in another city for six weeks and my mother's final months and death just before Christmas was peppered with more visits to the ER and the first visit for flu complicated by asthma. Not being able to breathe is a horrible experience. By now, I am so unwell, weak and out of shape I can no longer take dogs for walks. I reluctantly realize we must sell the house as I need to be near medical treatment for my skin to avoid taking harmful drugs that will destroy my liver. It was a decision my husband pressed me to make for two years as he was forced to take on more and more of my responsibilities, then care for me as well. I was in denial, hoping I would improve. Not only does this painful decision mean I must leave my dream home but that I must also find homes for most of our pets. It has been two years since discussions about moving began but I could NOT imagine having to give up our animals and hoped I would recover enough to care for them again.
2012 - More ER visits, more flu/asthma, more fatigue--lots of extreme fatigue--and, of course, depression. When I say I don’t see people, I mean it literally. Sometimes I went weeks without leaving the house. I used to have a stream of out of town guests year round. People keep telling me to not push myself. Really? No matter how well meaning, I am so damn fed up with hearing that from people who, through no fault of their own, don't know anything about my situation. If I didn’t push myself to invite people over, I literally would see only my husband, dogs and cats for months at a time. Short visits to the city caused me to spiral down even lower and make me realize I cannot move to a city after all, a cause for celebration to be sure but by now we have found homes for five of our seven dogs. Even though we are going to stay put now, seven large dogs would be too much for my husband to care for while he is having to carry my share of the load and care for me. I know where they are, know they have wonderful, loving new homes. I miss them every single day. I miss my mother. Lots of tears.
Okay, so this is long and sad but not completely depressing as I believe there is always a bright spot! After my last trip to the ER I did a lot more reading--gotta love the internet--and think I have come up with the actual root cause of all my health problems. Better yet, I have a plan to regain my health--see Part Two coming soon! It could take two years or longer but I have not been well and fit since 2004 so I don’t think that’s such a long time.