Well, up until now with my blog, it has mostly been the bad things that have happened in my life............let's get on with the other stuff...........
My grandparents had a vineyard and as it happened, they had one of the original family owned vineyards in the South Okanagan Valley, British Columbia Canada. Their vineyard consisted of about five acres, and they also had chicken coops, fruit trees, walnut trees, and hazlenut trees. Gramma(Lilly) had her beloved garden off to the side that ran the length of one of the lines of grapes. Pops(Clarence) loved his grapes........he was always out there tending to the vines, making sure that all the details were taken care of. I've got lots of great memories that revolved around that vineyard...........
My family is very large since my grandparents had eight kids and their families were of a wide varied number as well. Since grape picking co-incided with the Canadian Thanksgiving which was usually around the second weekend in October, lots of family and friends showed up to pick the grapes. During grape picking time, there were a lot of people picking the grapes as well as a tractor driver and workers that helped the driver pick up the picked grapes. At that time, there were two kinds of tractor runs that happened during the day.......a "wet run" when coffee, pop and beer were dropped off at the end of the grape rows and the "dry run" when the picked grapes were picked up and taken back to the shop and placed in wine bins to be stacked and taken to the winery. Needless to say, when the tractor came by on the wet runs, everyone was cheering and happy.........when the tractor came by on the dry runs, anyone that was on or near the tractor were pelted with handfulls of grapes.........provided Clarence wasn't watching.......LOL. Needless to say, by the end of the day, you knew who was on the tractor and who was just picking the grapes going by who had more purple stains on them and where.........The ones on the tractor not only had grape stains from fingertip to elbow but also had grape stains from head to toe........LOL.
Thanksgiving dinner was made that night by gramma.......she was a lady that stood 4 ft. 11 inches tall, yet she would be the spitfire person in the family.......one that others knew not to cross. Gramma would cook 3 or 4 turkeys between the oven upstairs and the one downstairs. Some of us grandkids thought that if we ganged up on her, we would be able to sneak some turkey from the kitchen before the birds actually made it to the table. My grandparents house was set up that there were 3 entrances into the kitchen......one from the backdoor, one from the livingroom/diningroom area, and one from the front door area....... Us grandkids thought that we had it figured out......since there were 3 attack angles to the kitchen, how could she defend them all at once.......WOW, were we ever wrong. I remember coming around that corner and finding my gramma standing guard with a wooden spoon in each of her hands. Needless to say, us kids were very lucky to get out of the kitchen with red knuckles and only enough turkey to fit into the palm of one of our hands that would have to be split between the 6 or more of us. When all was said and done, not a great achievement! Gramma took pride in picking the veggies from her garden that she would serve to us that night......there would be potatoes, ears of corn, carrots and cabbage all from the garden. Outside, there would be picnic tables lined up end for end, set for all the pickers with food galore.
Once everyone finished eating, then the fun was carried on to the basement where there was a dart board, a shuffleboard, a set up bar, lots of seating and a pianno in the corner. What great times we had at that time of the year........
Now that I am older, I look back on those years and thourally enjoy the memories of that day and age. My grandparents and some of my uncles and aunts are now gone, but their faces and memories still live on........
Monday, January 24, 2011
Monday, January 10, 2011
Things change...........
After a while, I was stable enough with the bladder disease to continue looking for employment and getting back to a normal life. I was able to find myself a full-time job working as a night auditor / front desk clerk at a local hote. I became to thourally enjoy my job, talking with the guests that came to stay with us from near and far..........
I had been working at that job for about a year and a half when I realized that I wanted to change careers. Since I made up my mind to go back to school in the fall for a pharmacy technician course, I took most of that summer off. Towards the end of the summer, I woke up one day with sore aching muscles and bones and a fever......of course my first thought was that it was just a cold or flu.......get over it and carry on. But by the end of the week, I couldn't get myself out of bed, had to crawl to the bathroom as I couldn't stand and walk.........my legs would just give out or I would be in so much pain in my right ankle and hip, that I just couldn't walk. I went to the doctor to see if he would know what's happening. After some blood work, we had a few answers. One of them is that my sedimentation rate was waaaaay off. In a normal situation, the sedimentation rate, which is an indication of how much inflammation in you body, should be in a measurement of 10 or under in order to be classified as normal. My inflammation rate was at 88. Even though my blood tests for Rheumatoid Arthritis, Lupus, and other blood tests came back normal, my symptoms fit the disease discription for Rheumatoid Arthritis (RA). There is a disease called Serronegative RA........meaning the blood test result for the RA test comes back normal even though all the symptoms a patient is experiencing matches up to the disease. I was immediately put onto steroids, Anti-inflammatories, Anti-biotics and a special diet to try to limit the amount of inflammation in my blood. By the end of the first month, my inflammation rate came down 20 points to 68, but since my kidneys and liver were having a hard time diffusing the steroids, I had to be taken off of them. Within the next month, I went back up 10 points to 78 because of being off the steroids. By the end of the second month, my disabilities had extended........ Not only was my right ankle and hip involved, now both ankles, both hips, the first 3 toes on each foot, my shoulders, elbows, wrists, hands and fingers are now all involved to varrying degrees. Through this time, I had been referred to a Rheumatologist.........Dr. Kimberly Northcott. In the beginning, I thought she was great and in her words, she said that she was ready for a challenge. As time progressed, she had me on Methotrexate, a form of Chemotherapy, some pain meds and some anti-inflammatories. After being on the Methotrexate(MTX) for a period of 6 months, I began to be sick with each weekly dose. By the end of the first year being on the MTX, with very little if any improvement, my kidneys and liver were starting to shut down..........it was decided that I would be taken off the MTX. During this year, I was unable to hold down a job due to my pain level, my dysfunction with regards to my legs and hands, and the simple fact that I couldn't guarantee a boss that I could be there on the scheduled date and time to work. Because of this, I decided that I should try to get a disability pension to help me afford to live. When I was taken off the MTX, Dr. Northcott said that she couldn't help me and didn't want me as a patient anymore...........I guess she wasn't actually ready for a challenge as she said. At one point in that first year when I was still a patient of Dr. Northcott's, she decided that my arthritis was in remission even though my symptoms were actually getting worse. Because of that statement, my search for a disability pension was made more difficult. I was officially denied my pension twice and then was given notice that if I wanted to persue the pension, I would have to go in front of a Pension Appeals Board. I was given a date for the hearing and went prepared to deffend myself. During the hearing, it was obvious to me that the letter that the Pension Appeals Board received from Dr. Northcott where she contemplated whether I was in remission or not........I wasn't going to be getting my pension, even after the board could see the condition I was in and hear what I have to say with regards to the application and Dr. Northcott's letter. Within 2 months after the hearing, I received the letter of decision by the board..........I was once again denyed my pension. At this time, my fingers are permanently bent and almost impossible to straighten them out, my back is starting to curve as one of my legs are now shorter and/or more deformed than the other one. I was currently walking with a cane to get from A to B and back again. In that letter, I was told that I could petition the court and take the PAB to the Federal Court to appeal the Pension Appeals Board's decision. After considering all my options, I decided to fight the decision.
That decision cost me the next year of specialist appointments, shuffling paperwork and filling out other paperwork so that I could have all the forms filled in. After jumping through all the hoops that had been given to me, I went to the Federal Court in Vancouver to fight for my rights. Again, it became very obvious that the stumbling block for everyone was the letter that Dr. Northcott had written, even though I had another specialist that confirmed the RA diagnosis and that I still had RA currently. After waiting 3months, for their decision.........it was decided that I had no case and the Pension Appeals Board (PAB) decision stands.
In the year since that decision came down, my arthritis has continued to deteriorate........I now have unbelievable pain in my hips, I have a hard time walking even with a cane, my toes on both feet sieze up daily, my right ankle now has bone spur growths happening on it due to the arthritis, I have bony nodules growing on my ankles, my toes, my ribs on my left side, and my hips. My shoulders are now siezing up to the point that it is almost impossible to reach above my head. My wrists are now so weak that at any time that I am using my cane for an extended period of time, doing laundry, grabbing out pots from the cupboard, or just out shopping; I have to wear my wrist braces to support my wrists. My fingers are becoming very boney and knobby.....I have nodule growths happening on the joints closest to the palm of my hand, the fingers will not straighten any more on their own.......every morning, I sit there and pull my fingers and try to straighten them out.....I work out the ligaments and tendons on a daily basis.
I am writing this info into my blog so that if anyone reads it, they might have a greater understanding of the disease for one thing, but also most importantly, I am wanting to give you all out there the heads up for how it is so important to find the right doctors to help you versus hinder your recovery. Also as I have found out, to try to obtain a disability pension can be very difficult if not impossible to obtain. Just make sure that you read up on all the information that the Pension board gives to you as well as checking out the information on the disease as to what you can use to help you on your quest. Currently, I am still unable to work but also don't have a disability pension.......Please don't let this happen to you.........learn from my mistakes and hopefully you will have more sucess than myself.
The specialist that I currently have has been helping me and we have been working together to hopefully make my life better. Because I was born with a heart condition, having the Arthritis puts me at a greater disadvantage as the possibility of developing complications with the lungs and heart because of the RA is dramatically increased. I am including a couple of links for RA........Please, please, please keep informed, read up as much as possible on the disease and if at all possible, be aware of the early warning signs. There are medications on the market this day and age that can help you with the process of fighting off the early symptoms of this disease, and thus maybe give you more of a succesful, working life up until you need to take things and treatments to the next level. I was 38 when I became afflicted with the disease, I am now 41.....way too young to have to depend on others, way too young to have to depend on society as a whole.
I hope that this blog helps anyone out there...........if it does, then I haven't gone through all of these processes in vain. At least someone out there will benefit from my unfortunate circumstance. Thanks to everyone that has found this blog and has taken the time to read it............
http://www.arthritis.ca/types%20of%20arthritis/default.asp?s=1&province=bc
http://www.arthritis.ca/local/files/pdf%20documents/Types%20of%20Arthritis/TAS_RA_eBROCH_ENG_S.pdf
I had been working at that job for about a year and a half when I realized that I wanted to change careers. Since I made up my mind to go back to school in the fall for a pharmacy technician course, I took most of that summer off. Towards the end of the summer, I woke up one day with sore aching muscles and bones and a fever......of course my first thought was that it was just a cold or flu.......get over it and carry on. But by the end of the week, I couldn't get myself out of bed, had to crawl to the bathroom as I couldn't stand and walk.........my legs would just give out or I would be in so much pain in my right ankle and hip, that I just couldn't walk. I went to the doctor to see if he would know what's happening. After some blood work, we had a few answers. One of them is that my sedimentation rate was waaaaay off. In a normal situation, the sedimentation rate, which is an indication of how much inflammation in you body, should be in a measurement of 10 or under in order to be classified as normal. My inflammation rate was at 88. Even though my blood tests for Rheumatoid Arthritis, Lupus, and other blood tests came back normal, my symptoms fit the disease discription for Rheumatoid Arthritis (RA). There is a disease called Serronegative RA........meaning the blood test result for the RA test comes back normal even though all the symptoms a patient is experiencing matches up to the disease. I was immediately put onto steroids, Anti-inflammatories, Anti-biotics and a special diet to try to limit the amount of inflammation in my blood. By the end of the first month, my inflammation rate came down 20 points to 68, but since my kidneys and liver were having a hard time diffusing the steroids, I had to be taken off of them. Within the next month, I went back up 10 points to 78 because of being off the steroids. By the end of the second month, my disabilities had extended........ Not only was my right ankle and hip involved, now both ankles, both hips, the first 3 toes on each foot, my shoulders, elbows, wrists, hands and fingers are now all involved to varrying degrees. Through this time, I had been referred to a Rheumatologist.........Dr. Kimberly Northcott. In the beginning, I thought she was great and in her words, she said that she was ready for a challenge. As time progressed, she had me on Methotrexate, a form of Chemotherapy, some pain meds and some anti-inflammatories. After being on the Methotrexate(MTX) for a period of 6 months, I began to be sick with each weekly dose. By the end of the first year being on the MTX, with very little if any improvement, my kidneys and liver were starting to shut down..........it was decided that I would be taken off the MTX. During this year, I was unable to hold down a job due to my pain level, my dysfunction with regards to my legs and hands, and the simple fact that I couldn't guarantee a boss that I could be there on the scheduled date and time to work. Because of this, I decided that I should try to get a disability pension to help me afford to live. When I was taken off the MTX, Dr. Northcott said that she couldn't help me and didn't want me as a patient anymore...........I guess she wasn't actually ready for a challenge as she said. At one point in that first year when I was still a patient of Dr. Northcott's, she decided that my arthritis was in remission even though my symptoms were actually getting worse. Because of that statement, my search for a disability pension was made more difficult. I was officially denied my pension twice and then was given notice that if I wanted to persue the pension, I would have to go in front of a Pension Appeals Board. I was given a date for the hearing and went prepared to deffend myself. During the hearing, it was obvious to me that the letter that the Pension Appeals Board received from Dr. Northcott where she contemplated whether I was in remission or not........I wasn't going to be getting my pension, even after the board could see the condition I was in and hear what I have to say with regards to the application and Dr. Northcott's letter. Within 2 months after the hearing, I received the letter of decision by the board..........I was once again denyed my pension. At this time, my fingers are permanently bent and almost impossible to straighten them out, my back is starting to curve as one of my legs are now shorter and/or more deformed than the other one. I was currently walking with a cane to get from A to B and back again. In that letter, I was told that I could petition the court and take the PAB to the Federal Court to appeal the Pension Appeals Board's decision. After considering all my options, I decided to fight the decision.
That decision cost me the next year of specialist appointments, shuffling paperwork and filling out other paperwork so that I could have all the forms filled in. After jumping through all the hoops that had been given to me, I went to the Federal Court in Vancouver to fight for my rights. Again, it became very obvious that the stumbling block for everyone was the letter that Dr. Northcott had written, even though I had another specialist that confirmed the RA diagnosis and that I still had RA currently. After waiting 3months, for their decision.........it was decided that I had no case and the Pension Appeals Board (PAB) decision stands.
In the year since that decision came down, my arthritis has continued to deteriorate........I now have unbelievable pain in my hips, I have a hard time walking even with a cane, my toes on both feet sieze up daily, my right ankle now has bone spur growths happening on it due to the arthritis, I have bony nodules growing on my ankles, my toes, my ribs on my left side, and my hips. My shoulders are now siezing up to the point that it is almost impossible to reach above my head. My wrists are now so weak that at any time that I am using my cane for an extended period of time, doing laundry, grabbing out pots from the cupboard, or just out shopping; I have to wear my wrist braces to support my wrists. My fingers are becoming very boney and knobby.....I have nodule growths happening on the joints closest to the palm of my hand, the fingers will not straighten any more on their own.......every morning, I sit there and pull my fingers and try to straighten them out.....I work out the ligaments and tendons on a daily basis.
I am writing this info into my blog so that if anyone reads it, they might have a greater understanding of the disease for one thing, but also most importantly, I am wanting to give you all out there the heads up for how it is so important to find the right doctors to help you versus hinder your recovery. Also as I have found out, to try to obtain a disability pension can be very difficult if not impossible to obtain. Just make sure that you read up on all the information that the Pension board gives to you as well as checking out the information on the disease as to what you can use to help you on your quest. Currently, I am still unable to work but also don't have a disability pension.......Please don't let this happen to you.........learn from my mistakes and hopefully you will have more sucess than myself.
The specialist that I currently have has been helping me and we have been working together to hopefully make my life better. Because I was born with a heart condition, having the Arthritis puts me at a greater disadvantage as the possibility of developing complications with the lungs and heart because of the RA is dramatically increased. I am including a couple of links for RA........Please, please, please keep informed, read up as much as possible on the disease and if at all possible, be aware of the early warning signs. There are medications on the market this day and age that can help you with the process of fighting off the early symptoms of this disease, and thus maybe give you more of a succesful, working life up until you need to take things and treatments to the next level. I was 38 when I became afflicted with the disease, I am now 41.....way too young to have to depend on others, way too young to have to depend on society as a whole.
I hope that this blog helps anyone out there...........if it does, then I haven't gone through all of these processes in vain. At least someone out there will benefit from my unfortunate circumstance. Thanks to everyone that has found this blog and has taken the time to read it............
http://www.arthritis.ca/types%20of%20arthritis/default.asp?s=1&province=bc
http://www.arthritis.ca/local/files/pdf%20documents/Types%20of%20Arthritis/TAS_RA_eBROCH_ENG_S.pdf
Saturday, December 4, 2010
On the move again........
In 1995 we made the decision to move to Vancouver Island where Jim's family lived. It was great to move to a new locale as we are the type of people that can't let moss grow around our feet and want to be on the move. We had a great Christmas with Jim's family that year, then in the new year..1996...all HELL broke loose as the Island was gripped with the worse storm that they had seen in over 60 years. At our home on the bench above the town of Duncan, we had around 3.5 to 4 feet of snow. All of that snow fell within a 48 hour period. Needless to say, there were a lot of buildings downed by the weight of the snow....our cars were almost litterally burried by the snow....most of the plants and trees in our yard were broken and in fact we lost a lot of the Rhoddies and Azalea's due to the weight of the snow breaking most if not all the branches off. A very nice welcome to the "mild Vancouver Island", and yes, I am saying that with as much sarcastic attitude that I can.......LOL.
We both worked, had a great life on the Island and sneaked as many trips back to the Okanagan that we could to visit my family there and life carried on......until about 2002, when once again I began to have health problems.
It started off quite slowly with generalized pain in my bladder.....which progressed very quickly to a full blown pain depending on what I ate and drank. I was first put on antibiotics as it was thought that I was having bladder infections. As the weeks turned into months, I saw many specialists. Because of my previous health problems with the Endometreosis, there was a question as to whether my adhesions from the scar tissue through my organs was causing the pain. I then went to a Gynecologist to rule that out.....after 2 minor surgeries, they decided that the scar tissue through my organs wasn't the cause of my current pain. I was then referred to an Internist whom really thought that I needed an Urologist as the Internist was certain that my pain was the result of a bladder problem. I went to a local Urologist in Duncan. He put me through some tests and decided that I had a Uracle Cyst and that I needed to have bladder surgery to correct the problem. The problem was though, I had to come to terms that I was going to loose half my bladder or more to correct this problem and if things didn't go well, I would end up on a bag that I would have to pee in for the rest of my life. The day of the surgery, we went to the hospital....I had finally come to terms of my possible fate......upon arriving at the hospital, I was told the surgery wouldn't happen. Upon further consideration of my test results that Urologist decided that what he thought was the problem, definately wasn't the problem now and instead of the planned surgery, he would do a minor surgery and have a look inside my bladder to see if there is an internal problem there that he couldn't find by using the previous tests. Through doing that surgery, the Urologist found that I had bleeding ulcers in my bladder and the size of my bladder shrunk to 1/3 to 1/2 of it's normal capacity....I was put on some more pain medication, more steroids to reduce inflammation and during the surgery, he put a rinsing fluid in my bladder with medication in it to try to heal the bleeding ulcers. About a month later, I went back in for another surgery to re-assess where my bladder stood at that time. It was decided that my bladder had continued to shrink and the ulcers were more severe than before. It was then decided that I might possibly have Intersticial Cystitis. This is a lifelong disease of the bladder with no known cure. Because I was still having an unbelievable amount of pain and was requiring about 12 Oxycocet tablets a day as well as being on an extremely bland diet to try to heal the ulcers in the bladder, I was referred to another specialist in Victoria. After several more tests and 2 other surgeries, this specialist confirmed the other Urologist's diagnosis of Intersticial Cystitis.
What happens with Intersticial Cystitis, is that the lining that protects the inside of your bladder is destroyed through the process of this disease. As there is no certain cure for this disease and bladder transplants just aren't done, the next course of action was to try several medications before considering having the bladder removed and a catherter bag installed. As the steroids weren't really doing much, I went through another surgery that would instill more medication directly into the bladder as well as numbing instillations that I went through on a weekly basis for one month. None of these treatments were working and now I was taking upwards of 14-16 oxycocet tablets a day to try to cope with the pain. At that time, my dr's were becoming concerned that I would develop a dependancy on the oxycocet as they are known for being very addictive. My diet at that time consisted of bland vegetables, no spices for cooking except salt and garlic, plain potatoes and plain rice. Still nothing was working. Finally they decided to take me off the steroids as my kidneys and liver were beginning to shut down. After the months turned into a year, and then 2 years, I was put onto a medication called Gabapentin or Neurontin as it is sometimes called. This medication is suppose to numb down the nerves going from the bladder or other nerve pain up the spinal cord to the brain....the concept is that if my brain doesn't know that there are pain signals being sent there, maybe I will be out of pain or at least reduce it to a very minimal amount that I can cope with. After being on the medication for 2 weeks, one day I found myself not taking an oxycocet at all for 1 day. At that time, I took myself off the pain pills as they weren't needed anymore. I never had withdrawl symptoms from stopping the Oxycocet's cold turkey, except for having trouble sleeping for a couple of nights. That was the only side effect from stopping a narcotic drug that I had been on for over 2 years on a daily basis. It was considered a miracle that I had no side effects from stopping that drug, but as one pain specialist told me, my body actually "needed that amount of pain medication and actually used up the medication on a daily basis. Since my body used it up, there was no way that I could actually get addicted to it". The moral of the story, if your body actually needs that amount of a narcotic to fight the ACTUAL pain in one's body, then there isn't enough of the drug left over in your system to actually get addicted to the drug. I am not saying that the Gabapentin actually cured the bladder disease.......far from it, and eventually one day, I may still have to have my bladder removed as the disease is still progressing on a daily basis. I do know that I still have about 1/2 to 1/3 of my bladder lining remaining intact. One day, I will eventually require a bladder removal as if you keep the bladder without a lining in it, you can have unlimited bleeding coming out of your bladder due to the fact that there is no lining remaining that protects the numerous blood vessels that is inside your bladder. That is a fate that I will more than likely face one day........but until then, I continue to take the Gabapentin, remain on a mild diet that is suited to my bladder situation, take the pain pills as needed, and try to live my life as normal as possible.
My moral of the story is that if you yourself or someone you know is diagnosed with the baldder disease Intersticial Cystitis, PLEASE check out all your options before you resort to a doctor telling you that you have to have your bladder removed. There may be other solutions. I was 33 when I was diagnosed with this horrible disease. It isn't a disease that only affects the old or the young and can affect anyone at anytime to any degree.
I am now 41 and continue to fight the good fight with this disease...........
We both worked, had a great life on the Island and sneaked as many trips back to the Okanagan that we could to visit my family there and life carried on......until about 2002, when once again I began to have health problems.
It started off quite slowly with generalized pain in my bladder.....which progressed very quickly to a full blown pain depending on what I ate and drank. I was first put on antibiotics as it was thought that I was having bladder infections. As the weeks turned into months, I saw many specialists. Because of my previous health problems with the Endometreosis, there was a question as to whether my adhesions from the scar tissue through my organs was causing the pain. I then went to a Gynecologist to rule that out.....after 2 minor surgeries, they decided that the scar tissue through my organs wasn't the cause of my current pain. I was then referred to an Internist whom really thought that I needed an Urologist as the Internist was certain that my pain was the result of a bladder problem. I went to a local Urologist in Duncan. He put me through some tests and decided that I had a Uracle Cyst and that I needed to have bladder surgery to correct the problem. The problem was though, I had to come to terms that I was going to loose half my bladder or more to correct this problem and if things didn't go well, I would end up on a bag that I would have to pee in for the rest of my life. The day of the surgery, we went to the hospital....I had finally come to terms of my possible fate......upon arriving at the hospital, I was told the surgery wouldn't happen. Upon further consideration of my test results that Urologist decided that what he thought was the problem, definately wasn't the problem now and instead of the planned surgery, he would do a minor surgery and have a look inside my bladder to see if there is an internal problem there that he couldn't find by using the previous tests. Through doing that surgery, the Urologist found that I had bleeding ulcers in my bladder and the size of my bladder shrunk to 1/3 to 1/2 of it's normal capacity....I was put on some more pain medication, more steroids to reduce inflammation and during the surgery, he put a rinsing fluid in my bladder with medication in it to try to heal the bleeding ulcers. About a month later, I went back in for another surgery to re-assess where my bladder stood at that time. It was decided that my bladder had continued to shrink and the ulcers were more severe than before. It was then decided that I might possibly have Intersticial Cystitis. This is a lifelong disease of the bladder with no known cure. Because I was still having an unbelievable amount of pain and was requiring about 12 Oxycocet tablets a day as well as being on an extremely bland diet to try to heal the ulcers in the bladder, I was referred to another specialist in Victoria. After several more tests and 2 other surgeries, this specialist confirmed the other Urologist's diagnosis of Intersticial Cystitis.
What happens with Intersticial Cystitis, is that the lining that protects the inside of your bladder is destroyed through the process of this disease. As there is no certain cure for this disease and bladder transplants just aren't done, the next course of action was to try several medications before considering having the bladder removed and a catherter bag installed. As the steroids weren't really doing much, I went through another surgery that would instill more medication directly into the bladder as well as numbing instillations that I went through on a weekly basis for one month. None of these treatments were working and now I was taking upwards of 14-16 oxycocet tablets a day to try to cope with the pain. At that time, my dr's were becoming concerned that I would develop a dependancy on the oxycocet as they are known for being very addictive. My diet at that time consisted of bland vegetables, no spices for cooking except salt and garlic, plain potatoes and plain rice. Still nothing was working. Finally they decided to take me off the steroids as my kidneys and liver were beginning to shut down. After the months turned into a year, and then 2 years, I was put onto a medication called Gabapentin or Neurontin as it is sometimes called. This medication is suppose to numb down the nerves going from the bladder or other nerve pain up the spinal cord to the brain....the concept is that if my brain doesn't know that there are pain signals being sent there, maybe I will be out of pain or at least reduce it to a very minimal amount that I can cope with. After being on the medication for 2 weeks, one day I found myself not taking an oxycocet at all for 1 day. At that time, I took myself off the pain pills as they weren't needed anymore. I never had withdrawl symptoms from stopping the Oxycocet's cold turkey, except for having trouble sleeping for a couple of nights. That was the only side effect from stopping a narcotic drug that I had been on for over 2 years on a daily basis. It was considered a miracle that I had no side effects from stopping that drug, but as one pain specialist told me, my body actually "needed that amount of pain medication and actually used up the medication on a daily basis. Since my body used it up, there was no way that I could actually get addicted to it". The moral of the story, if your body actually needs that amount of a narcotic to fight the ACTUAL pain in one's body, then there isn't enough of the drug left over in your system to actually get addicted to the drug. I am not saying that the Gabapentin actually cured the bladder disease.......far from it, and eventually one day, I may still have to have my bladder removed as the disease is still progressing on a daily basis. I do know that I still have about 1/2 to 1/3 of my bladder lining remaining intact. One day, I will eventually require a bladder removal as if you keep the bladder without a lining in it, you can have unlimited bleeding coming out of your bladder due to the fact that there is no lining remaining that protects the numerous blood vessels that is inside your bladder. That is a fate that I will more than likely face one day........but until then, I continue to take the Gabapentin, remain on a mild diet that is suited to my bladder situation, take the pain pills as needed, and try to live my life as normal as possible.
My moral of the story is that if you yourself or someone you know is diagnosed with the baldder disease Intersticial Cystitis, PLEASE check out all your options before you resort to a doctor telling you that you have to have your bladder removed. There may be other solutions. I was 33 when I was diagnosed with this horrible disease. It isn't a disease that only affects the old or the young and can affect anyone at anytime to any degree.
I am now 41 and continue to fight the good fight with this disease...........
Sunday, November 28, 2010
Westward Bound.........
The two of us made the decision to move back to BC where both of our families were. We upgraded to a better car for the trip back and we also managed to gain a motorbike along the journey in Ontario(a bike that Jim himself owned so long ago) so we got a trailer to take it back to BC with us. After modifying the trailer and packing up most of our belongings, we once again hit the road. We crossed the Canadian / USA border at Port Huron and continued along Route 2 through the northern USA. It was a great trip and we saw lots of wildlife and nature, as well as met some very kind and interesting people along the way. We were able to spend 7 days on our route this time as we made the move in the middle of August and camped/hotel'ed along the way. Our first food order mistake - the menu said bacon and eggs....us greedy souls decided that we were too hungry for 2 pieces of bacon and 2 eggs so we ordered hashbrowns and toast.......the next thing we knew, there were 2 waitresses bringing us 4 humungous platters of food.........food that would feed about 6 people.......Big Mistake!! There are some great memories along the way; our first purchase in the states of a full tank of gas - 2 packs of cigs and breakfast for 25.00, the Macinac Bridge, the roadkill stew in northern Michigan, the fields and fields of sunflower plants through Northern Dakota, the flat prairie land through eastern Montana, the wonderful hosts in Cut Bank Montana whom bought us dinner one night, the majestic Glacier National Park, and the interesting scenery through northern Idaho and Eastern Washington state, oh yea - the food.....we finally figured out how much to order from a menu by the time we were ready to re-enter Canada. All in all, a wonderful trip. As we entered Canada again in Osoyoos, we came back to reality.......
We went to my families place in Penticton and got settled there.....After we had been there for about a year, we faced our first medical crisis with me.
I began to have lots of pain in my belly and during every menstrual cycle, the pain grew. After seeing several medical doctors and specialists, it was discovered that I had Endometreosis. As it turns out, Endometreosis is a disease that can prevent one from becoming pregnant, and if a lady becomes pregnant with the disease, depending on the damage done to the uterus and surrounding tissues, the chance that the woman can carry the child to full term is doubtful.....in my case with the severity of the disease, I was told that if I did become pregnant, the likelyhood that I would have a miscarriage was about 95%. Endemetreosis is when your lining of your uterus actually grows on the inside of your body cavity versus where it is suppose to be. I was put onto steroids and several medications that actually changed how my body worked. I was put onto testosterone which is suppose to stop the cycle. Nothing worked.......By the time that the doctors realized how bad things were, I had several growths on my bladder, kidneys, intestines, liver and lungs. The problem with this diseases is that when you have a menstral cycle, those growths also bleed, which cause increased pain and more growths to develop. After an attack that sent me to the hospital, it was decided that I would need a Radical hysterectomy in order to stop the process, as at that time, it was the only known CURE for the disease. At the age of 22, I had the hysterectomy which in effect changed the first part of our lives together forever......We would never have the children that we wanted.
At this same time, it was also discovered that I had hyperthyroidism, which as it turned out, made the endometreosis grow at a rapid rate. Only the hyperthyroidism wasn't discovered until after I had the hysterectomy. If things were discovered the other way around, I probably wouldn't of needed the hysterectomy at that time. Shortly after discovering that I had hyperthyroidism, I had a radioactive iodine treatment to reverse the disease.
Time went on for a while and things were okay, then I began to have problems with sight, breathing, confussion, and general unwellness......one day my husband took me to the hospital where I was admitted for a week. In that time they found that I now had Hypothyroidism, which is when your thyroid goes low and they need to give you medication to bring the levels back up to normal.
By the end of that year, things had happened to our lives that wouldn't be reversed.....the only way we could have children in our lives now was to adopt. As Jim was now nearing 40 years old, at that time, they wouldn't allow a person to go through the adoption process at that age.........In other words, if I wanted to adopt a child, I would have to leave my hubby and try to get a child on my own. Not great. I made the decision to not have children and to stay with the man that stood by me through the last year.....the love that he shared with me, gave me strength to fight and carry on. It was a decision that I am still VERY happy with today!!
We spent 4 very nice years in the Okanagan / Similiameen valleys before deciding that it was time to start anew.........
We went to my families place in Penticton and got settled there.....After we had been there for about a year, we faced our first medical crisis with me.
I began to have lots of pain in my belly and during every menstrual cycle, the pain grew. After seeing several medical doctors and specialists, it was discovered that I had Endometreosis. As it turns out, Endometreosis is a disease that can prevent one from becoming pregnant, and if a lady becomes pregnant with the disease, depending on the damage done to the uterus and surrounding tissues, the chance that the woman can carry the child to full term is doubtful.....in my case with the severity of the disease, I was told that if I did become pregnant, the likelyhood that I would have a miscarriage was about 95%. Endemetreosis is when your lining of your uterus actually grows on the inside of your body cavity versus where it is suppose to be. I was put onto steroids and several medications that actually changed how my body worked. I was put onto testosterone which is suppose to stop the cycle. Nothing worked.......By the time that the doctors realized how bad things were, I had several growths on my bladder, kidneys, intestines, liver and lungs. The problem with this diseases is that when you have a menstral cycle, those growths also bleed, which cause increased pain and more growths to develop. After an attack that sent me to the hospital, it was decided that I would need a Radical hysterectomy in order to stop the process, as at that time, it was the only known CURE for the disease. At the age of 22, I had the hysterectomy which in effect changed the first part of our lives together forever......We would never have the children that we wanted.
At this same time, it was also discovered that I had hyperthyroidism, which as it turned out, made the endometreosis grow at a rapid rate. Only the hyperthyroidism wasn't discovered until after I had the hysterectomy. If things were discovered the other way around, I probably wouldn't of needed the hysterectomy at that time. Shortly after discovering that I had hyperthyroidism, I had a radioactive iodine treatment to reverse the disease.
Time went on for a while and things were okay, then I began to have problems with sight, breathing, confussion, and general unwellness......one day my husband took me to the hospital where I was admitted for a week. In that time they found that I now had Hypothyroidism, which is when your thyroid goes low and they need to give you medication to bring the levels back up to normal.
By the end of that year, things had happened to our lives that wouldn't be reversed.....the only way we could have children in our lives now was to adopt. As Jim was now nearing 40 years old, at that time, they wouldn't allow a person to go through the adoption process at that age.........In other words, if I wanted to adopt a child, I would have to leave my hubby and try to get a child on my own. Not great. I made the decision to not have children and to stay with the man that stood by me through the last year.....the love that he shared with me, gave me strength to fight and carry on. It was a decision that I am still VERY happy with today!!
We spent 4 very nice years in the Okanagan / Similiameen valleys before deciding that it was time to start anew.........
Saturday, November 27, 2010
Our Early Years......
After Jim and I moved to Vancouver Island, we spent the first four months in the small community of Duncan, BC. As jobs were in short supply and our itchy feet wanted to wander, we picked up our socks and packed up our 1971 Datsun 510 with all our belongings and left Duncan in the first couple of weeks of December 1988. What a stupid time of year to do that......LOL. We arrived in the Okanagan Valley, in Penticton and spent a bit of time with my family before we packed up the car again with our remaining belongings. As we travelled east, we were heading for Burlington, where Jim grew up and where he knew there were lots of jobs for us.
After 3 days of travelling night and day as we knew that there were some winter storms chasing us, we decided we couldn't drive anymore and stopped in Dryden, Ontario for some much needed nourishment and complete sleep. Now some would say that it was a stupid idea to stop in that town as it's reputation for being cold, but we had enough. BIG MISTAKE!! We woke up the next morning to find out that we were frozen into our motel room, and when we looked outside through the tiny space in the frozen window, we found our little Datsun to be sitting in a cave of snow and ice. Yup, those storms caught up with us and hit with a vengence........snow and ice thicker than you could imagine. We phoned the manager of the hotel who came with a hairdryer and hot water to pry us out of our room. Then we found a towtruck and got our car towed to a garage where it took several hours to melt before we could get back into the car. Needless to say, that was our last stop until we got to our destination.
Now, remember, I am a small town girl, born and raised so when we got to Toronto during rush hour traffic Friday morning, you can imagine the culture shock that I faced. LOL. We carried on down the highway with all communities blending into the next with no clear definition till we reached Burlington. We went to one of Jim's "old haunts" to meet up with his friends and within 2 hours, we each had a job and a place to live. Yes, things were looking up.
We lived quite happily between Burlington and Hamilton, both working and managed to get in some great camping trips to several parks around. We had our Sunday drives to Port Dover where we would have perch dinners and enjoy the lazy drive back to Hamilton where we lived at that time......then in the summer, we would pack a picnic supper and head to the nightly drive-ins and would manage to get 2 movies a night and once every two weeks, there would be a 3 peat. After we spent 3 years in the area, we both began getting itchy feet and wanted to travel once again........
After 3 days of travelling night and day as we knew that there were some winter storms chasing us, we decided we couldn't drive anymore and stopped in Dryden, Ontario for some much needed nourishment and complete sleep. Now some would say that it was a stupid idea to stop in that town as it's reputation for being cold, but we had enough. BIG MISTAKE!! We woke up the next morning to find out that we were frozen into our motel room, and when we looked outside through the tiny space in the frozen window, we found our little Datsun to be sitting in a cave of snow and ice. Yup, those storms caught up with us and hit with a vengence........snow and ice thicker than you could imagine. We phoned the manager of the hotel who came with a hairdryer and hot water to pry us out of our room. Then we found a towtruck and got our car towed to a garage where it took several hours to melt before we could get back into the car. Needless to say, that was our last stop until we got to our destination.
Now, remember, I am a small town girl, born and raised so when we got to Toronto during rush hour traffic Friday morning, you can imagine the culture shock that I faced. LOL. We carried on down the highway with all communities blending into the next with no clear definition till we reached Burlington. We went to one of Jim's "old haunts" to meet up with his friends and within 2 hours, we each had a job and a place to live. Yes, things were looking up.
We lived quite happily between Burlington and Hamilton, both working and managed to get in some great camping trips to several parks around. We had our Sunday drives to Port Dover where we would have perch dinners and enjoy the lazy drive back to Hamilton where we lived at that time......then in the summer, we would pack a picnic supper and head to the nightly drive-ins and would manage to get 2 movies a night and once every two weeks, there would be a 3 peat. After we spent 3 years in the area, we both began getting itchy feet and wanted to travel once again........
Saturday, November 20, 2010
The Beginning
My journey started twenty three years ago when I was working at the local ski hill for the winter. It was a great time spent, learning lots and having lots of fun. When the winter was over, I came down from the hill and settled in a community east of Vancouver, BC called Hedley. It was there that I was managing a campground/hotel/cafe and that is when I met my future husband.
Jim was moving from Burlington, Ontario to Vancouver Island where his parents and sister were living....He left Burlington on a motorbike, travelled lazily through northern Ontario and Manitoba stopping along the way to camp at night and enjoy his travels. He quite quickly went through Saskatchewan and Alberta till he got to the Rockies....of which, he slowed down a bit to enjoy the scenery. One night he decided to camp near Greenwood, BC. He got his tent set up, got his food for the night and went back to the campground to sit there and wonder why he was there as he "felt" that it wasn't the place to be. He packed up his gear, gave the food and beer to a person nearby, and got back on his bike and drove. He left Greenwood, which is just west of Grandforks, and drove through several communities and by several campgrounds till he got to Hedley.
That night, I was suppose to go to Penticton to be with my family there for dinner. I decided after our busy weekend, I was too tired to go so cancelled.......meanwhile, I was cleaning up the cafe and putting the stuff away from the day when Jim came in. He had supper, booked a hotel room for the night and as was customary for the campground, we usually had a communal bonfire at night. Since there was only him and another couple there, I invited them to the bonfire. As it turned out, Jim was the only one that showed up and we talked till the wee hours of the morning. As I thought he was going to be gone the next day, I said my goodbyes and went to bed. The next morning, Jim was waiting for me at the cafe.......he booked the campground for a week.
We spent the following week swimming in the river, talking till all hours of the night, eating our meals together and just having fun and getting to know one another. At the end of that week, Jim asked me to move to Vancouver Island with him and we have been together ever since.
When you look at everything, there were so many things that could of changed up even meeting at all....Jim staying in Greenwood, me going to Penticton to be with my family, Jim going on the wrong highway at one time then getting himself turned around........ There were so many things that could of changed our chance meeting......a chance meeting that has lasted for 23 years and still going strong. It was the best chance meeting of my life and one that I will never want to trade for anything else.
Well, that is my first addition to this blog. There are many more to come as our story began 23 years ago and still continues now.....
That night, I was suppose to go to Penticton to be with my family there for dinner. I decided after our busy weekend, I was too tired to go so cancelled.......meanwhile, I was cleaning up the cafe and putting the stuff away from the day when Jim came in. He had supper, booked a hotel room for the night and as was customary for the campground, we usually had a communal bonfire at night. Since there was only him and another couple there, I invited them to the bonfire. As it turned out, Jim was the only one that showed up and we talked till the wee hours of the morning. As I thought he was going to be gone the next day, I said my goodbyes and went to bed. The next morning, Jim was waiting for me at the cafe.......he booked the campground for a week.
We spent the following week swimming in the river, talking till all hours of the night, eating our meals together and just having fun and getting to know one another. At the end of that week, Jim asked me to move to Vancouver Island with him and we have been together ever since.
When you look at everything, there were so many things that could of changed up even meeting at all....Jim staying in Greenwood, me going to Penticton to be with my family, Jim going on the wrong highway at one time then getting himself turned around........ There were so many things that could of changed our chance meeting......a chance meeting that has lasted for 23 years and still going strong. It was the best chance meeting of my life and one that I will never want to trade for anything else.
Well, that is my first addition to this blog. There are many more to come as our story began 23 years ago and still continues now.....
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