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
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