I will definitely look for a replay of this show as I would love to see it. "House" actually had a diagnoses on his show but it really saddened me be the producer shoved it off as a nuisance in her life and all she needed to do is take some steriods and life would be cherry! How I wish that was true. I now take over 13 medications and life is not cherry. It is a constant give and take with my body and a full time job of managing my medical care which is exhausting sometimes I might add. There are days I wish I could take a break from Sjogren's and so does my husband. Him and I are a team and without him I would be walking a path alone. I know many women who walk alone and I don't know how they do it. My extended family do not understand and even my adult chidren do not. They expect of mom and that is the end of that. We don't look sick on the outside. As for the recent Learning Channel series, I wish the Sjogren's Association stayed ontop of this and notified their members and I wish there was more of this dreadful disease in the public eye and medical eye! I have suffered with Primary Sjogrens for so long and was officially diagnosed in 1999. I had seen every doctor under the sun. It was actually my Pearle Vision eye doctor who helped me in confirming what I thought it was then helped me to get into a rheumatologist who then helped to finally confirm it through all the proper tests. But prior, even my dentist should have seen something was wrong because of issues I kept having with my teeth. There were so many warning signs that so many of my doctors could have picked up but instead they kept sending me to this specialist and another. That is the problem here. We are sent to so many specialists for each and every issue the entire picture gets totally overlooked! I had been suffering with symptoms at least 10 years prior to my diagnosis day. Sadly, by the time I was finally diagnosed with Primary Sjogren's I had previously been falsely diagnosed with so many other diseases that even my family, with the exception of my wonderful husband, really didn't believe the diagnoses. Especially with the fact that they never heard of it. After a year of my diagnosis they finally began to live with the diagnosis but did not take it seriously. It took several more years before they would even say the name of the disease. All that they could find on it was that it was a disease of nuisances. Not too much has changed other than a small paragraph that it can affect other organs, etc. But a nuisance, it was not that for me. Not that for anyone I knew that was living with it in fact. By the 3rd year of my "confirmed" diagnoses I was already dealing with a systemic form where it had invaded many areas of my body. Today I deal with severe pain due to the periphial motor and sensory neuropathy, myositis, vasculities, reynauld's disease, and multi-organ involvement. So when I read some descriptions of Sjogren's Syndrome sometimes it does get to me because it states you will live a normal life with possibility of some disability. My old doctor stated that meant you won't die of Sjogren's. What my doctors now state is that most people do not die of SJogren's but this is not all cases. He said, "We don't inform patients that you can die from Sjogren's complications because they don't want to put that thought into their patients minds since it is a greater likelihood that they will live to a normal age, although it won't be the quality of life they had hoped for." No they would rather surprise you when the time comes and it takes a nasty turn on us like it did me. Even for me the doctor would never tell me. It took my husband finally backing him in a corner and demanding a straight answer. I lost 1 friend and 2 friends' mothers and their cause of death on their certificate was Sjogren's Syndrome. What can we expect when our own disease's national association can't admit the seriousness to us of this disease. To be honest it isn't the dying that ever scares me, it is the living for another 40 years without a cure that scares the hell out of me; because I wouldn't want this for anyone. But I am willing to fight through it as long as I have to and in the meantime pray that if a cure doesn't come in my lifetime that God does spare me that either my future gets easier or shorter by His choice.
So we have to ask ourselves why dosen't the medical community know more about this disease. There is supposedly 4 million diagnoses according to the Sjogren's Association so the numbers are high and that doesn't include those like me who took 10 years to diagnose. Why is there just a small paragraph in their medical books and in only a select few. Why isn't it being taught more than just a 1 hr session in their 8 years of schooling when it is such a detailed autoimmune disease that covers so many areas and gets so misdiagnosed? MS patients, Lupus patients, and on and on, have been misdiagnosed and really had Primary Sjogren's Syndrome! I met many at some of the Sjogren's events. I wonder how many fibromyalgia patients out there are being misdiagnosed? Because like me that was a diagnoses of elimination, even though I had positive blood tests including an ANA. But if a doctor doesn't know what is wrong then a woman either has CFS (Chronic Fatigue Syndrome) or Fibromyalgia. I too carried both diagnoses but believed it was a cop out for the doctors. It was through my own research that helped me attain my diagnoses by asking my rheumatologist for certain tests to be done including biopsies and blood tests which I was positive for all of them. As for my doctors, I have had to become their teacher. Which shows us that we should not put so much of ourselves into the white coats as they are equal to us. They just went to a different school.
Recently, I suffered a stroke and it took them 3 months to come to the conclusion it was the result of vasculities which was the result of Sjogren's Syndrome. So it was to the neurologists and cardiologists surprise that they were in new territory. My husband already knew the cause of it the day it happened. He informed the ER doctor and she wrote in the ER report Sjogren's Syndrome & vasculities, etc. During this latest episode I have had to make some changes in my care which included firing two of my 8 doctors and interviewing and rehiring. Sometimes managing our own care is more exhausting than the disease itself and it should not have to be this way. I wish it wasn't so but if we didn't manage our care, well I know I wouldn't be doing as well as I am right now. But I wish that I could concentrate more on taking care of me than having to always educate them and my family and friends. Because living with Sjogren's Syndrome is living with constantly having to explain "What is Sjogren's Syndrome?" Sometimes, I just say it is a disease that changed my life forever and just leave it at that. I know it doesn't do our disease much good in getting education out, but sometimes I am just too darn tired to explain to another person what it is or that it affects more than just dry eyes and a dry mouth, aren't you guys?
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I will definitely look for a replay of this show as I would love to see it. "House" actually had a diagnoses on his show but it really saddened me be the producer shoved it off as a nuisance in her life and all she needed to do is take some steriods and life would be cherry! How I wish that was true. I now take over 13 medications and life is not cherry. It is a constant give and take with my body and a full time job of managing my medical care which is exhausting sometimes I might add. There are days I wish I could take a break from Sjogren's and so does my husband. Him and I are a team and without him I would be walking a path alone. I know many women who walk alone and I don't know how they do it. My extended family do not understand and even my adult chidren do not. They expect of mom and that is the end of that. We don't look sick on the outside. As for the recent Learning Channel series, I wish the Sjogren's Association stayed ontop of this and notified their members and I wish there was more of this dreadful disease in the public eye and medical eye! I have suffered with Primary Sjogrens for so long and was officially diagnosed in 1999. I had seen every doctor under the sun. It was actually my Pearle Vision eye doctor who helped me in confirming what I thought it was then helped me to get into a rheumatologist who then helped to finally confirm it through all the proper tests. But prior, even my dentist should have seen something was wrong because of issues I kept having with my teeth. There were so many warning signs that so many of my doctors could have picked up but instead they kept sending me to this specialist and another. That is the problem here. We are sent to so many specialists for each and every issue the entire picture gets totally overlooked! I had been suffering with symptoms at least 10 years prior to my diagnosis day. Sadly, by the time I was finally diagnosed with Primary Sjogren's I had previously been falsely diagnosed with so many other diseases that even my family, with the exception of my wonderful husband, really didn't believe the diagnoses. Especially with the fact that they never heard of it. After a year of my diagnosis they finally began to live with the diagnosis but did not take it seriously. It took several more years before they would even say the name of the disease. All that they could find on it was that it was a disease of nuisances. Not too much has changed other than a small paragraph that it can affect other organs, etc. But a nuisance, it was not that for me. Not that for anyone I knew that was living with it in fact. By the 3rd year of my "confirmed" diagnoses I was already dealing with a systemic form where it had invaded many areas of my body. Today I deal with severe pain due to the periphial motor and sensory neuropathy, myositis, vasculities, reynauld's disease, and multi-organ involvement. So when I read some descriptions of Sjogren's Syndrome sometimes it does get to me because it states you will live a normal life with possibility of some disability. My old doctor stated that meant you won't die of Sjogren's. What my doctors now state is that most people do not die of SJogren's but this is not all cases. He said, "We don't inform patients that you can die from Sjogren's complications because they don't want to put that thought into their patients minds since it is a greater likelihood that they will live to a normal age, although it won't be the quality of life they had hoped for." No they would rather surprise you when the time comes and it takes a nasty turn on us like it did me. Even for me the doctor would never tell me. It took my husband finally backing him in a corner and demanding a straight answer. I lost 1 friend and 2 friends' mothers and their cause of death on their certificate was Sjogren's Syndrome. What can we expect when our own disease's national association can't admit the seriousness to us of this disease. To be honest it isn't the dying that ever scares me, it is the living for another 40 years without a cure that scares the hell out of me; because I wouldn't want this for anyone. But I am willing to fight through it as long as I have to and in the meantime pray that if a cure doesn't come in my lifetime that God does spare me that either my future gets easier or shorter by His choice.
So we have to ask ourselves why dosen't the medical community know more about this disease. There is supposedly 4 million diagnoses according to the Sjogren's Association so the numbers are high and that doesn't include those like me who took 10 years to diagnose. Why is there just a small paragraph in their medical books and in only a select few. Why isn't it being taught more than just a 1 hr session in their 8 years of schooling when it is such a detailed autoimmune disease that covers so many areas and gets so misdiagnosed? MS patients, Lupus patients, and on and on, have been misdiagnosed and really had Primary Sjogren's Syndrome! I met many at some of the Sjogren's events. I wonder how many fibromyalgia patients out there are being misdiagnosed? Because like me that was a diagnoses of elimination, even though I had positive blood tests including an ANA. But if a doctor doesn't know what is wrong then a woman either has CFS (Chronic Fatigue Syndrome) or Fibromyalgia. I too carried both diagnoses but believed it was a cop out for the doctors. It was through my own research that helped me attain my diagnoses by asking my rheumatologist for certain tests to be done including biopsies and blood tests which I was positive for all of them. As for my doctors, I have had to become their teacher. Which shows us that we should not put so much of ourselves into the white coats as they are equal to us. They just went to a different school.
Recently, I suffered a stroke and it took them 3 months to come to the conclusion it was the result of vasculities which was the result of Sjogren's Syndrome. So it was to the neurologists and cardiologists surprise that they were in new territory. My husband already knew the cause of it the day it happened. He informed the ER doctor and she wrote in the ER report Sjogren's Syndrome & vasculities, etc. During this latest episode I have had to make some changes in my care which included firing two of my 8 doctors and interviewing and rehiring. Sometimes managing our own care is more exhausting than the disease itself and it should not have to be this way. I wish it wasn't so but if we didn't manage our care, well I know I wouldn't be doing as well as I am right now. But I wish that I could concentrate more on taking care of me than having to always educate them and my family and friends. Because living with Sjogren's Syndrome is living with constantly having to explain "What is Sjogren's Syndrome?" Sometimes, I just say it is a disease that changed my life forever and just leave it at that. I know it doesn't do our disease much good in getting education out, but sometimes I am just too darn tired to explain to another person what it is or that it affects more than just dry eyes and a dry mouth, aren't you guys?
March 27, 2009 - 8:43amThis Comment
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