I have always fought for patients to have good quality of life. In order to live a good quality life we must take care of our bodies and mind. We are responsible to learn as much as we can about our own bodies from learning about our family and ancestor's health issues. We can also pay attention to our own health issues and journal our symptoms. Our symptoms such as aches and pains and unusual feelings of fatigue, depression, anxiety and anything that is making it hard for you to feel good are warning sign that something is wrong. Our bodies are amazing and they are created to signal us that something is wrong. Sometimes we need the help of a doctor to ensure that we do have a good quality life. If anyone is suffering and feels that they are being belittled or brushed of by a doctor they owe it to their self to find a doctor that will work with them to insure that they have good quality health care.
I am going to keep writing about my family's health issues concerning B12 and folate issues until doctors start understanding that these deficiencies are debilitating and if left untreated are fatal. There is a part of me that wants to blame the insurance companies that have paralyzed our doctors from thinking outside the box. I see however that a doctor dismissing a patient because a test will not be covered is irresponsible on the part of the doctor. Both the doctor and the patient need to speak to the insurance company and our government leaders to insure quality care. We can fight to insure all Americans have health insurance, but if we don't fight some of the regulations set in place by insurance companies then we have failed to insure the patient's quality of life.
I have had health issues since birth from B12 and folate deficiencies passed to me from my mother. With the help of my dad I was able to track back my health issues. Some time back in the early 2003 after several bouts of severe back pain, a back X-ray was done on me and it was determined that I had cogential anomalies of the spine. I have since learned that this was the result of a folate deficiency of my mother during pregnancy. My mother had taken prenatal vitamins and she also had a very healthy diet. She was probably unable to breakdown folic acid due to absorption and genetic issues passedfrom my grandmother who had PA. My mother then breast fed me and I did not get a lot of B12 and folate from her as it is now evident in playing a roll in my inability to walk. I was diagnosed with weak and floopy muscles as a baby and had braces that I wore to turn my feet outward as I was severely pigeon toed. My dad still has the braces. My parents were told that I may never walk. I proved them wrong and it was probably the result of a B12 deficiency from my depleted mother. When I started eat table food (meat and milk) I improved and started walking. My B12 and folate was probably rising and in the mean time my mother was suffering from extreme anxiety and a host of other health problems. She was not tested for B12 and nor was I. A simple test that could have made a huge difference in our quality of life. I wrote about my walking issues in this blog a couple of years ago as the half marathon I walked meant more to me and my dad that anyone can imagine.
Please doctors study the symptoms of B12 deficiencies and refresh yourself with the physiology behind the disease. Don't let insurance companies tell you vitamin deficiencies don't exist because our food sources are fortified. There are many people that have absorption problems for crucial vitamins. Also just because a patient is not anemic does not mean that they are not deficient. Macrocytic Anemia does usually present it self in patients until stage four of the disease and by then the deficiency has progressed and has caused neurological damage to the body.
B12 is essential for the production of red blood cells and the myelin sheaths of the nerves. A low level can be obscured by a high folic acid level. A good website to understand more about pernicious anemia is The Pernicious Anemia Society. Please help make screening for B12 routinely a part of complete blood cell counts especially if a patient is complaining of the symptoms of a B12 deficiency.
Life is beautiful !
Elizabeth:)
Tuesday, January 23, 2018
Saturday, January 13, 2018
The Truth Will Calm The Curious Mind
I awoke early this morning and started tossing and turning. My husband is still sleeping and I laid there watching him and then decided to get up. I have been hibernating since Christmas as we are having a crappy winter. We just had another winter storm come through and for the first time in 34 years my husband was released from work early due to ice. I just looked out the window and we now have several inches of snow on ice along with 35 mile wind gust. The high today will be 15 degrees. I hate to rush life but I am ready for spring.
I am sitting here and I looked up to see my medal hanging off the corner of a picture from a half marathon in 2013. I remember how proud I was that I was able to finish. My husband and I walked it along with several thousand other people. It was for the LLS in San Antonio Tx. I am amazed that I was able to finish the walk. I remember how bad I felt for weeks after that and I now know it was the pernicious anemia working on me. My adrenline must have kicked in and allowed me to finish. I then completed a 10k walk in Cleveland in May of 2015. That was my last walk as I told my husband that I just couldn't do it anymore as I was extremely fatigued and hurt all over. The body is an amazing thing as I realize now how bad I felt.
I told my husband on New Years Eve that I couldn't believe how much better I felt since being treated for the B12 deficiency. Since my childhood I had had long stretches where I felt badly and I had adapted and did not know what it was like to feel good. Feeling bad was just a way of life. Now that I feel better I never want to feel that bad again.
I think about my mother and all her health problems and how badly she must have felt. She used to clutch her head.and cry because she felt extremely agitated My dad and I understand now the cognitive issues, peripheral Neuropathy, and Raynard's that she had were probably a result of her untreated pernicious anemia. A doctor had put her on steroids and it made her anxiety worse. She was on steroids for more than 10 years. No one ever checked her B12 levels that we know of. She also had Sjorgens disease and Rheumatoid Arthritis. I think her death traumatized the whole family. Perhaps a different outcome if someone had checked those B12 levels as she was diagnosed with low red blood cell count and a high MCV by a hematologist that dismissed her as he said he didn't know what was causing it. We can't turn back time but we can certainly learn from such a horrific death.
Her death certainly played a part in my anxiety during my husband's cancer journey and I believe that I was in denial about my own heath issues. I did not want anyone to die the way my mother did. I have spent the last six years of my life trying to heal my mind and body. My curious mind can rest now knowing that under all the suffering my mother endured she loved me. She was just beneath a mountain of pain.
Those smiles from god will surely be blooming this spring !
Life is beautiful !
Elizabeth:)
I am sitting here and I looked up to see my medal hanging off the corner of a picture from a half marathon in 2013. I remember how proud I was that I was able to finish. My husband and I walked it along with several thousand other people. It was for the LLS in San Antonio Tx. I am amazed that I was able to finish the walk. I remember how bad I felt for weeks after that and I now know it was the pernicious anemia working on me. My adrenline must have kicked in and allowed me to finish. I then completed a 10k walk in Cleveland in May of 2015. That was my last walk as I told my husband that I just couldn't do it anymore as I was extremely fatigued and hurt all over. The body is an amazing thing as I realize now how bad I felt.
I told my husband on New Years Eve that I couldn't believe how much better I felt since being treated for the B12 deficiency. Since my childhood I had had long stretches where I felt badly and I had adapted and did not know what it was like to feel good. Feeling bad was just a way of life. Now that I feel better I never want to feel that bad again.
I think about my mother and all her health problems and how badly she must have felt. She used to clutch her head.and cry because she felt extremely agitated My dad and I understand now the cognitive issues, peripheral Neuropathy, and Raynard's that she had were probably a result of her untreated pernicious anemia. A doctor had put her on steroids and it made her anxiety worse. She was on steroids for more than 10 years. No one ever checked her B12 levels that we know of. She also had Sjorgens disease and Rheumatoid Arthritis. I think her death traumatized the whole family. Perhaps a different outcome if someone had checked those B12 levels as she was diagnosed with low red blood cell count and a high MCV by a hematologist that dismissed her as he said he didn't know what was causing it. We can't turn back time but we can certainly learn from such a horrific death.
Her death certainly played a part in my anxiety during my husband's cancer journey and I believe that I was in denial about my own heath issues. I did not want anyone to die the way my mother did. I have spent the last six years of my life trying to heal my mind and body. My curious mind can rest now knowing that under all the suffering my mother endured she loved me. She was just beneath a mountain of pain.
Those smiles from god will surely be blooming this spring !
Life is beautiful !
Elizabeth:)
Thursday, January 11, 2018
Insurance Companies Control Our Health Care
Winter gave us a break today and I went outside in 50 degree weather. We went from eleven days of Arctic freeze, 6 inches of snow and an ice storm to spring like weather. Never fear winter will return Friday and we are expecting another winter storm. What a roller coaster we are on. Between the weather and the flu outbreak I have been hibernating. Please spring hurry up and get here and stay.
The price of prescriptions has been a real shocker for a lot of people as the new year begins. I went yesterday to pick up some medications to hear the pharmacist say there was a 60 dollar increase in our co-pay from the insurance company. That was an increase for the generic as the insurance company will not cover the brand name. I was told to ask what the cost of the generic was without insurance and it was over 500 dollars for a month supply. Please someone stop this price gouging. I am fortunate that I can afford the drastic increase and felling empathy for those who can not afford it. Imagine someone taking a life saving medication not being able to afford the increase. It makes me mad and I feel that it is pure greed.
Also I am disturbed to know that finding a doctor that understands this pernicious anemia isn't easy. The doctor who diagnosed me was a board certified Internal Medicine specialist and my insurance company will not pay for me to continue to see him. They said he is out of network. He referred me to my PCP for maintenance of the disease two years ago and that did not go well. I am seeing that this disease should really be monitored by a Hematologist that has full understanding of it.
As I went on a journey to educate myself about the pernicious anemia, I was amazed about how much bad information was on the Internet. Being a RN, I was able to steer myself to reliable and trusted information based on research and physiology of the disease. I have feel empathy for the people who have no medical education and may rely on misleading information from the Internet or have a doctor that does not understand how debilitating the disease is. It is a disease that can be treated and once it is controlled people can live healthy and happy lives.
I have been suffering with this illness since childhood. It was never diagnosed correctly and I spent years feeling like heck. I was so relieved when I finally got diagnosed and was put on the B12 tablets. The specialist was the first to ever check my B12 despite some very obvious discrepancies in my blood work since childhood. Unfortunately because of being dismissed over the years by other doctors for my symptoms I now have some permanent damage. I don't lay blame just to the doctors but a health care system that lets insurance companies dictate protocols that doctors follow. People are unique and standard levels of blood test do not mean that a patient is feeling well. I have heard doctors tell patients there is nothing wrong when their blood test comes back with readings that are either on a cut off range or point below. The patient however is suffering with symptoms. I also blame a health care system where someone decided that checking B12 levels are not a routine part of a CBC. I have also learned that anemia does not always show up even though the patient is suffering from the debilitating symptoms of low B12. I was told they don't check B12 levels because our food is fortified with vitamins and people don't have vitamin deficiencies in this day and time. For people like me that have genetic anomalies no matter how healthy we eat we have trouble absorbing and storing those vitamins. Routine screening could have saved me a lifetime of suffering.
My first B12 level was drawn in November of 2015. It has not been checked since because I was told it was not necessary. I was also told by two PCP's that I shouldn't take B12 supplements nor VitD for which I have had two severe deficiencies. I checked in with the doctor that diagnosed me and he told me to keep taking the B12 and the Vit D3 and look for a new PCP. I have since learned that most people with B12 deficiency also have VitD deficiency. They are linked to absorption problems and since both vitamins are stored in the liver it is wise to make sure you have a healthy liver. My blood work shows a healthy liver. My bone scan in 2012 showed severe osteoporosis. I have fought to get my Vit D levels checked and have even agreed to pay for the test myself. I have since educated myself and will continue to take my VitD3 along with magnesium,calcium. and weight bearing exercise.
It is very important to get the right diagnosis as there are different types of B12 and depending on your health problems and you should be treated accordingly.. Deficiencies of B12 can be from a vegan diet, alcoholism, liver disease, medications, and of course genetic anomalies, The symptoms of a deficiency can be viewed on the website Pernicious Anemia Society. Out of the list I had all of the symptoms but one.
I wish I had known all that I know now about the genetic part of the disease and maybe someone would have listened earlier. I blame myself for not realizing that this was a genetic disease of my family.
My advice to people is to educate yourself about family health history as far back as you can and make sure your doctor knows. If you know you have a disease or suspect you do and you are not getting the help you need from your doctor ask for referrals to find someone that can help you live a good quality life. I remember something that my husband's oncologist told us seven years ago. For a patient to get the best care they should seek a specialist when dealing with a cancer or other life threatening disease. He meant a specialist that specializes specifically with your type of cancer instead of someone who treats many different cancers because it is difficult for any doctor to keep up with all the new research. That was good advice for everyone no matter what the disease.
Be your own advocate and seek the the good quality life you deserve. There is a reason you have symptoms they are warning signals that something is wrong. Don't let someone call you a hypochondriac. You deserve to live a good quality life. You are worthy of good health !
Life is beautiful !!
Elizabeth:)
The price of prescriptions has been a real shocker for a lot of people as the new year begins. I went yesterday to pick up some medications to hear the pharmacist say there was a 60 dollar increase in our co-pay from the insurance company. That was an increase for the generic as the insurance company will not cover the brand name. I was told to ask what the cost of the generic was without insurance and it was over 500 dollars for a month supply. Please someone stop this price gouging. I am fortunate that I can afford the drastic increase and felling empathy for those who can not afford it. Imagine someone taking a life saving medication not being able to afford the increase. It makes me mad and I feel that it is pure greed.
Also I am disturbed to know that finding a doctor that understands this pernicious anemia isn't easy. The doctor who diagnosed me was a board certified Internal Medicine specialist and my insurance company will not pay for me to continue to see him. They said he is out of network. He referred me to my PCP for maintenance of the disease two years ago and that did not go well. I am seeing that this disease should really be monitored by a Hematologist that has full understanding of it.
As I went on a journey to educate myself about the pernicious anemia, I was amazed about how much bad information was on the Internet. Being a RN, I was able to steer myself to reliable and trusted information based on research and physiology of the disease. I have feel empathy for the people who have no medical education and may rely on misleading information from the Internet or have a doctor that does not understand how debilitating the disease is. It is a disease that can be treated and once it is controlled people can live healthy and happy lives.
I have been suffering with this illness since childhood. It was never diagnosed correctly and I spent years feeling like heck. I was so relieved when I finally got diagnosed and was put on the B12 tablets. The specialist was the first to ever check my B12 despite some very obvious discrepancies in my blood work since childhood. Unfortunately because of being dismissed over the years by other doctors for my symptoms I now have some permanent damage. I don't lay blame just to the doctors but a health care system that lets insurance companies dictate protocols that doctors follow. People are unique and standard levels of blood test do not mean that a patient is feeling well. I have heard doctors tell patients there is nothing wrong when their blood test comes back with readings that are either on a cut off range or point below. The patient however is suffering with symptoms. I also blame a health care system where someone decided that checking B12 levels are not a routine part of a CBC. I have also learned that anemia does not always show up even though the patient is suffering from the debilitating symptoms of low B12. I was told they don't check B12 levels because our food is fortified with vitamins and people don't have vitamin deficiencies in this day and time. For people like me that have genetic anomalies no matter how healthy we eat we have trouble absorbing and storing those vitamins. Routine screening could have saved me a lifetime of suffering.
My first B12 level was drawn in November of 2015. It has not been checked since because I was told it was not necessary. I was also told by two PCP's that I shouldn't take B12 supplements nor VitD for which I have had two severe deficiencies. I checked in with the doctor that diagnosed me and he told me to keep taking the B12 and the Vit D3 and look for a new PCP. I have since learned that most people with B12 deficiency also have VitD deficiency. They are linked to absorption problems and since both vitamins are stored in the liver it is wise to make sure you have a healthy liver. My blood work shows a healthy liver. My bone scan in 2012 showed severe osteoporosis. I have fought to get my Vit D levels checked and have even agreed to pay for the test myself. I have since educated myself and will continue to take my VitD3 along with magnesium,calcium. and weight bearing exercise.
It is very important to get the right diagnosis as there are different types of B12 and depending on your health problems and you should be treated accordingly.. Deficiencies of B12 can be from a vegan diet, alcoholism, liver disease, medications, and of course genetic anomalies, The symptoms of a deficiency can be viewed on the website Pernicious Anemia Society. Out of the list I had all of the symptoms but one.
I wish I had known all that I know now about the genetic part of the disease and maybe someone would have listened earlier. I blame myself for not realizing that this was a genetic disease of my family.
My advice to people is to educate yourself about family health history as far back as you can and make sure your doctor knows. If you know you have a disease or suspect you do and you are not getting the help you need from your doctor ask for referrals to find someone that can help you live a good quality life. I remember something that my husband's oncologist told us seven years ago. For a patient to get the best care they should seek a specialist when dealing with a cancer or other life threatening disease. He meant a specialist that specializes specifically with your type of cancer instead of someone who treats many different cancers because it is difficult for any doctor to keep up with all the new research. That was good advice for everyone no matter what the disease.
Be your own advocate and seek the the good quality life you deserve. There is a reason you have symptoms they are warning signals that something is wrong. Don't let someone call you a hypochondriac. You deserve to live a good quality life. You are worthy of good health !
Life is beautiful !!
Elizabeth:)
Subscribe to:
Posts (Atom)