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:)
Saturday, January 13, 2018
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:)
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