I remember a couple of years ago when I was in the midst of caring for my husband and my dad that my daughter made a statement that things looked different to her from the outside looking in. She was talking to me when I was very anxious and concerned about my job as caregiver. I would talk to her about how tired and frustrated I was at times and appeared to be very emotional. She would feel free at times to express her opinion about situations that she had not been a part of or had experienced. It was hurtful at times but I respected her right to her opinion and at times I prayed she would never have to be in my position. I felt that I tried my best to protect my children from the ugly parts of care giving. The part where you have to step up to the plate no matter how bad you feel and take charge. The part where you are all alone and have given up your life to help someone you love. It is the part of care giving we don't like to talk about and the part others don't want to hear. Perhaps because someday it may be them.
From the inside looking out, I would like to give a brutal glimpse. I feel I have a right to be heard. It is the unspoken words of how you feel, but you try to hide it from family and friends because everyone is counting on you to take care of your loved ones. It is not an easy job as it comes with great sacrifices and at the same time it can make you feel good that you have been able to share even a difficult experience with someone you love. You are proud that you were able to get them through a rough time in their life. The outcome is not always a happy ending. We do what we have to do because we love one another. It is called compassion. As mothers we try to protect our children from the bad news, because we know that it is not easy dealing with the fact that our parents are ill. When you are young your life should be focused on living and having fun.
There is however a realization that sometimes the caregiver gets ill. I made the mistake of thinking that it was better to smile through the pain of my own life. I have been taking care of family since I was in my twenties. I kept a lot to myself about not feeling well perhaps it is part of my personality to be stubborn and push through pain and put myself last. However I am very hurt that I have been dismissed as being someone that is seeking attention. I kept my illness tucked quietly in my heart. I have heard from doctors that I was lazy, and I should just focous on my husband. I even had a doctor goes as far as to tell me I was mentally ill and making up an illness to get attention. I was very hurt by the statement as I walked out of the office thinking I am not even allowed to get medical help. I have even had my own family tell me you don't look sick. I guess I missed the class on how to be a patient. I have heard from people that said to me you need to take care of yourself. Believe me when I say that I have tried. It is not an easy road when you are in someone's shadow.
I don't blame anyone for their illness or mine. I was disappointed in the health care profession that dismissed my illness as something in my head. In fact that I had to demand that someone help me when I was too ill to go on. I still kept smiling and pushing myself to protect the people I love. I do have feelings and perhaps sometimes I just wish someone would acknowledge that I am not immortal. I do feel bad some days so excuse me while I rest or cry. I won't waste too much time, because I am strong and I see that living is the best thing to do when others are looking from the outside in.
Try to remember that someday you may be looking from the inside out and I hope that you will get the help you need and you will be noticed. The best advice I have for caregivers is that you deserve to take sick days and that you need to be your own best advocate. Sometimes you have to quit protecting others and look out for yourself.
Well, excuse me I am feeling good now and I have a lot of living to catch up on.
God bless all patients and caregivers !!
Life is beautiful !!
Elizabeth:)
Friday, February 23, 2018
Tuesday, January 23, 2018
Dear Doctors B12 and Folate Deficiencies Are Real and Debilitating For Patients
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:)
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:)
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