Today is Friday and the weekend is here and for most people that means time to let loose and have some fun. Yes, It is TGIF!! I know my husband is counting down the hours at work after many years he will tell you straight up that he is burned out. It happens to a lot of people no matter what the occupation.
So I thought a little humor will start the weekend off. I ended my affair with Tom and Jerry. I told them they were no longer allowed in my life and my husband was so understanding of them and allowed me to have the affair. Ben and Jerry have been feeding my emotional problems by supplying me with strawberry shortcake. It was so rich and creamy and I was addicted. In case you are wondering Ben and Jerry is the name of the ice cream that has brought much comfort to me for the last three years. I don't drink alcohol and I don't do drugs so I did Ben and Jerry. I have been without them for two weeks.
I left them locked in the freezer and I could hear them hollering what the F#$k. I left them their just for an emergency. You know just in case I fall off the wagon. I hope I can remain clean. I have lost two of the five pounds they caused me to gain. I guess if I had to have a vice it wasn't as bad as some that I can think of.
I have to give Ben and Jerry credit for delicious ice cream. I tried many different brands, but they were my addiction at a high price. I had to let the dairy fat go. The sugar was making me crave more sugar. The first few days was tough, but I made it. I switched over to some low carb fruit.
Thank you Ben and Jerry for validating my emotional needs and getting me through the tough times. We need to let loose sometimes and take care of ourselves. Have a great weekend!
Life is beautiful !!
Elizabeth:)
Friday, July 21, 2017
Tuesday, July 18, 2017
Learning To Be Your Own Patient Advocate
I try to write from my heart and be honest about what is really bothering me. They say the truth will set you free. We all remember the bad things that happen to us and to hold them internally only let's them live forever in us. It is like a disease that festers inside until it eats you alive. I always encouraged people to talk about what is really bothering them. I have found that talking to others about the things that hurt so much decreases their ability to grow inside of me. Other people's perspectives allow me to see things in a different light. Journaling let's me see my own thoughts and sometimes rereading my posts' allows me to view situations from a different perspective. It diffuses situations and allows me to let go of the burden of keeping them inside.
As time goes on my vulnerability to the trauma of cancer has weakened and the external world no longer feels as a threat. I am still working on my own internal threat. We are our own worse critic and judge ourselves more than anyone. We look to others to understand why the pain is still there. I read stories from other caregivers and I see my reflection in their stories and I know that I am not alone. I have a few more things to write about that possibly could have made this journey a little less traumatic.
I was taught as most are to follow the rules set forth at a job or an institution where I am seeking help or services. They are standards set by administration and departments to safeguard people and insure that they get the best quality care. I am referring to the patient advocates provided at hospitals or cancer centers. They are people that help you with situations that occur and they try to help you make good decisions about your care. They have a set of standards that they follow and they provide the patient with a set of standards they expect the patient to follow.
My husband and I had some things that were of very much importance to us while he was in treatment for cancer. . We were scared as any cancer patients are and we thought that we were confiding with a patient advocate who would help us. We had asked to speak with the doctor after my husband's first treatment appointment, as I am not a fan of letting others speak for me. It seems from the experience we have had people say things that misrepresented us. I have learned a valuable lesson to never let a patient advocate speak for me when I am not present. If they can not accompany my husband and I to an appointment then they will not have the right to represent us. We learn from our mistakes and we will never let one of the advocates tell us again that we are not to ask any questions to the doctor or question the treatment. My husband and I in our vulnerable state let the advocate represent the institution and the doctor. He broke our confidentiality and he did not allow us to form a trusting relationship with the doctor. We tried to do the right thing and we never said anything about the character of any worker at the center. We did state some concerns about remarks that were made to us and we did not understand them.
We did not know if and when the advocate had spoke with the doctor, because he never returned our calls or followed up with us. We did however figure out by remarks from staff and doctor that he had told them something. I feel a great mistrust being represented by someone's interpretation of our pain. We were the people that were present when the unpleasant situations occurred and we did not deserve for a patient advocate to tell their version of the story without us and the other parties present..
I am not sure I understand the mentality of not letting a patient speak to the doctor. The doctor is the person prescribing what is happening with our life. We only get one chance with life and we better pick someone that we trust and feel that they can help us get through the scary and hard times. We were told on several occasions not to ask the doctor any questions. However on one occasion after the second treatment my husband did question the doctor about one of the drugs he was taking and my husband was afraid of the drug. The doctor seemed abrupt with his answer and his facial expression along with tone of voice struck a dislike in both of us. I can always read my husband's face and I felt his uncomfortable state of mind and we both left the office that day feeling very uneasy. My husband asked me not to say anything as he felt he was at the mercy of the doctor and he was scared. So, I stopped speaking and tried to discuss my fears at support groups.
After a long thought I have come to my own conclusion based on other remarks from the doctor that he wanted his only job to be prescribing the chemotherapy. He is however the person who took away all my husband's privileges of seeing a PA and the visits with the PA between doctor visits. We however did not ask for that. We asked if when my husband had cardiology appointments he could see the cardiologist, because we were told after the initial visit he would be seen by which ever PA was on call . We would be seeing someone quite often as n=my husband was having his heart monitored while under chemo treatment. We were told the cardiologist only did the initial visits. My husband had had a bad experience in the past with a PA at home and he felt very uneasy about that decision. Whenever you get too many people involved in the care of someone there is greater chance of mistakes and very confusing for the patient. I am sorry if our oncologist did not like the request, but it did not have anything to do with he or his coworkers in the Lymphoma department.
I wish that I could go back and change things, but the past is gone and the trusting relationship was broken. Despite three years of difficult times my husband is doing well and that was our goal. We have learned a lot about being our own advocate and we know now that we need to feel comfortable with the doctor to speak about the treatment that is affecting our life, so that we will have the best quality life. Our insurance company had no problems paying for the expertise of the doctor.
We have had our eyes opened to the broken medical profession. We are sorry that doctors are overwhelmed by the amount of patients they see and all the rules and regulations set forth by administrators, insurance companies, and the government. The only people that can change this is the doctors who speak up. They hold the key to change the system and demand that they see less patients. If they are not heard by administrators and people making choices for them, then they will have to make the choice of whether to continue to work under pressure or find another place to practice. The patient deserves a doctor who will listen to them and has a vested interest in making sure that the patient's quality of life is being respected.
On a happy note my husband has a cardiologist that said something recently that really helped him to get back to living. He said, "I am the doctor and let me do the worrying and figure out what is best for you, so you can enjoy life. " Amen to that.!
So, I have dumped the last of heartache of this journey and my husband and I are focusing on a new journey called retirement. It is going to be a couple of more years, but the planning has begun and the new goals give us purpose and an exciting journey called living.
Life is beautiful !
Elizabeth:)
As time goes on my vulnerability to the trauma of cancer has weakened and the external world no longer feels as a threat. I am still working on my own internal threat. We are our own worse critic and judge ourselves more than anyone. We look to others to understand why the pain is still there. I read stories from other caregivers and I see my reflection in their stories and I know that I am not alone. I have a few more things to write about that possibly could have made this journey a little less traumatic.
I was taught as most are to follow the rules set forth at a job or an institution where I am seeking help or services. They are standards set by administration and departments to safeguard people and insure that they get the best quality care. I am referring to the patient advocates provided at hospitals or cancer centers. They are people that help you with situations that occur and they try to help you make good decisions about your care. They have a set of standards that they follow and they provide the patient with a set of standards they expect the patient to follow.
My husband and I had some things that were of very much importance to us while he was in treatment for cancer. . We were scared as any cancer patients are and we thought that we were confiding with a patient advocate who would help us. We had asked to speak with the doctor after my husband's first treatment appointment, as I am not a fan of letting others speak for me. It seems from the experience we have had people say things that misrepresented us. I have learned a valuable lesson to never let a patient advocate speak for me when I am not present. If they can not accompany my husband and I to an appointment then they will not have the right to represent us. We learn from our mistakes and we will never let one of the advocates tell us again that we are not to ask any questions to the doctor or question the treatment. My husband and I in our vulnerable state let the advocate represent the institution and the doctor. He broke our confidentiality and he did not allow us to form a trusting relationship with the doctor. We tried to do the right thing and we never said anything about the character of any worker at the center. We did state some concerns about remarks that were made to us and we did not understand them.
We did not know if and when the advocate had spoke with the doctor, because he never returned our calls or followed up with us. We did however figure out by remarks from staff and doctor that he had told them something. I feel a great mistrust being represented by someone's interpretation of our pain. We were the people that were present when the unpleasant situations occurred and we did not deserve for a patient advocate to tell their version of the story without us and the other parties present..
I am not sure I understand the mentality of not letting a patient speak to the doctor. The doctor is the person prescribing what is happening with our life. We only get one chance with life and we better pick someone that we trust and feel that they can help us get through the scary and hard times. We were told on several occasions not to ask the doctor any questions. However on one occasion after the second treatment my husband did question the doctor about one of the drugs he was taking and my husband was afraid of the drug. The doctor seemed abrupt with his answer and his facial expression along with tone of voice struck a dislike in both of us. I can always read my husband's face and I felt his uncomfortable state of mind and we both left the office that day feeling very uneasy. My husband asked me not to say anything as he felt he was at the mercy of the doctor and he was scared. So, I stopped speaking and tried to discuss my fears at support groups.
After a long thought I have come to my own conclusion based on other remarks from the doctor that he wanted his only job to be prescribing the chemotherapy. He is however the person who took away all my husband's privileges of seeing a PA and the visits with the PA between doctor visits. We however did not ask for that. We asked if when my husband had cardiology appointments he could see the cardiologist, because we were told after the initial visit he would be seen by which ever PA was on call . We would be seeing someone quite often as n=my husband was having his heart monitored while under chemo treatment. We were told the cardiologist only did the initial visits. My husband had had a bad experience in the past with a PA at home and he felt very uneasy about that decision. Whenever you get too many people involved in the care of someone there is greater chance of mistakes and very confusing for the patient. I am sorry if our oncologist did not like the request, but it did not have anything to do with he or his coworkers in the Lymphoma department.
I wish that I could go back and change things, but the past is gone and the trusting relationship was broken. Despite three years of difficult times my husband is doing well and that was our goal. We have learned a lot about being our own advocate and we know now that we need to feel comfortable with the doctor to speak about the treatment that is affecting our life, so that we will have the best quality life. Our insurance company had no problems paying for the expertise of the doctor.
We have had our eyes opened to the broken medical profession. We are sorry that doctors are overwhelmed by the amount of patients they see and all the rules and regulations set forth by administrators, insurance companies, and the government. The only people that can change this is the doctors who speak up. They hold the key to change the system and demand that they see less patients. If they are not heard by administrators and people making choices for them, then they will have to make the choice of whether to continue to work under pressure or find another place to practice. The patient deserves a doctor who will listen to them and has a vested interest in making sure that the patient's quality of life is being respected.
On a happy note my husband has a cardiologist that said something recently that really helped him to get back to living. He said, "I am the doctor and let me do the worrying and figure out what is best for you, so you can enjoy life. " Amen to that.!
So, I have dumped the last of heartache of this journey and my husband and I are focusing on a new journey called retirement. It is going to be a couple of more years, but the planning has begun and the new goals give us purpose and an exciting journey called living.
Life is beautiful !
Elizabeth:)
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