Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Robin, I appreciated your response to what to ask the doctor. Particularly when you said, " He acted like my life would go back to normal. " Well, isn't that the truth. They said I had Pancreatitis like I had the common cold. When I went and saw the Pancreatic surgeon a few weeks after I was diagnosed, the office nurse called me into the exam room, looked at my chart, and said, " Oh, man, Chronic Pancreatitis, and you are so young. " Like, what did that mean? Then the surgeon came in, reviewed my chart, and said, " Well the first thing we need to do is get you on some antidepressants and get on top of your pain " Antidepressants? I wasn't that depressed, I was sad that I had to take some time off work, but gheesh, antidepressants? I would be back at work before they even took affect. After he explained the disease process to me, totally misunderstanding what he said, I thought, why antidepressant? I will be dead before they take affect. When I was diagnosed I first saw the GI who then referred me to the Pancreatic surgeon. They said it was standard practice to have an evaluation by a surgeon so he would be aware of my situation, but mainly to be part of the interdisciplinary team they were putting together. In agreement to what Robin said, they should have then sent me to the Psychotherapist to explain that life, as I knew it, would never be the same again. It is risky to not know where the patient will be or what they will be doing when that devastating moment of clarity comes. In a sense I was fortunate because I had the Distal Pancreatectomy within 3 weeks of my initial diagnosis. While I was in the hospital a referral was made to a Psychiatrist who specialized in the care of Gastroenterology patients. Interestingly, she also taught a course to the medical school residents on understanding the psychological components of patients with alterations in the GI tract. She focused on grief and assisting the patient to begin to process of letting go of society's primal focus, food / meals / dining. Almost all social, business, personal activities focused around food. It was a while before I fully grasped what she was saying. Today, I understand too well. From formal dinner parties to pot lucks and pitch ins, fall festivals to Thanksgiving, to the personal breaking of bread in communion. Food, once the symbol of motherhood and nurturing the soul, it is now a stark reminder of the fragility of life. Following discharge from the hospital I sought out mental health resources. One phone call after another resulted in, " No, we don't bill insurance, but we'll give you the forms so you can. " At $75.00/hour to $95.00/hour, that wasn't going to happen. That should be included in discharge planning. Not simply to tell the patient that they should have mental health follow up, but review our financial situation, our insurance, and locate a provider that bills and accepts assignment for our insurance. For those without insurance or funding resources, a referral should be made somewhere that allows for sliding scale or is free. What I ended up doing was calling the Psychologist I saw while I was in patient. Incredibly she agreed to see me on an outpatient basis until something could be worked out. Again, there was this vague sense of impending doom in her concern, when she said, " That will not do, you have Chronic Pancreatitis, I will see you until we can work out other arrangements. " Hanging up, I was like, " What does that mean? " Time would tell. Fortunately my church had an active Parish Nurse Program as well as a Minister Program, so I was assigned someone who would work one on one with me, as I started down this new and unfamiliar journey. They also assigned Tull someone who would turn out to be his saving grace. It is incomprehensible to me how I could stand by and watch this catastrophic disease suck the life and energy out of someone I love, and there be absolutely nothing I could do to stop it. Their assignments were limited to helping someone walk through that first year of grief / change. I felt like I was on the underground railroad, as from there I was turned over to the gentle hands of the Christian Theological Institute, a nondenominational school for pastoral counseling & psychotherapists. Mental health services provided by senior students completing their masters' internships were available on a sliding scale to adults, couples, children, and families. Considering my income was literally $0.00 I qualified for their minimum fee of $15.00. It was a godsend, and I took full advantage of every program, and was even able to get my teenager to go. I had no idea how much she had bottled up. As most good things do come to an end, these counselors would graduate. It was upsetting because it is hard to develop a trusting relationship with someone, and I couldn't imagine having to start over with someone new. We had prepared for saying good-bye and letting go, and on what was to be our last session, she incredible invited me to be her first patient in her practice. (The truth is that they have to provide mental health services free for one year before qualifying to take the state board, which would permit them to bill clients and insurance.) I was delighted and continue to see her regularly to this day. I shared this with you, not so much that you would know my personal mental health journey, but so you will know what some of your options can be, to remind you to have hope, never give up, and know that everything, one way or another, will always work out. Blessings, Karyn E. , RN Exec. Director, PAI Indianapolis, IN The PAI serves as a means of support, information, and advocacy. The PAI cannot offer medical advice or direction nor substitute for your health care provider. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Robin, I appreciated your response to what to ask the doctor. Particularly when you said, " He acted like my life would go back to normal. " Well, isn't that the truth. They said I had Pancreatitis like I had the common cold. When I went and saw the Pancreatic surgeon a few weeks after I was diagnosed, the office nurse called me into the exam room, looked at my chart, and said, " Oh, man, Chronic Pancreatitis, and you are so young. " Like, what did that mean? Then the surgeon came in, reviewed my chart, and said, " Well the first thing we need to do is get you on some antidepressants and get on top of your pain " Antidepressants? I wasn't that depressed, I was sad that I had to take some time off work, but gheesh, antidepressants? I would be back at work before they even took affect. After he explained the disease process to me, totally misunderstanding what he said, I thought, why antidepressant? I will be dead before they take affect. When I was diagnosed I first saw the GI who then referred me to the Pancreatic surgeon. They said it was standard practice to have an evaluation by a surgeon so he would be aware of my situation, but mainly to be part of the interdisciplinary team they were putting together. In agreement to what Robin said, they should have then sent me to the Psychotherapist to explain that life, as I knew it, would never be the same again. It is risky to not know where the patient will be or what they will be doing when that devastating moment of clarity comes. In a sense I was fortunate because I had the Distal Pancreatectomy within 3 weeks of my initial diagnosis. While I was in the hospital a referral was made to a Psychiatrist who specialized in the care of Gastroenterology patients. Interestingly, she also taught a course to the medical school residents on understanding the psychological components of patients with alterations in the GI tract. She focused on grief and assisting the patient to begin to process of letting go of society's primal focus, food / meals / dining. Almost all social, business, personal activities focused around food. It was a while before I fully grasped what she was saying. Today, I understand too well. From formal dinner parties to pot lucks and pitch ins, fall festivals to Thanksgiving, to the personal breaking of bread in communion. Food, once the symbol of motherhood and nurturing the soul, it is now a stark reminder of the fragility of life. Following discharge from the hospital I sought out mental health resources. One phone call after another resulted in, " No, we don't bill insurance, but we'll give you the forms so you can. " At $75.00/hour to $95.00/hour, that wasn't going to happen. That should be included in discharge planning. Not simply to tell the patient that they should have mental health follow up, but review our financial situation, our insurance, and locate a provider that bills and accepts assignment for our insurance. For those without insurance or funding resources, a referral should be made somewhere that allows for sliding scale or is free. What I ended up doing was calling the Psychologist I saw while I was in patient. Incredibly she agreed to see me on an outpatient basis until something could be worked out. Again, there was this vague sense of impending doom in her concern, when she said, " That will not do, you have Chronic Pancreatitis, I will see you until we can work out other arrangements. " Hanging up, I was like, " What does that mean? " Time would tell. Fortunately my church had an active Parish Nurse Program as well as a Minister Program, so I was assigned someone who would work one on one with me, as I started down this new and unfamiliar journey. They also assigned Tull someone who would turn out to be his saving grace. It is incomprehensible to me how I could stand by and watch this catastrophic disease suck the life and energy out of someone I love, and there be absolutely nothing I could do to stop it. Their assignments were limited to helping someone walk through that first year of grief / change. I felt like I was on the underground railroad, as from there I was turned over to the gentle hands of the Christian Theological Institute, a nondenominational school for pastoral counseling & psychotherapists. Mental health services provided by senior students completing their masters' internships were available on a sliding scale to adults, couples, children, and families. Considering my income was literally $0.00 I qualified for their minimum fee of $15.00. It was a godsend, and I took full advantage of every program, and was even able to get my teenager to go. I had no idea how much she had bottled up. As most good things do come to an end, these counselors would graduate. It was upsetting because it is hard to develop a trusting relationship with someone, and I couldn't imagine having to start over with someone new. We had prepared for saying good-bye and letting go, and on what was to be our last session, she incredible invited me to be her first patient in her practice. (The truth is that they have to provide mental health services free for one year before qualifying to take the state board, which would permit them to bill clients and insurance.) I was delighted and continue to see her regularly to this day. I shared this with you, not so much that you would know my personal mental health journey, but so you will know what some of your options can be, to remind you to have hope, never give up, and know that everything, one way or another, will always work out. Blessings, Karyn E. , RN Exec. Director, PAI Indianapolis, IN The PAI serves as a means of support, information, and advocacy. The PAI cannot offer medical advice or direction nor substitute for your health care provider. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 In a message dated 5/21/2003 10:31:02 AM Pacific Daylight Time, KarynWms@... writes: > I shared this with you, not so much that you would know my personal mental > health journey, but so you will know what some of your options can be, to > remind you to have hope, never give up, and know that everything, one way or > > another, will always work out. > > Blessings, > > Karyn E. , RN > Exec. Director, PAI > Indianapolis, IN > > As an advocate I often read posts and think, " I wish I had the wisdom to help or answer " . I have done research, kept records, etc. but can only offer information and this has often led to an inability to " connect " . I have sat back the last two weeks, reading the posts and answers. There are always new members, many times with the same questions. I am proud of everyone that steps up to the plate and answers through their own experiences, but most proud of Karyn for providing this venue. I continue to be amazed (or horrified) at the lack of information available like you can get for cancer, diabetes, even Lupes, etc., the extra trauma caused by this, and the circle of events that continue. Perhaps with time this will change, but I am glad that Karyn takes the time and energy to provide this venue for all of you. I keep you all in my prayers, Gail Quote Link to comment Share on other sites More sharing options...
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