Another view on the Opioid Crisis - Updated in original post
Aug 28, 2019 18:00:03 GMT
shevy, lucyg, and 14 more like this
Post by missymarlin on Aug 28, 2019 18:00:03 GMT
I have followed the recent threads and the Johnson & Johnson court decision. I do have a somewhat different perspective I haven't seen mentioned on this board yet. I know this will come across as unsympathetic and I am hesitant to breach my privacy, but I doubt I am the only one in this situation. I don't understand why patients escape responsibility in this process. I am a stage IV cancer patient who has reached the point that there is no viable treatment left other than palliative care. I have already lived 3 months longer than the doctors estimated I would when I entered palliative care. I am still able to pretty well care for my basic needs. I realize that could change quickly and am thankful for those graces I have. Because I have trouble keeping food down, meal preparation is not a big issue. Soup, tea, iced diet soda, toast, popsicles and an occasional sandwich are pretty much all I can tolerate anyhow. I take opioids for pain management (25 mgs of Norco only per day which is a pretty low dose for terminal pain) and am very careful to follow the guidelines laid out by my palliative care team. There many times when my pain level is not controlled well by my current dosage, but I was raised to act responsibly, follow the rules and I do not want to alter my quality of life with addiction so I do not take more than prescribed. When I first started pain management I could order a 30 day supply of all my cancer drugs by mail rather than having to trek down to the pharmacy to physically pick them up. Then, it was decided pain meds had to be picked up in person because so many patients' drugs were going "missing" in the mail. Okay - I can no longer drive because of my cancer and medications. I don't have anyone near who can take me to the pharmacy, so I have to take a cab - a $70 round trip, but them is the rules. At the beginning of this year, my palliative program apparently found that patients were selling their meds on the street, so then I had to sign a contract promising that I will not sell them illegally (as if I ever would). Apparently, not everyone keeps their promised word as 4 months ago, they decided it was necessary to blood test patients to be certain we have the expected level of opioids in our blood to prove we are not selling our pain meds. The blood test every 90 days costs $45. I have to take a cab to the lab for the test. Sometimes I feel so badly, it is a real ordeal to do this. Then they decided to reduce my dosage of pain meds by one half because a new medical director decided it was too likely that I could become addicted. I was told I simply would have to find a way to deal with it. I started taking ibuprofen every 6 hours, but it caused more internal bleeding than just what I have because of the cancer and I was hospitalized to bring it under control. They then quickly reinstated my regular dose of pain meds. Luckily, they have not touched my different nausea drugs nor my neuropathy medications. But, the final straw is that only pharmacy my insurance has approved has decided that they will only dispense 1 week's dosage of opioids at a time. If I felt good enough to get out of my rented hospital bed, dress and take an expensive cab ride to stand in line for 30 to 45 minutes to get my medicine each week, I would not need the medicine to begin with.
I am incredibly angry because it should NOT be so hard to just get the meds I need to make the time I have left more comfortable. Since I am on a limited fixed retirement income, I can't afford $70 a week just to get to a pharmacy. My team tells me I do have the option of entering a hospice care center where I would have to share a room with another terminal patient. I don't understand why I have to give up my apartment - my home - which I love and where I am comfortable to enter a place that will take my entire income to cause me a loss of privacy at a very difficult time and provide me with a lower quality of life just because irresponsible people and their medical providers have allowed them to become addicted to opioids. I have had nothing to do with that. I do realize that at my current pace and as my illness progresses, that might eventually become my best option to enter a care center, but it should not be forced on me if I can still manage on my own. The other option my team has given me is medically assisted end of life. Not necessarily my first choice and it is very expensive to buy the specific drugs allowed by law, but it seems like that is preferable to my other options of trying to live in intractable pain or going into a care center simply because I don't feel well enough or can't afford the expense of weekly pharmacy pick-up. I am not angry I have cancer nor that it is terminal, but it really fries me that this has to be so incredibly difficult to deal with. I resent that I am now treated like a criminal or a drug addict simply because I drew the cancer card. I did nothing wrong. I have taken my medications responsibly. I feel like I am being discarded. Intentionally ending my life under these circumstances should not be the best option I have. I just don't think it is fair.
UPDATE
I am sorry for the delay in responding, I didn't mean to post and run, but yesterday was just not a good day physically.
Oh, my goodness! I am absolutely overwhelmed by the kindness and generosity of all of you! I have been in tears for hours. I just can't believe it.
I live in South San Diego County. I was born and grew up in various suburbs around and north of Chicago, but left when I was a teen. I recently answered a fellow Pea's query on what to do and see on a first trip to Chicago. Up until Fall 2017 when I got too sick, I went back, usually with my older sister, every other year or so to visit friends and relatives and just enjoy childhood memories, so I felt qualified to answer her questions, however it caused some to think I was actually living in the area.
To answer a few other questions and to clarify things. Until recently, my sister who is over 80 was able to pick up my prescriptions (she has my limited medical power of attorney). Because of her age and failing health, she is no longer able to be that physically active and though I speak with her by phone daily, her own health is a great concern for me. The pharmacy required her to register with them and of course sign her life away each time she picked up my meds. I think the only reason she was able get them for me was the medical power of attorney - particularly as of the first of this year when they started treating their terminal pain patients like more like criminals than patients.
My palliative care team consists of a medical doctor (internal medicine and geriatrics speciality) who prescribes the medications. I have been very pleased with him (except for the short time when my dosage was cut due to a new head of the department). He has been very good about trying to find combinations of meds to control my tremors and the relentless nausea. I now alternate 3 different nausea drugs to try to fool my system and he has also been able to reduce the internal bleeding. There is a Nurse Practitioner who handles things like suggestions for physical issues like bedsores and nutrition and the like. There is also a Social Worker who is the one who has been pushing the medical end of life option since I am so opposed to entering a care center. I have limited coverage for home hospice - up to 30 days and then it would cost $90 a day according to my team. I would much prefer to stay here and use the home hospice option when I approach the end. Unfortunately, since I am already 90 days past my "estimated expiration" date, timing that 30 days is tricky.
I am so grateful and appreciative for your offers of help. I hope you understand that I just wouldn't feel right accepting anything other than your prayers, good wishes and dear offers of friendship and encouragement. This community is so powerful and supportive!
Public transportation is a problem because my complex installed an access gate a couple of years ago due to the large number of homeless encamped at the nearby river and freeway overpass and the crime rate with muggings, theft and break-ins increased to the point they felt that was the only option. Unfortunately this is a large complex and I live about 3 blocks downhill from the gate. I cannot get there easily most days because it is just beyond my current physical capabilities. There is a pedestrian gate with a code, but there is no way for a vehicle to enter without a remote. I paid my cab driver an extra tip to wait at the gate for a resident to enter or exit and then sneak in before the gate closed so he could pick me up close to my apartment. That is not an option with other public modes of transportation.
There is an elderly woman.in my complex who has multiple part-time caregivers and in chatting with them while occasionally visiting her, I have the impression a couple of them would like to have more hours than her agency gives them. I am thinking maybe one of them might be willing to take on a cash job running errands or transporting me for maybe 5 hours a month. It would help with the issue of obtaining fresh groceries and medical/pharmacy trips. At a little over minimum wage, it wouldn't cost much more than the one cab ride a month I have been paying to get to the pharmacy by taxi. I plan on seeing if that might be an option. Please keep your fingers crossed it might work out.
Again, I cannot believe your compassion! I have felt pretty much alone in this so your responses have helped to heal my spirit and heart. Bless you all! And I will never forget what you have done for me!
I am incredibly angry because it should NOT be so hard to just get the meds I need to make the time I have left more comfortable. Since I am on a limited fixed retirement income, I can't afford $70 a week just to get to a pharmacy. My team tells me I do have the option of entering a hospice care center where I would have to share a room with another terminal patient. I don't understand why I have to give up my apartment - my home - which I love and where I am comfortable to enter a place that will take my entire income to cause me a loss of privacy at a very difficult time and provide me with a lower quality of life just because irresponsible people and their medical providers have allowed them to become addicted to opioids. I have had nothing to do with that. I do realize that at my current pace and as my illness progresses, that might eventually become my best option to enter a care center, but it should not be forced on me if I can still manage on my own. The other option my team has given me is medically assisted end of life. Not necessarily my first choice and it is very expensive to buy the specific drugs allowed by law, but it seems like that is preferable to my other options of trying to live in intractable pain or going into a care center simply because I don't feel well enough or can't afford the expense of weekly pharmacy pick-up. I am not angry I have cancer nor that it is terminal, but it really fries me that this has to be so incredibly difficult to deal with. I resent that I am now treated like a criminal or a drug addict simply because I drew the cancer card. I did nothing wrong. I have taken my medications responsibly. I feel like I am being discarded. Intentionally ending my life under these circumstances should not be the best option I have. I just don't think it is fair.
UPDATE
I am sorry for the delay in responding, I didn't mean to post and run, but yesterday was just not a good day physically.
Oh, my goodness! I am absolutely overwhelmed by the kindness and generosity of all of you! I have been in tears for hours. I just can't believe it.
I live in South San Diego County. I was born and grew up in various suburbs around and north of Chicago, but left when I was a teen. I recently answered a fellow Pea's query on what to do and see on a first trip to Chicago. Up until Fall 2017 when I got too sick, I went back, usually with my older sister, every other year or so to visit friends and relatives and just enjoy childhood memories, so I felt qualified to answer her questions, however it caused some to think I was actually living in the area.
To answer a few other questions and to clarify things. Until recently, my sister who is over 80 was able to pick up my prescriptions (she has my limited medical power of attorney). Because of her age and failing health, she is no longer able to be that physically active and though I speak with her by phone daily, her own health is a great concern for me. The pharmacy required her to register with them and of course sign her life away each time she picked up my meds. I think the only reason she was able get them for me was the medical power of attorney - particularly as of the first of this year when they started treating their terminal pain patients like more like criminals than patients.
My palliative care team consists of a medical doctor (internal medicine and geriatrics speciality) who prescribes the medications. I have been very pleased with him (except for the short time when my dosage was cut due to a new head of the department). He has been very good about trying to find combinations of meds to control my tremors and the relentless nausea. I now alternate 3 different nausea drugs to try to fool my system and he has also been able to reduce the internal bleeding. There is a Nurse Practitioner who handles things like suggestions for physical issues like bedsores and nutrition and the like. There is also a Social Worker who is the one who has been pushing the medical end of life option since I am so opposed to entering a care center. I have limited coverage for home hospice - up to 30 days and then it would cost $90 a day according to my team. I would much prefer to stay here and use the home hospice option when I approach the end. Unfortunately, since I am already 90 days past my "estimated expiration" date, timing that 30 days is tricky.
I am so grateful and appreciative for your offers of help. I hope you understand that I just wouldn't feel right accepting anything other than your prayers, good wishes and dear offers of friendship and encouragement. This community is so powerful and supportive!
Public transportation is a problem because my complex installed an access gate a couple of years ago due to the large number of homeless encamped at the nearby river and freeway overpass and the crime rate with muggings, theft and break-ins increased to the point they felt that was the only option. Unfortunately this is a large complex and I live about 3 blocks downhill from the gate. I cannot get there easily most days because it is just beyond my current physical capabilities. There is a pedestrian gate with a code, but there is no way for a vehicle to enter without a remote. I paid my cab driver an extra tip to wait at the gate for a resident to enter or exit and then sneak in before the gate closed so he could pick me up close to my apartment. That is not an option with other public modes of transportation.
There is an elderly woman.in my complex who has multiple part-time caregivers and in chatting with them while occasionally visiting her, I have the impression a couple of them would like to have more hours than her agency gives them. I am thinking maybe one of them might be willing to take on a cash job running errands or transporting me for maybe 5 hours a month. It would help with the issue of obtaining fresh groceries and medical/pharmacy trips. At a little over minimum wage, it wouldn't cost much more than the one cab ride a month I have been paying to get to the pharmacy by taxi. I plan on seeing if that might be an option. Please keep your fingers crossed it might work out.
Again, I cannot believe your compassion! I have felt pretty much alone in this so your responses have helped to heal my spirit and heart. Bless you all! And I will never forget what you have done for me!