Left a tearful message for my urogyn on the answering machine. I probably am going to be locked up for the next 72 hours now.
I was very very honest with him. You all know about the letter I sent him. He sees that I am literally willing to risk my kidneys - to stay on the Cyclosporine-A - so surely he MUST know I am in pain, right? I have shown him literature that says the pain of IC is equivalent to cancer pain. He even knows the new name of the disease is Painful Bladder Syndrome (soon to be Bladder Pain Syndrome, I think.) Anyway, all of that SHOULD give him a clue that this disease DOES involve pain.
So I left a message for him (actually it will be screened by his assistant, an Air Force Sergeant, and I am sorry she is going to hear this because I know it will upset her) to the effect of, I am asking you one last time for Ultram. I need 80 Ultram per month in order to have a reasonable quality of life.
I reminded him again that I am in pain. Asked him if he believed I was in pain or not. Told him yesterday I went back to taking 3 CyA per day. Reminded him of my letter to Dr. J. stating I wish to decline dialysis and be made comfortable while I die instead. So he knows what that means. And I said - go ahead and lock me up for 72 hours - you can't keep me locked up forever.
At that point I started crying. I talked about going to meet God, and having to answer as to why I was there....and saying I would point at my doctors. Telling him I've been doing this dance with doctors - about 20 of them I think total - for six years, and all of them have left me with untreated pain. I have not found one doctor willing to just prescribe me the Ultram I need. Instead, I have had to get Ultram by other means, means that insult my integrity. It's not right, I should not have been forced to do those things.
My friend has back pain off and on. Her doctor prescribes her these big huge bottles of Ultram. My friend's pain is easily handled by motrin, so she usually takes motrin. My friend has never stayed up all night because of back pain. Care to guess how many nights I've stayed up because of bladder pain?
Her doctor gives her these huge bottles of Ultram (guess where I got the Ultram, folks? No, I did not steal it. My friend knows the situation I am in regarding doctors. My friend is very compassionate. I am furious that I have had to rely on the mercy of friends because my doctors have all failed me.)
I told my doctor I had nothing left to lose. I was sobbing so much by this point, I doubt if he could understand me. I told him, I was asking him one last time for help relieving my pain.
Oh, earlier in the conversation, I told him why pain management won't work (he offered to send me there.) You see, pain management (I've already done that, too) will not just give you pain meds to use as needed. They want you on narcotics (has to be narcotics, apparently ultram doesn't show up in piss test) 24/7 so they can get the expected amount of the drug in the urine. It does not matter that you don't have pain 24/7 but only at night and sometimes during the day. Does not matter. It does not matter that you get increased pain by going on the drugs 24/7 to the point where you are in less pain off the drugs than on them. None of that matters.
So you see, I have been failed by pain management, I have been failed by my doctors.
Now I have made the situation perfectly clear to my doctor. We will see what happens. Most likely I will be locked up for 72 hours, and then still denied any help with the pain.
Any of you ever broken down with your doctors? I wonder why they never "hear" us?
I told him I've done the untreated pain for six years now. I told him I've reached my psychological limit, that I just can't do this anymore. He can either watch me go into ESRD or he can help me with the pain.
Blessings,
Lori
I was very very honest with him. You all know about the letter I sent him. He sees that I am literally willing to risk my kidneys - to stay on the Cyclosporine-A - so surely he MUST know I am in pain, right? I have shown him literature that says the pain of IC is equivalent to cancer pain. He even knows the new name of the disease is Painful Bladder Syndrome (soon to be Bladder Pain Syndrome, I think.) Anyway, all of that SHOULD give him a clue that this disease DOES involve pain.
So I left a message for him (actually it will be screened by his assistant, an Air Force Sergeant, and I am sorry she is going to hear this because I know it will upset her) to the effect of, I am asking you one last time for Ultram. I need 80 Ultram per month in order to have a reasonable quality of life.
I reminded him again that I am in pain. Asked him if he believed I was in pain or not. Told him yesterday I went back to taking 3 CyA per day. Reminded him of my letter to Dr. J. stating I wish to decline dialysis and be made comfortable while I die instead. So he knows what that means. And I said - go ahead and lock me up for 72 hours - you can't keep me locked up forever.
At that point I started crying. I talked about going to meet God, and having to answer as to why I was there....and saying I would point at my doctors. Telling him I've been doing this dance with doctors - about 20 of them I think total - for six years, and all of them have left me with untreated pain. I have not found one doctor willing to just prescribe me the Ultram I need. Instead, I have had to get Ultram by other means, means that insult my integrity. It's not right, I should not have been forced to do those things.
My friend has back pain off and on. Her doctor prescribes her these big huge bottles of Ultram. My friend's pain is easily handled by motrin, so she usually takes motrin. My friend has never stayed up all night because of back pain. Care to guess how many nights I've stayed up because of bladder pain?
Her doctor gives her these huge bottles of Ultram (guess where I got the Ultram, folks? No, I did not steal it. My friend knows the situation I am in regarding doctors. My friend is very compassionate. I am furious that I have had to rely on the mercy of friends because my doctors have all failed me.)
I told my doctor I had nothing left to lose. I was sobbing so much by this point, I doubt if he could understand me. I told him, I was asking him one last time for help relieving my pain.
Oh, earlier in the conversation, I told him why pain management won't work (he offered to send me there.) You see, pain management (I've already done that, too) will not just give you pain meds to use as needed. They want you on narcotics (has to be narcotics, apparently ultram doesn't show up in piss test) 24/7 so they can get the expected amount of the drug in the urine. It does not matter that you don't have pain 24/7 but only at night and sometimes during the day. Does not matter. It does not matter that you get increased pain by going on the drugs 24/7 to the point where you are in less pain off the drugs than on them. None of that matters.
So you see, I have been failed by pain management, I have been failed by my doctors.
Now I have made the situation perfectly clear to my doctor. We will see what happens. Most likely I will be locked up for 72 hours, and then still denied any help with the pain.
Any of you ever broken down with your doctors? I wonder why they never "hear" us?
I told him I've done the untreated pain for six years now. I told him I've reached my psychological limit, that I just can't do this anymore. He can either watch me go into ESRD or he can help me with the pain.
Blessings,
Lori
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