Posted 8/16/2009 11:02 AM (GMT -6)
I had brought up the point that everywhere I read about it people say that "I had to have mine Rx'ed at every 48 hours because they wore off". My old doc just told me he could not (would not?) prescribe them any other way. This is part of the reason I found a new doc. When I tried the name brand patches and they didn't make me as sick (but cost me over $500 a month) and I told the doc that I couldn't keep that up, his wife/nurse made sure to announce loud enough for everyone in the building to hear that "you can either go with what we will give you or try to tough it out and probably end up in the hospital." I let that one go, this was probably about 4 months ago now.
What finally pushed me over the edge was that the last time I went to call in my refill, they never called me back. I wait until I am on my last patch and if that is going to be "gone" over the weekend, like say on a Sunday, I call on Thursday so that they have a little time to get them done and I still have enough time to make sure I can make the 2 hour round trip to pick it up (I live in the middle of nowhere). Ok, now that I have explained that I am never really early calling in a refill, I can explain a little about what I go through before actually getting to make that call....
Every month I deal w/extreme pain and withdrawal sickness approx. 1/4 to 1/2 the time, the entire month, regardless. This is when I am fortunate enough to keep the stupid things on. MOST of the time, I lose at least 2 patches when they come off and become too dirty to "salvage". I have picked dirt, dog hair (we have a 120lb Golden and I don't know how he loses so much hair and isn't bald, it is crazy), rocks, grass, you name it out of these things. I have had to fish them out of the shower drain, the toilet, pull them off the bed sheets, parking lots, sidewalks, etc. I have used tweezers to pick the debris out of the gel, I have had to just deal with the junk stuck to them, I have had to just throw out the bad ones and go without for the entire 72 hours when I am very unlucky. I hold these patches on with my hands when I am sleeping (my wife tells me I do this in my sleep, etc.) because when it gets bad, I sweat buckets at night and they fall right off. They are particularly hard to get off of cloth when they fall off at night and I end up on top of them in my sleep and do not realize it until I wake up in way more pain than I should be. BUT nothing is quite as bad as trying to peel them off of hot concrete after not catching that it fell off in the car and fell onto the parking lot when I got out. I have cried when most of these patches came off on the pavement and there was nothing left to even tape it on. I cry because I know they wouldn't refill it even a day early and wouldn't believe me if I told them what happened. I have explained this to them every time I see them and they never even bother to answer what I should do when this happens. He just nodded his head and said "uh huh, uh huh" and then runs out of the room as fast he can and makes sure he is in another room w/another patient before I am allowed out of the exam room. I never tried to corner him and force an answer out of him for fear that he will ask me to leave his practice. I do not want to be a "problem patient".
So I go through days and days of hell, even when I can keep them from being destroyed. When they do get too bad to save, sometimes I cannot take it and have to put on another one after two days of being unmedicated. I try not to do this because I will just have to end up being completely unmedicated waiting for the next time I will not be a day early. So I usually just have to "deal w/it" until I can get another refill. Ok, I don't want to do this to death because I could go on for what will seem like forever w/horror story after horror story of times I find my patch has fallen off and is too bad to do anything to save it. Sometimes this can be ok. When they come off in the last 24 hours I just think "well, it doesn't really matter anyway, does it? It wouldn't do anything for me anyway so it might as well go into the toilet or the trash." Somehow I find these times more troubling than the times when it falls off after only having it on for 2 hours and gets stuck in my bike chain (I have been trying to ride because I was told that "well, you won't be doing any damage to your back and exercise will help you.") and gets completely destroyed. When I realize that it makes no difference at all, I am just reminded how futile the whole thing is in the first place and THAT feels even worse than knowing that I have to go another 3 days without any recourse for the pain.
So, two months ago I was refilled short two patches and (at least here in Michigan but I understand it is supposed to be everywhere, a federal law) I had to forfeit the last two patches. You cannot come back and pick up the last two (or however many), you have to have your doc rewrite the Rx when you run out. My doc claimed he had never heard of this before the first time it happened and they made me wait another 3 days without any patches before bothering to call the pharmacy to find out I wasn't lying about it. Anyway, two months ago I was shorted two patches and I told them and they refilled it because they had finally figured out that this does happen when my pharmacy doesn't have enough patches to fill my Rx. All is well right? Well, no it was not. The chick at the doc's office didn't bother to write down when she refilled it and only noticed later. Instead of looking it up she just filled in that she refilled it 6 days early. So when I called for the next refill I was never called back. When I was already in the last 24 hours of my last patch and had dealt with several falling off that month, they tried to ignore my refill request and hoped I would go away because, in their records, I was 6 days early for this refill and they didn't want to have to actually tell me no.
When I called back again at 3:00pm on the last day of my last patch (from another phone number that they didn't recognize so they wouldn't know it was me and couldn't send me to the machine) she told me I was a week early (she didn't even account for the 31st day of the month, so thought I was 7 days instead of 6 days early) and could not have a refill for another 7 days. I took a few deep breaths and told her I had my last refill on the 23rd and not on the first. She told me, actually told me, "well, you didn't get them from us." I almost lost it but patiently explained that the month before, I was shorted two patches and had it refilled 6 days (not 7!) days early. She put me on hold for 20 minutes and came back and said "oh, I think I see what happened. I didn't write down the date the last time and defaulted it to a month (her months are 31 days instead of the 30 days they give you medication for apparently) later instead of 24 days later. Let me see if the doctor left me any prescriptions I can write this on for you." I was put on hold for another 10 minutes and when I got to the point where I was about to decide to drive out there and give them hell for messing with me (problem patient or no, I didn't care) she came back and said "wow, you are so lucky! He left me one page on a prescription pad. You can come and pick it up." After being on hold starting at 3:00pm after they didn't bother to even call me back, I was now in a position to drive out the hour to their office and hope they didn't leave earlier than when they were supposed to. I frantically emailed out to all my clients that "I am sorry but I will be unavailable the rest of the day because I had an unexpected problem." and drove out to their office as fast as I dared. I made it with about 5 minutes to spare and was just able to get it before they left. This just happened to all come about on a Friday and they almost made me go another 3 days past when I (in the really real world) was legitimately out of medication (I want to add that I have NEVER ONCE been early with these people either, for nine months, the entire time I was with them) which I only ever called when this was the case. I was so angry.
I think it was about the time she told me, "well, you didn't get it from us" that I decided I would never deal w/these people again. I made another appointment w/another doc after being told it would take them 2 to 3 weeks to get me a copy of my file because they didn't have time to get around to "extra work". I went to this new guy and sobbed away like a little girl who has skinned her knee most of the time. I was so pissed I did that. I told myself over and over again that I wouldn't.
I know I get off on tangents but my point, I guess, is that I have repeatedly told this guy what this was doing to me and all he ever did was agree over and over and then run away. And yes, that is what it was. He has a bad leg from childhood polio and broke his other knee shortly before I saw him the first time BUT this man ran faster than anyone I have ever seen who has TWO bad legs. He ran away from me every time because he was afraid I WOULD corner him and make him answer me. This, I might add, is something I would never do because of the amount of power he already had over me. I was so afraid to piss him off and have him ask me to leave. Ok, another tangent here, I am making myself angry and making myself hurt and shake more than I should, seeing that I have been told I could stroke out at any time due to the BP and pulse issues I have (I have been trying to not even think about these people).
Please understand that your question is not making me mad. It is the situation, the whole mess over the past year that I am finding it so hard to deal with. Bottom line is, he never cared that what he was making me go through was basically torture. He never cared enough to even give me a straight answer on why he was doing this to me. The best answer I ever got was from his wife (he always makes her answer to me, I guess) when she told me, "the doctor doesn't believe in narcotics, he will not prescribe you narcotics." I wanted to ask her what, exactly, they thought was in these patches they had decided to stick me with but I didn't. I just gave it up as a bad, hopeless job in the first place. If a doctor and a nurse couldn't figure out that FENTANYL is a NARCOTIC, I could never make them be any more intelligent. Ok, Ok, I need to stop now. I apologize for the rant. These people just make my blood boil.