Hi, everyone–
First, I want to wish all the best to Jill and the other two Lisa’s and Durga and EVERYONE else who’s been posting-- but I haven’t been well enough to acknowledge all you’re all going through, but I am thinking of you, everyone, every day-- and I’m worried about many of you and the posts I’ve been reading. I wish I could suggest something more than what’s been offered. You’re all wonderful and giving, and together we’ve become great resources for each other, and for the help you’ve all given me, I’m forever grateful.
I’ve been in pain that’s been so horrible, and nothing is helping. By Thursday night I was in the ER and they wanted me admitted for several days because my bowels were completely impacted, even with the large doses of everything I use regularly (not everyday to avoid my body getting too used to it). The bigger problem was the pain I was in with this on top of a kidney stone and the CP all in one-- and all that on top of handfuls of other painful conditions I’m “used” to living with. They gave me IV Fentanyl through my Mediport/central line, but it was like a placebo. They gave me this dose three times and said their Pixis system was going to lock out and not give me more-- even though they could see I was in pain and not seeming affected in any way from the med. Does anyone know anything about limits on what they can give if you’re as tolerant to the narcotics/opiates as many of us have become? I’m allergic to all other known narcotics other than Fentanyl, but I’m so scared by them telling me they can’t even legally give me what was needed for pain control, despite years of high PCA doses and ongoing home meds. Now I’m even scared to go to an ER for anything (and I even refused to go a few weeks ago when I went into anaphylaxis-- stupid, I know)-- I know that if I’m going to the ER, I’ll likely get admitted, but why would I even go if they “can’t” give me enough meds to even touch the pain. So, I went home and got aggressive with what I could try at home to stay outpatient, but once that got a little better, the CP pain (I’m assuming that’s all it is, but they can’t do contrast studies due to allergies and I and the docs have some concern that they’re missing something else other than the CP) just jumped back into the foreground like a rocket.
I’ve been in so much pain (and daily nausea-- which luckily the Zofran has worked pretty well for) that I can’t stand it-- literally, and I rarely get to that point. I get chills and sweats, start shaking and even ‘jerking’ or wriggling from the pain-- and can’t hold the tears and noises back. It goes on all day and on and off through the night assuming I can sleep on and off between prn doses (I’m so lucky to have a fantastic and loving boyfriend who’s been there through all of this and more). I ended up at home taking 16 times my normal dose of Dilaudid (that would be 32mg, and took it w/a bunch of antihistamine since I’m known allergic to it and wasn’t sure what could happen) on top of the Actiq and Fentanyl patches-- and used more of that than what’s prescribed, too. It’s gotten scary since I don’t like taking anything at all, and while without eating and by mostly resting it’s a little better (very little), I’m scared-- and I don’t get scared too easily. I’m used to bad pain, since I was a kid, due to a painful genetic condition-- but this pain is out of control and I can’t stand it. I somehow NEED it to stop or at least stay at a lower level.
I’ve got consult appts. with GI guys, but the soonest one is two weeks from now and I don’t know what to do between now and then-- and I’m sure he won’t be able to do much more than set up an EUS celiac block, which I’m definitely ready for at this point. The last one isn’t until early December-- which is like a lifetime away the way it’s going. And that’s with saying it’s “urgent” and getting on wait lists.
I don’t know what else to do or where else to go with the pain and it just can’t keep going on like this. I’m angry at it and frightened that I have no way to know if it’s more than the CP or not-- and so frustrated that it’s keeping me from any aspect of “life” that I’m trying so hard to get back. While at times I just wish so hard for even a few minutes of reasonable pain levels, it’s obviously not in my control, and with the docs and ERs basically saying they can’t help me, I really feel at a loss for what else to do or try. I know my medical history (it’s long) and allergy list (it’s almost as long) scares the medical folks, but I need some help-- and I can’t believe they allegedly can’t do anything for the pain anymore (and I don’t feel they’re doubting me in any way about my tolerance or my need for pain relief). It’s like everyone is just throwing up their hands and giving up since they don’t know what to do to help me any more. It sure leaves me feeling drained and unsure, and confused and upset at the medical community.
I guess that’s why I’m turning to you guys-- You all get it, as sad as that is to know. Since none of the medical folks seem to get the pain issue, and can’t understand what it’s like to have CP pain in a bad flare (I don’t think anyone who hasn’t had CP can really “get it”), and can’t seem to figure out how to help control it-- I’m asking for help (something I don’t do often enough or well enough, to be honest with myself). I’m hoping you guys might have some suggestions-- because I’m staying as positive as possible and still try to make the most of every day and every moment, but it sure gets hard when the pain is relentless and my body and mind are feeling like I can’t take much more some days.
I know this got longer than I had hoped, but I would sure appreciate any suggestions or help-- here in the hope it would help someone else too, or privately. And in saying this, I also want you all to know how much I hope each one of you will get a break from the pain and this horrible illness-- whether it’s yours of that of a loved one. Nobody deserves this, even for a day.
Love and hugs and gratitude,
Lisa
