I’m not sure what’s going on but the pain, which has been constant for over two years, is now totally out of control again. It’ staying way too high for too long and sometimes I feel like my brain just can’t take any more. It’s keeping me awake too much of the night and during the day is stopping me from everything. I can’t even eat a bite of something or a sip of liquid without it getting even worse, even when I don’t think it could get much worse. I’ve had days where I’ve used more than twice my “allowed” dose of pain meds (the pain doc is okay with it since the monthly amount usually seems to level out)-- and it never goes down to even a tolerable level anymore, really. I keep a smile on to “protect” everyone I know from it, but I know that ultimately that’s not fair to either them or me. The reality is that there are tears behind the smiles and it’s getting very hard to handle since I can’t even get it back below about a 5-6 even in the “good” moments. At least there are some genuine laughs and smiles still there, too. But add in the daily nausea and being back to barfing sometimes and it’s a really fun (NOT) flare of pancreatitis!
I know I likely have a biliary/pancreatic duct blocked again, and am hoping when I go to Mayo in about 10 days that they’ll be able to dilate the duct through the EUS they’ll do the first day. I just don’t want another ERCP! Every time it’s led to horrible flares, even to where my Amylase/Lipase levels actually still skyrocket (where most of the time, even in a flare, like most if us, they’re normal). I can’t handle getting that sick again. I also don’t think I can handle being back on TPN again (I still have my Mediport)-- especially after going into septic shock and hearing the “you could have died” thing again (also about 5 times that prior year at Hopkins before each ERCP). It got too scary and I can’t imagine risking it again (and I have medical training and really good technique, but the infections are always a risk, I guess).
I don’t say this much at all, but I’m really, really getting very scared of the pain level. I’m trying so hard to manage it at home until I go to Mayo-- and can’t imagine right now even making it through the plane flight. I wish I weren’t allergic to so many med classes so I could get better control-- I’d try anything at this point, but no doc has anything else to try and I feel like they’ve given up.
I know we all do, but I hate this disease more than anything I’ve ever had to face-- and I just needed to say that, maybe for all of us. We’re the only ones who can every ‘really’ know what we’re going through and how bad it can get. It’s just not something you can accurately describe to someone who hasn’t experienced this horrible disease, although they may tried hard to “get it.”
Thanks for “listening.” I just wish there were a way to get the pain back under control, even a little, or even for a short period of time to have a break.
Thanks to everyone who’s been writing and hugging-- I know many of us are going through this together. That’s what makes it more tolerable at times and I hope you all can enjoy the Holidays and New Year!
Hugs to everyone,