Oh, wow… I just checked my email after getting back from the hospital which, unfortunately, was one of the most horrendous inpatient experiences to date, although I escaped additionally injury this time around-- and having a working Mediport was a lifesaver, literally.
I’m totally beyond words at all the incredible advice, love, and caring that you’ve all sent me. “Thanks” doesn’t even start to explain how grateful I feel that so many of you wrote back so quickly and with so many great suggestions.
Unfortunately, after my post, I ended up down to barely holding in a few sips of liquid a day and getting very sick again. The pain was really, really bad and I was back to vomiting once admitted all the fun stuff that comes with CP flares and, yes, they did continually tell me that my amylase and lipase looked okay and this included the G.I. doc comments! Ugh nobody gets this horrible disease! Initially, they just wanted to discharge me right away on clears because of my Mediport and the staph infections running around the area I convinced them that this would put me right back where I was prior to the admission! Duh!
Regarding the admission, after about 5 days inpatient, the pain is now better (or at least back to its usual crappy state, but I guess I’m used to that by now), but I’m back to mostly liquids and will try to slowly progress to get some nutrition and strength back, but even clears flares things a little for now (and Ive already lost 7 lbs., having just recently gotten back to my normal weight- now I have to try not to lose more). When I finally went to the ER the pain was totally beyond description, and I didn’t have anything else I can take/do at home, so Dave and I decided it was “time" to go and I don’t think I could have made it even one more day at home, no matter how much I didn’t want to be back inpatient. I knew I would have passed out and even with 300mcg Fentanyl every ½ hour in my port in the ER, it was like getting a placebo. This is also what started the troubles on the unit with the pain management nurse totally not getting CP or my genetic Ehlers-Danlos Syndrome-Classical Type, all complicating what they would normally expect or give for pain management. Without going into all the details and horrendous decisions they made let alone false accusations and assumptions, I ended up more upset than I think I’ve been since I was very young (a long, long time ago). I never received the care you would expect with an admission, mostly due to very poor or absent communication among the medical personnel and thankfully I was always aware enough to speak up and advocate for myself (it was so great having Dave there to back what I was saying and convey his observations as well!).
On a few of your great suggestions, unfortunately, I’d had problems with Methadone years ago and then was switched to the Fentanyl patch with Dilaudid prn, but then also became allergic to the Dilaudid. With allergies to codeines and derivatives, they wouldn’t consider trying the Methadone again. Maybe something new will be developed one day that lasts longer than the Fentanyl and I’ll be able to take it if needed. For now, it’s been Fentanyl, Fentanyl, and more short-lasting Fentanyl. I just wish it could be an occasional Tylenol and nothing else! I still hold out hope that that day will come and I won’t give up believing that there will be a resolution to living with this disease like a true cure and no further need for all the special eating issues and pain meds.
As for the difference between “addiction" and dependence or tolerance and I’ve worked professionally as a social worker in the addictions population, both outpatient and inpatient settings when you’ve been on a drug/med for a while and need more to get the same benefit, that’s the tolerance your body has built up. While dependence refers to need your body develops to a med/drug so you can’t just stop it without risking withdrawal symptoms, neither of these, in itself, is “addiction." Addiction refers to wanting and needing a med/drug something you don’t necessarily want to stop taking, but might get a buzz or high from (and in some cases, may not) or that you can’t do without due to how it makes your body feel. Many who have become addicted to a med/drug “need" it to manage through the day it’s not to treat a pain or condition anymore, but like the alcoholic who may start the day with a drink to feel “normal" and then continues seeking the substance, at times at great risk to themselves or others. I hope I’ve written this clearly enough and I know this topic comes up frequently. Personally, I love when I go all day without needing my pain meds I don’t even think of it at all when the pains a little better and would NEVER take a dose if it weren’t needed and even agonize over taking those I do need. That’s NOT '“addiction" although over time I have needed some dosage increases because my bodys gotten used to the lower dose and it’s failed to work as well and needed to be increased. I hate totally HATE, taking any meds, let alone anything narcotic, and will gladly give it all back as soon as/if this disease gets in control and it’s not something I need for pain control. I’m sorry if this sounds like an angry reaction, but it’s been a week of struggling with pain management nurses taking my patches off and not replacing them, then dropping the PCA quickly, but never putting me back on my oral prns before I left so I’ve now been suffering some withdrawal symptoms, which are so hard to go through and so uncomfortable, trying to get things back to where they should have been. There was no reason for this, but all due to misunderstandings, I’m now dealing with CP pain, mild transient withdrawal, and some side-effects from the anti-emetics since they often forgot the Benzo that would have prevented it. Ugh, again and sorry for the long-winded info on this.
I know we all go through this and it’s really unfair-- but I also feel we’ll find a way to “use” this experience in some good way. We have to help make some sense of all we’re going through or have been through. One day that might help answer the question of “why" this happened to us. We can be a powerful group (when we have the energy, or if we group our energy together).
For those of you doing better, Congrats from me, too Awesome to hear!!! Maybe this can also help others. For those of you still suffering, losing weight, hurting all the time PLEASE hang in there. YOU have the choice to decide what you do with it, even when it doesn’t seem like you’re empowered at all. Keep making positive choices and never, never give up. And always know that I’m thinking of all of you all of the time on my mind and in my heart and I only wish I could find some magical way to make it better for all of us.
(A note to Durga and others who rightly were on my case for trying to do more than I “should" have been and then still feeling badly as my CP became more emergent thanks for your comments, too and I thought you’d be happy to know that when I first posted on asking for help this time around and saying I was in trouble, I started out apologizing for not being more available for everyone but I read it over and took the apology out. I’m slowly learning how to balance taking care of myself and still being there for as many others as possible, but also being more human and realizing those limits and the reality of this disease on top of all the others I already was being challenged by daily. Thanks so much for the caring I know it takes to be that honest and direct I’m learning and growing from all of it, and it’s a good change, as hard as it feels at times. Warren and others… Thanks SO much for the info on the Pyxis system and what I’ve been told again even recently. Everyone’s contributions have been SO helpful and reassuring. I just wish I could try some of the options mentioned. For now, I’ll be seeing the CP specialist again, setting up the Celiac block via EUS at Georgetown Univ. Hospital, getting the kidney/bladder infection under control, and hopefully going back to the acupuncturist. Got most of this set up in the next few weeks, and for now am doing what I can to re-engage with life and the parts that do work. Thanks again, all!)
I want to thank you all again You all make this tolerable and help me and each other to not feel so alone. It’s a scary disease to have, and there’s such a lack of understanding and information. At least we have each other, and WE get it!
I’m sending back smiles, hugs, hope for less pain, and friendship filled with love and belief and patience. Thanks again for being there in such a special way it’s meant the world to me.
Lisa