Post Edited (ryand) : 7/11/2008 7:35:38 PM (GMT-6)
I'm SO sorry to hear what you are going through! No doctor should be treating you like that!! I would definitely try looking for another more compassionate doc, like PALady said! That just doesn't sound like they are taking your pain seriously!! And that response that the pump is for life threatened patients is bogus, because the pain has to be managed somehow and if the orals aren't working, there has to be other options to go! So, I would try and see about a new doc!
I myself have found that some friends left, they just don't understand what you are going through! But when you think about it, do you really want to surround yourself with that negativity? They obviously weren't good friends to begin with, or they'd understand! I have only a couple friends, and they understand that I can't come see them, or go out with them, etc. Your true friends understand, and if you're left with no one, or even one, that's ok too, you have to take care of yourself right now anyway! And besides, you have plenty of friends with this family of pain sufferers, we all understand!
Also, I would take the advice from PALady and Sandi, they have given very good advice, as always!!
I would also talk to your PM about trying different medications, because that happened to me, I was having trouble with each one that I was given, they just weren't helping!! The Vicoden was making me SO moody, the Topamax would interfere with birth control, as most meds do, and so on! I was on Methadone, which helped me the best, but then was switched off because of the problems they were finding with the heart with patients on that medication! So I've been on the MS Contin and that really doesn't help much, but I don't want to keep switching meds!! And if you are having such bad spasms, I would talk to your doc about muscle relaxers on a schedule, over time they help better, but it sounds like your muscles need some calming down too, that's what sounds to me to be one of your biggest issues! Try to do relaxing techniques for you muscles too, the meditation should at least help you too! But one thing too that will REALLY help, is to think POSITIVE, I know, it's easier said than done, but since I've been doing that, it's helped me gain a good outlook on life, you have life, though painful, you still have it, and there are things that you can do to help yourself feel better! When you think positive, life seems to get more fun! Though it's hard to bypass pain, it helps when you can think positively, it's very hard to explain, but you can do it!! You can help yourself get emotionally better, and that helps a LOT!
I wish that I could say something that will make your pain go away, but I don't know any magical words, sorry!! Just know that everyone here has your back, and we are here to help you just the same! Please don't be so hard on yourself, it's not you that is the problem, it's the healthcare and compassion that is lacking! Keep your head high!
Good luck to all and I hope that we all find some sort of relief!!
I totally agree with PALady, listen to her, she has wonderful advice! And PALady, I hope that you are feeling better, I know that is the worst, being sick and in pain! ARGH!! Get better soon!! But the whole part that this person really shouldn't be teaching other doc's her method, I totally agree with, totally!! That really is unfair to do that to a person, being in pain is very debilitating and needs to be treated!!
I'm sorry that socially things have deteriorated, and I totally understand what you mean, because I've done the same thing, put on the smiley face and deal! I'm the same way, a private person, and I tried SO hard to maintain my life, but you have to take care of your health, and enough people told me that before I did it!! But, hey, if their your friends, they will be there, so don't worry about that right now, your health is most important, and if you need to talk, we are here, and you can definitely email me as well, I'm your friend, LOL!
My motto always was, "Smile, they wonder what you're up to!!", so that probably has gotten me in trouble as well, LOL! Don't worry, don't get depressed, I know it's hard, but things will get better!! Once you start to get comfortable with what's going on with your doc and getting the proper regiment of pain meds, you will start to get more comfortable with your "new" lifestyle. I still feel like my life is up in the air, that I'm living someone else's life at times, but hey, whatever gets you through, right?! We have all been through similar things, socially, mentally, and physically, though each person's story is different, we all are in pain and need the support, it's ok!!
So, good luck to you and keep up posted!! Good luck to all and I hope we all find some sort of relief!!
PALady, feel better soon!
I completely agree PALady!! We do have to grieve our losses and within time will cope with it, but it's hard, I will say that! Eventually we come to terms with it, but we never have to like it!! Right?! LOL! Positivity goes a long way, and I wish it went further, but hey, every little bit counts!
I'm sorry that you are bloated, I hate that feeling! I get that from my meds and the constipation that goes along with it, I have IBD on top of it too, so I can understand that yucky feeling, I hope it goes away soon, I really do! Not fun to be sick and in pain!
You know, that is one thing that I truly learned from all of this, and that is patience and listening! At least with me, I have become more compassionate than I EVER was! So, there is good that comes out of it too, though it's very hard to see through all the brain fog of pain and suffering!! LOL! But, we just have to look for the good in things, it keeps us going!
Thank you for your support, kindness, and your ears! You all help SO much! I wish everyone luck and some sort of relief!
PALady, you are hilarious!! But, I'm very sorry you're in SO much discomfort! Just a suggestion, have you tried probiotics? In case you haven't heard of them, they pills with good bacteria that help the intestinal tract health! Look into it, there are SO many out there, but there was one that I've been taking and it has 16 billion cells per capsule, and the way they process it makes it resistant to the acids of the stomach and small intestine and go to the larger intestines where it does the most help, is what I understand from them. Some are processed and have cracks in their cell walls, so they aren't resistant to the acids, so this one warns about that with other probiotic products. So, if you are interested, please ask, I would be glad to answer questions, at least from what I know! You can also PM me!
But, this can help with constipation, IBD, Chrone's, etc. Strictly for intestinal health, and also helps to get rid of toxin build up in the colon and help to relieve other symptoms (supposedly, but I've only been on them a little while, but it's helped my constipation and IBD a good bit!).
Anyone can PM me if they are interested, this is not a sale's pitch whatsoever, I just was hoping that someone might get some help from it!? Just a mention, that's all!!
Good luck to you all, I hope that you find some sort of relief!!
PALady, feel better, I have you in my thoughts and prayers, as with us all!
I agree totally with PALady!! I had the same situation in the begining of my CP problems, and my PCP was very good and helped a lot! And hey, what's the worst that they can say, "NO"? So, I wouldn't hesitate to ask, it can't hurt, and maybe you'll be able to do what PALady was mentioning, seeing the PM on occasion, see if there's anything that they can do to help you, and regularly see your PCP?! I think that's a GREAT idea, and it might be easier on you!
I was lucky, I'm in the middle of the city and I have a lot of great doc's all around me, so I'm sorry I can't help with the overnighters! But try what PALady said, maybe you won't have to worry about traveling!!
PALady, WOW, you travel 3 hours for your doc! I'm sorry to hear that! Is that hard on you to travel that far? I'm asking this because my parents live far, how do you handle long trips? Is there something that you do to help yourself for the ride? Thanks!
Ry, I really wish you the best of luck, I hope this helps!!
Good luck to you, and all!!
Post Edited (PAlady) : 7/15/2008 12:14:02 PM (GMT-6)
PALady, you had me laughing with those prunes!! LOL! I forgot about those! I have eaten them and they do work GREAT, I just don't like them too much and I was trying to eat them daily, but I would forget, probably because I'm not thrilled by their taste! LOL!
So Ry, there's an idea for you! Maybe if you could find a friend or relative close to a specific place, maybe you can do an overnighter with them? That was a good suggestion, PALady!
It's very important to like your doctors (or nurses!), because believe it or not, that plays a big part in recovery and healing! Compassionate people are very much needed in medicine! I'm glad that you like where you're going PALady! That's very important, and I hope that you, Ry, find a good doc!
Good luck to you all!
Post Edited (PAlady) : 7/16/2008 12:34:21 PM (GMT-6)
PALady, I'm SO sorry to hear about all that! From what it sounds like, and from what I know of you from posting, you don't sound like a dishonest person! I'm SO sorry! I hate that docs label people like that, when they just don't understand, OR LISTEN!!
And PALady, I'm sorry, I didn't mean to offend you by laughing at your story! It was funny the way you wrote it, but I'm SURE it wasn't funny to go through!!
And, I don't think you hijacked, it's all in the same topic, pretty much, and I hope that Ry finds this to be helpful too! I'm sorry PALady, I got the impression you loved where you were going, but it sounds to me that you find it to be a little bit of a hassel? I'm SO sorry, I wish I could help somehow!! I think it's SO difficult to find a good doc, it's as bad as them trying this med or that, you have to try this doc or that, and it can get VERY frustrating, I know that one! I had to find a PCP back when I was in HS, and that was very hard, because I have SO many medical problems!! I have more than I let on, but I deal, the back is what's making life hard! So, for me, finding someone that monitors all my medications (which I take maybe about between 13-15 meds), that doesn't just pass me off to the specialist (which my previous doc did, EVERYTIME I came in with something), and someone with compassion, SO hard! I actually started to ask my family which docs they go to and why they like them, because I had HAD IT!! LOL! I wish that we all could have the best docs, that actually give pain relief!!
And Ry, give us updates too, we want to know how you are! I hope that things are working out for you!! I wish you and everyone relief!