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Do any of you "old timers" feel "squeezed out" lately?

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Posted 2/7/2011 3:37 PM (GMT -6)
Thanks for asking StrayDog,

I do have to have additional surgery to fix the botched one. My new eurodynamics test is tomorrow and I'll go from there to see how bad and when the new surgery will be. You are correct about it being scary in the hospital now. Man, they really screwed up my meds!!! I had everything printed out, who wrote it, when I take it, my allergies, my suplements and everything and then wham....they tried to change my meds, then refused to give them to me, then took one of my bottles to put their lable on, then kept changing their minds as to when I could have what. I kind of went off on one nurse who kept screwing up the orders. She wouldn't let me have my ultracet or my xanax xr. She kept saying...can't you hold off until ????. Man was I mad and in pain!! As I'm sure all of us know, you can't just decide not to give people CP meds they have been on for years!! I did without my ambien the whole time, without my xanax xr (for at least 7 hours late), without my Ultracet (except one pill today ) I usually take 4 a day, without my oxy until today (usually 4 a day) and without my normal dilaudid dose. The started giving me dilaudid in the ER, but kind of decided I took too many meds when I got to the floor. The Dr had even signed off on what I should take but that wasn't good enough. I can say that the night nurse was wonderful, but the day nurse needed some help. She was nice enough, but kept telling me she exactly how I felt (when my back was killing me from staying in the same position for so many hours) because her husband had had so many back surgeries....but he decided he didn't need pain meds and just drank a beer now and again). Somehow that didn't make me feel too secure in her pain understanding. I ever so gently explained that I don't drink at all and that I am on the meds I am, at the times I am supposed to take them, because I see pain management and am under contract with them. I even had that listed at the very top of my med sheet. She still didn't get it, but I guess she was trying. I'm just glad to be out!!!

I have a follow-up with the cardiac Dr and the endo in a couple of weeks and I will certainly be keeping those apts too. I just hope everything works out well with this other surgery and I can stop having to go to new Dr's every time you turn around. I feel like I just paid the hospital off from last year and now this will cost me about 3000.00 out of pocket. There is nothing like being broke, in pain and at the mercy of others. Of course, this too shall pass.
Posted 2/7/2011 3:47 PM (GMT -6)
Oh Sandi I didn't see your post before I responded. Thank you so much! I appreciate you expressing your opinion on the thread topic and I appreciate your kind words now. I'm sorry that you ended up with all of those test for nothing!! If only we could know the best thing to do when things like that happen.

I completely understand the Facebook thing. I tried it once or twice, but found I didn't like getting tons of emails and friend requests from people I don't even remember. I live in a small town and it's not hard to find me, so I kind of feel like anybody who really wanted to say hello could pick up the phone and do so on a more personal level. I also don't like the drama that everyone I know has when they get caught up in the "did you see what ______ had on in his/her picture" or "did you read what _______ said about ______". I actually refuse to allow access to that sight in my house because I don't want the problems that come with it. My daughter is too precious to me to allow her to get caught up in someone's joke or worse yet by a predator. She's only 11 and I know how easy it is to get caught up in things at that age. Even some of my best friends get caught up in the drama of it all and I have all the drama I can handle in real life. HW is actually the only site I have ever posted on and that was after several months of lurking. It was the people here who made me want to join and that's why I felt compelled to ask the question I did in this thread. It just seemed to have lost the quality that brought me here. I guess I need to do my part if I want to see the communication come back, so I'm going to give it a good try :)

Thanks!
Posted 2/7/2011 4:32 PM (GMT -6)
Confession time: I only post on occasion b/c I feel out of place a lot of the time; I am the dark horse, the existentialist, think life sucks for the most part, like reading dark poetry, etc. you get the point. So, I really feel out of place in a lot of situations.
Posted 2/7/2011 5:47 PM (GMT -6)
Big Lucy,

I love your posts.  I like having your insight and your experience and this is exactly what I was talking about.  You matter and should never feel that you don't belong.  This is what I miss!!  I miss the contributions of everyone.  I honestly feel that we all have something to share and something we need or we wouldn't be here lurking.  Please join back in and let us enjoy your company!!

Posted 2/7/2011 9:52 PM (GMT -6)
Hi, Joan M!

Great to hear from you! Yes, I will still be posting on the OA forum. I have a LOT of experience with OA. LOL I know more about OA than I know about anything OA and Fibromyalgia than I know about anything else. The only thing I know about chronic pain is that I am relatively new to this life experience and I don't like it! I actually came to the chronic pain forum to learn how to cope with this new wrinkle in my life. The only thing I can do at this point is empathize and be supportive. I am the type of person who needs emotional support from time to time. I find chronic pain to be both physically and emotionally draining. One day, if/when I gain the knowledge that others are seeking, I may come back here and try to help. :)

BTW, I have been reading your poetry and I find it intelectually stimulating and sometimes just beautiful. I love to read poetry. I have a BA in English and Journalism...double major, so your writing is right up my alley. You are quite good at what you do, Joan. Sometimes when I need a short break from the stress of my work day, I visit your site and read a little. It gives me a mini vacation from the stress of my work day. You have a gift.

My cats are telling me they are hungry. Better run and feed them. See you on the OA site!

Peace,
V
Posted 2/7/2011 10:34 PM (GMT -6)
RM you know WhiteBeard had the very same thing happen to him while in the hospital this last time for surgery. His regular pain meds were withheld from him too. I don't know if many people know this or not but, when we are in the hospital even though a dr may write orders on what medications we are allowed, a nurse can use her own judgment as to whether or not we actually need that medication. I found this out when my dad had open heart surgery. You know what, I have a real problem with that. When my dr tells me to take my medication a certain way you can bet that is exactly what I am going to so, its called compliance. I have had my meds jacked with too when hospitalized because I take a lot of medication for many different medical problems. Because these nurses are allowed to use their own discretion many times it is the patient that suffers in the long run. Seeing that this is happening more frequently than it should, I am not sure what the solution is to this problem.

One thing I suggest we should all do is when we are put in the hospital and it is the usual bad experience as what you and WhiteBeard recently had to happen is once released from the hospital I think a letter to the hospital administrator should be sent. Also, if a problem like this happens while in the hospital call their information line and ask if they have a patient advocate. If there is one ask to be connected to this person and explain what the problem is. Their job is to assist patients when there is a problem in the hospital. I had a very positive experience with a patient advocate who came to my room to witness me fire a dr one time while in the hospital. She is the person that contacted the dr and told him to meet her in my room at a certain time too. The dr was written up another time I found out over this incident. The dr was in my face screaming and shaking his finger at me and I for once kept my big mouth shut and only spoke when I had to. The patient advocate hugged me after this was over with and told me how hard she knew it was for me not to explode but she said all of this would go in her report since she witnessed this and I was the one that remained calm while the dr was totally out of control. Also, most hospitals now have an online place to go and you can leave comments about your stay. Write a post on how poor the care was while in that hospital.

I really think if we bring it to someone's attention on the poor quality care, we may have a chance to get some of the issues resolved. But, if we say nothing, then nothing will get done. It certainly cannot hurt to be heard anyway.

The nurse was out of line telling you to wait longer and how her husband has a beer here and there instead of taking pain medication. I would certainly mention this in my letter too.

I hope this next surgery is done right and you get your problem all taken care of. Let us know when you are scheduled for surgery again. Take care.
Posted 2/8/2011 12:18 AM (GMT -6)
Stray,
I was told during one of my hospital stays that my med orders were prn- and I would only recieve them when I specifically asked for them. Sometimes, it depends on how the doctor actually writes the orders. If you are supposed to take dilaudid for example every 8 hours via iv during your stay, and then you have norco or something similar written for breakthrough or it is written as 1-2 tabs as needed for pain- this translates to the pain scale that the hospital or facility uses. For example- if the patient has just recieved their iv dose of dilaudid and two hours later asks for their breakthrough meds and the facilities pain scale or standard orders are 1 tab q 4 hours as needed for pain ( the nurses see this order as for pain from a 1-5 on the pain scale= 1 tablet, pain over 6-10 = 2 tabs). My husband, beside being a police officer also works as a nurse and his facility has the standing orders for oral meds this way. The prn written order is also usually interpreted the same way, so unless the doctor specifically writes 2 norco q 4 hours and the patient requests it, you will get the standard dose.
I know that it's confusing and often doesn't jive with how we normally take our meds at home and it's sad that it happens this way, but it does, more often than not.
Last time I was in the hospital, I brought my own pain meds and told my surgeon that I would take my own meds because I went two days without my pain medications despite my surgeon's written order for them. They had what they call hospitalists- doctors who only see you while you are in the hospital, and all the one that I had was worried about was my blood sugar.......
Your suggestion of contacting the patient advocate often will get the hospital and doctors all functioning on the same page but it's often hard to remember to contact them when you are suffering.
And writing a letter of complaint is also a great suggestion, since it will get the attention of the administration especially if you state that you will not return there as a patient due to the lack of quality of care. I've also said that I would contact my insurance company as well if things weren't resolved.
Sandi
Posted 2/8/2011 12:37 AM (GMT -6)
RM,
You are so welcome! I am truly glad to see you here......you add a lot to the forum and I was like you, I lurked for some time before finally registering and deciding to join. The whole facebook thing confuses me, and like you , I get a bunch of requests from people that I either haven't seen or spoken to in decades or from people who know someone who knows me and I've never met.
Given my husbands fields of profession ( law enforcement and nursing), I am doubly cautious about those public networking sites and I didn't allow the girls to have one until they were well past the middle school years and much of the drama had died down, although, even now, with the oldest in her 2nd semester of college, from time to time, she still gets caught up in the latest drama amongst her peers.
Facebook and sites like it seem like junior high , all over again. I don't know many people who want to know every little detail of someone's day, or their latest thought or feeling on an up to the minute basis but I guess for a large part of humanity it seems to fill some need.
Anyway, I am catching a really nasty cold that my husband brought home from his nursing job and has now given to me, so I am going to bed and hope that I don't feel any worse tomorrow.
I totally get what you were saying in your initial post on this thread and agree with all that you have said in regard to it. The people and the content that drew me in doesn't isn't here now and I am at a loss as to what to do about it.
Take care and get some rest RM,
Sandi
Posted 2/8/2011 1:53 AM (GMT -6)
RM,
I stopped by and saw this thread and wanted to just add a few thoughts, but I confess I haven't read all the posts on page 2, so I may have missed some things, especially about your hospitalization. I'm also glad you're home.

I want to thank you for starting this thread and commend you for your courage in doing so. While I haven't felt squeezed out, I have noticed a clear change in the forum over the past year, and that's why I don't even lurk very often and post rarely.

It seems to me there used to be room for all kinds of things - from the informative to the supportive to some silly stuff (I confess to being the instigator to some of the latter, even tho' my posts were mostly serious! LOL), but around a year ago (this is all my opinion, of course) I felt a distinct change in the tone of the forum. In one instance, I felt personally attacked, but it was done in a subtle way so that technically I couldn't complain. That hurt. And I'm pretty thick-skinned and know that all kinds of things can be said on forums.

But aside from that particular instance, the main thing that seemed to change was a need to keep everything "positive", so that any respectful disagreement or thoughtful discussions were discouraged. I tried for awhile to keep posting, but got tired of explaining myself, walking on eggshells, because a few members who were dominating the forum at the time (not any of the newer members, who I don't even know as I've not spent time here lately) tended to redirect many such discussions in a direction they felt was "positive". There is a real difference between flaming or being disrespectful to others' posts and having healthy disagreement. When that got stifled, the forum no longer met many of my needs.

RM you have posted something that's very important. Several others, especially mrsm123 (Sandi) also have posted thoughts that reflect mine.

I do miss what I used to be able to get from HW, but I do know things change. Perhaps the forum is ready for another transition and expansion, but I don't know if I have the energy or desire to try to make anything happen. I hope some of you do, though.

My best to all my old friends, and to newer members I've not met.

PaLady
Posted 2/8/2011 5:18 AM (GMT -6)
Hi PALady,

I have missed you and have been thinking of you and hoping that you are doing okay.

I understand what RM is saying.

I don't post as much because I have been kind of a mess. I have noticed that a lot of people who were here when I joined and who personally helped me a lot are now gone, and it definitely makes me sad. I guess that I wish that everyone that I knew would stay and post, but that's not the way life is:(


Hugs,

Flower
Posted 2/8/2011 6:18 AM (GMT -6)
RM,

I too at times feel that I have nothing constructive to add to the forum because it may be either construed as negative or depressing. There are many times that I do not post things I would like to simply because it may be a downer to other members. That is my choice. I did notice a darker, more beligerent tone on the forum for a bit, but it was quickly snuffed out, almost as though difference of opinion is not allowed. I know the saying, "If you can't say something nice, don't say anything at all." However, I feel that a healthy dose of opposite few points can expand horizons and at times help us see our way differently. It can open avenues that we may never have known existed, and also provide a much needed outlet of adult conversation to a group of people that can become very reclusive if given the chance..

That being said, I haven't read all the posts. I am glad to hear that you are home from the hospital and that it wasn't a heart attack. Also, being a newer member, you and all the other people here at HW that I know or don't know yet are valuable assets to a great resource. Thank you for beginning this thread, because now some of us whose needs were not being met as well may have the chance to now have those needs met.

Have a good day with low pain!

Mindy

Posted 2/8/2011 10:28 AM (GMT -6)
RM, Hope your doing okay, sorry you had to go to the hospital.
Things did change last year, I know a lot of people left cause of a arguement over
spelling and I'm not sure when that happened but a lot of people left after that.
and I sure do miss a lot of people posting
When PALady left, I noticed and missed her terribly, I wanted to wish her well on her surgery
and to see if that even happened for her, fingers crossed in hopes she had her surgery.
This year has been hard on me and last week with the power outages, I just wanted to
keep my computer safe so we kept it off from Wednesday til Sunday, another freeze might
hit us this week and I might have to be away.
But also when new members do come here and post questions about injections, I really wish they'd
read older postings on those first, there are so many older postings on injections, that I think new
postings on injections go un-noticed as most of us have had them and know they don't help much.
Maybe Dani or Chutz could do a daily question on have you had injections, epis, nerve blocks or
both and did they help you and or maybe do an open debate on them and keep it permanatly posted
at top for all to read, also if they had them done while awake or alseep under mild sedation...
anyways, I got off topic sorry, yes things have changed. I remember when TinMan was here...
RM Hope you going to be okay, healing hugz
(((((((((((((((((((((((((((((((((((((((((RetiredMom))))))))))))))))))))))))))))))))))))))))))
Posted 2/8/2011 11:08 AM (GMT -6)
I come on here almost every day to see how others are coping, what is working for them etc. I rarely post though, because not that many people ever respond to my posts. I know that I am in sort of a predicament with my pain. Darned if I do and darned if I don't. However, I do not get disappointed over the lack of comments nor do I take it personal. In the past, I could always rely on Char or PALady to comment and for that I am extremely grateful.

The "tone" has changed, but every forum will have that. I have seen many ebb and flows on the forums over the past 6 years. I don't like titles either (newbie, Veteran, Elite) but we have to remember without the newbies, we would never of gotten the Vets and Elite. We were all newbies at one time. So we are all just as equal and we shouldn't be judged on our post count.

I tend to steer clear of the "huggy" posts....I don't know why...maybe cause it makes me a bit uncomfortable, sort of like stepping into the middle of a conversation and not knowing what is going on.

I also think that some aggression and anger is always going to happen at some point....heck how can you not have it especially when we are dealing with people in pain 24/7??? I don't know about you guys but I get cranky when I hurt! :)
Posted 2/8/2011 12:41 PM (GMT -6)
I honestly am not trying to stir up anything.... I promise!  But if we are having this conversation - I feel this question is relevant.  I don't get the "huggy" posts comment.  Maybe it's just my sleep-deprived brain.... but I don't get what is being referred to. 

I love everyone here.... and, though I know some of you better than others, I feel everyone's input is invaluable.  I don't want anyone to leave or feel that they can't post.  I think these "growing pains" are just a normal part of forums on the web. 

Again, I'm not trying to be argumentative, I swear!  But a better description of what this term means would be appreciated....

RM, I gotta run.... babies crying.... but I'm sorry to hear about your recent health struggles and your hospital stay :(  

--Tina

Posted 2/8/2011 2:26 PM (GMT -6)
    Dear Retiredmom , Sorry I'm late to answering this question you asked about the old timers , because I think its a really good question thats important . As Dani said theres an ebb and flow to the chronic pain forum and I guess any Forum . I too used to come here at all hours and made great friendships with people all over the country and Canada too . But new folks inevitably hear of how great it is hear and want to be a part of this , just like us in the beginning . I had hip surgery and now I no longer have chronic pain like before , I still post because I love the people here but not as much as I used to . I know at least 2 or 3 others whose health situation has improved or went back to work and have kind of faded away from here , I guess thats life , nothing lasts forever for the most part and everything changes . But I've always valued your posts and your opinions , I hope you continue as long as you feel you need too , thats what I;m doing . Thanks for the good question and for being part of a great family that I truly value very much . Mikel 
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