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It's not AA, NA, or anything of the sort, but WELCOME to OUR Pain Management Exchange
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BrenBren30813 posted:
I want to start an open discussion to invite all of the newcomers to post their stories, horrible experiences with doc's (or pharmacies), trials with families, etc. If you are new, sit down and type your story. I know there are at least 10 people that will read and hopefully respond. The Pain Management Exchange is not just an "exchange" but also a support group. We are all in this together, we share stories, and we get a little particular when it comes to medical care, so WHAT!?! It is our forum to vent, seek/get advice, experience a sense of belonging, and forget about those "healthy" people we come across each day. It's our place to be who we REALLY ARE 24/7 and not feel ashamed. So, if you are new to this forum, then welcome! and please share your story. We are here to offer support! and if you feel you "want your money back" please explain why (in detail) and I can guarantee that you will opt out of that choice in the near future, as someone (SOME 1 at the very least) will come forth and offer you hope, understanding, a shoulder to cry on, etc. It's all about being here for each other. Thanx for reading!
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annette030 responded:
Hi, BrenBren

How about everyone who writes about a horrible experience balance that out if possible with a positive experience? I have only had one doctor in an ER treat me disrespectfully due to my pain issues, and one doctor (who was my pcp) with whom I could not come to an agreement about my FMS treatment. I found a new doctor, case closed.

I have been blessed with far more positive experiences than negative ones with doctors, pharmacies, and family/friends.

I have had NO trials with families due to my health issues at all. My husband, family, and friends have all been wonderfully understanding. Chronic illness does not mean one will not have happy relationships in their life.

Please do not let this exchange turn into a "poor me" contest.

Just my opinion.

Take care, Annette
 
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BrenBren30813 replied to annette030's response:
Hey there Annette, I think that is a great idea. I regret describing all of the inquiries as an embodiment of negativity...it's just because of my own background "stuff", I guess. I was trying to steer away from a recent conversation started by a newcomer who felt that they weren't "handled" properly by member's attempts to offer support.

In any matter, it's a great idea for those who wish to share. It's unfortunate though, that many come here in response to a negative experience that they have had out there. I TRULY hope that the positive experiences will outweigh the negative, so all invitations still apply. I just jumped to the conclusion (based on recent posts) that we would be responding to negative experiences. On the other hand, I am sincerely glad to hear that your experience has been positive thus far. (OK, so that dag-gone pessimism is stuck in my r.e.a.r...but I'll work through that).. because your experience is very refreshing! Thanks for your input, B
 
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BrenBren30813 replied to annette030's response:
I should have mentioned to, Annette, that the "poor me" contest is not what I had intended. I just wanted those newcomers to feel as if they could vent without any consequences that would hinder healing.

So all-in-all that is a great idea. I am not certain that anyone will take, but if someone offered a negative experience (if they shall feel compelled), then turn around and offer a positive one, then that would be more productive, right???

OR if one member offered a negative experience, then the next offered a positive experience that they had under similar circumstances (or as a result of a strikingly similar situation), then we could take away a lot more than from those who have fallen victim to the negativity.

I hope someone at least will jump in. I am all for the positive! and I believe that someone else out there can offer ideas and promote that positivity globally, peace, man, (sorry, had to-but that is what I'm about) -B
 
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fuzzer29 responded:
OK, I'll bite. I use the Fentanyl pain patch to keep my pain mostly in check, but am horribly and stupendously forgetful and pathetically forget to change the patches on time routinely. Off to the ER to get emergency meds (the patches take 12 hrs to leave and enter my system). I do this so often (every few months) I think the staff at the local hospital know me by sight! They usually treat me very well and bend over backwards to treat my pain. I really like it there. Is it me or does that sound stupid?? That is my story for when I run out of meds or have a pain emergency.
 
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gailb54 replied to fuzzer29's response:
Hey fuzzer29,

It sounds like you need to get a calendar and make yourself check the days (some way) that you put a new patch on. If I relied on my memory, it would be a disaster! I have those plastic day-of-the-week pill containers and sit down about every 6 days and carefully refill the pills I will need each day into it. Then, on Monday, like today, there are the exact pills I need for that day. I eliminates any accidental over or under taking of the meds.

But for your patch, you could easily come up with a similar way to keep track. Wherever you keep the patces, maybe just keep a pen and piece of paper and write down (Monday AM) so that you'll know for sure when you look at it when the last dose was, and then keep it somewhere you will have to see it easily or make yourself notes. I just smiled when I wrote that because I'm so forgetful about other things that I make myself notes, but I constantly lose them, so that's not really great. Do you have anyone who could remind you?

Well, you must be a nice guy or something :) because I can imagine many ER's would not want a repeat "offender" but I'm glad to hear that they take good care of you. You really like it there? Really? I think we should all move near wherever you live!

gail
 
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BrenBren30813 replied to fuzzer29's response:
Hey there, Fuzzer, glad to see your 'bite'. I too wear the patch, but my body usually knows when to change it. The 12hr mark you mention also applies to me = bummer.
In the past I have written the day and time to change it - ON the patch itself with a Sharpie marker - works great and is practically waterproof.

I'm sooo glad to hear that you have a positive experience at the ER each time, and you feel like you can go back. I think many of us get scared away, but I'm lucky that I haven't had to go relative to my chronic pain issues. I have felt like it many times, but I end up toughing it out some way or another..but then again, It probably isn't as bad as what many here go through. Have a great day, B
 
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gailb54 responded:
Hi BrenBren,

Well, after 3 1/2 years of pain I've changed my way of communicating with my family. For the first year, I didn't want to say too much about how desperately I really needed them as I felt like I should take care of myself. Except I couldn't completely. I was fortunate enough to have a young lady that I hired to occasionally clean for me and she was great to also go to the store or pick up RX's for me. The problem with that was that I couldn't afford to get her to do too many things.

With time the pain increased despite, as you guys understand, going through all kinds of hoops trying to get well or better. Eventually I had to ask for help. I actually had a family meeting (small family) and told them that I just couldn't do it all and asked for any ideas or help. They say that you should ask for help when you need it, so I did when things got really bad. But help never really came.

I tried communicating openly and kindly with the only 2 relatives that I knew would ever possily be inclined to help me in any way, but maybe I didn't sound as desperate as I really was, I don't know. The number of nights that I cried wishing for a couple of hours sometime for some help (or even a visit)was almost as many nights as I cried due to the pain being out of control. Recently that all changed.

I just couldn't take it anymore being so alone, in such severe pain, and I honestly felt like I didn't want to live anymore. Really I just needed some encouragement or pain relief, as I do very much sill want to enjoy life if possible. So, I sent out an email to my family (and a close friend) telling them that I felt like my time on earth was basically going to end very soon unless I could get help medically and support mentally. A dear friend of mine died 3 years ago from suicide and I didn't want my family to not have that final last cry for help if they really cared. That sounds awful, but it was not a threat, but just how desperate I truly was with multiple medical issues, feeling very weak and depressed, in terrible pain, and not having enough money to even get the MRI and x-rays I needed.

Now they are helping me and things are very different and I'm so grateful. My brother came to get me and took me to his home with his family. My sister-in-law has been taking me to doctor appts. and they paid for an MRI and x-ray I needed until I met my deductible on my insurance. She has been very kind to me. My daughter and her husband are keeping my dog for me (I miss her!). It isn't perfect, as life isn't, but it is helpful for sure and I'm so glad that they have been willing to give me this help.

Tomorrow I see a surgeon. I want to go home so I can be with my dog and also I've started painting which I enjoy and miss. But, I hope to first get some answers about getting better or coping better. I'm in Houston, so there are plenty of doctors, but as we all know they can only do so much. I just couldn't do it alone any longer. I'm sure some will think it was wrong for me to send the email that I sent, but I had tried all other kinds of communication to no avail. Now I'm getting to know my nieces who I barely even knew and I'm so thankful I wrote it.

I hope you all have the support you need.
gail
 
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greg8846 replied to annette030's response:
Thank You

Greg
 
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BrenBren30813 replied to gailb54's response:
Hey there Gail, you have been through sooo much and as I have told you before, I am proud of you for sticking your neck out and declaring help. It's not an easy thing to do, but it is healthy. When pain overrides everything, we tend to focus on "the end" and how much we want to escape. You did something so BIG that took so much courage, and I applaud you for that. I am hoping that others reading will feel worthy, as they should, and seek out any help that is needed. It's so sad to see so many people here suffering, however, it is comforting to know that they are seeking some kind of outlet that is healthy. We are all in a similar boat and can learn from one another on how to deal. So thanks for sharing, B
 
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annette030 replied to BrenBren30813's response:
Hi, BrenBren

I did not think you meant it to come out negative. That was just how I read it, and I just wanted others who might read it that way to try and think about positive things too.

Hugs, Annette
 
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annette030 replied to fuzzer29's response:
You might also try using a cell phone reminder, or send yourself emails, etc. I would use a calendar like already stated, but my husband and son are both technically ahead of me.

Isn't it great that the ER where you live treats you so well and are so welcoming!

Take care, Annette
 
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annette030 replied to gailb54's response:
Hi, Gail

You and I have known each other here for many years now. I am always inspired by you. You have altered your way of doing things time and again in response to your situation. You have up days and down days as we all do and are free with encouragement to everyone no matter how you are feeling.

I am blessed with knowing you and would miss you if you left.

Hugs, Annette
 
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gailb54 replied to annette030's response:
Annette,

Thanks so much for your note. The last few months I've only been able to read here every couple of days due to something we are still trying to figure out that has caused weakness and fatigue. I see 2 doctors tomorrow and am so discouraged right now. It means a lot to me for you to be so kind. In fact, it made me cry to read this. I feel like I've become so negative through this and it makes me mad at myself.

Annette, you have encouraged me now for years, like you say, and I can't thank you enough. I hope you're feeling OK. Thanks for your knowledge that you serve others here with daily and for the heart that is not as often shown, but is the reason you are so dedicated to those who come here for help.

Hugs,
gail
 
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transcriber52 replied to gailb54's response:
gailb54 So many of us feel what you wrote about feeling depressed and hopeless with your pain and no help. Talking to our families sometimes does no good, nothing changes. I am so glad you have found some relief with your family helping you now. It is not an easy thing to live day to day with the pain and to be alone doing it. Many times our family says they understand but until they really walk with our shoes they don't see what is real to us. I pray your family remains being so helpful to you thru your hard times. Please let us know how it goes with your Drs tomorrow and how you are doing. It is very hard to have to go to the dr when you feel this discouraged. I do hope they can do something for your weakness and fatigue. It isn't fun trying to live life like that. What kind of things do you enjoy painting? Do you do oil or watercolor? I enjoy watercolor. Never have tried oil. I hope you have a more beautiful day tomorrow and your dr apts turn out better than you are expecting right now. My prayers are with you.
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