@tpc_yaya
Active 3 weeks agoForum Replies Created
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Posts
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Hi Bryan,
It is nice to meet you, I do wish it was under different circumstances.
Finding our limits can be hard because we are still the same person we were before but now there are those limits and all the feelings that go along with the limits. It is frustrating and maddening and emotional and so much more all wrapped up inside us.I try to remember on those tough days when the roller-coaster has me twirling in every way possible and my strength seems to be gone, that it is okay to not be okay.
We have our hard days, we have our impossible days and I keep telling myself as long as I keep moving forward when that pain monster lets me breath again, then I win, not the pain.I have lived with pain for 30 years, it started in my early 20’s and I am much older now. I want to say that there comes a time that I found peace with what my life had become however I would not be totally honest with you or myself.
I don’t think I ever found peace, what I can share from my own experience is that once I found my way through the stages of grief over the loss of what once was, it became a little easier to begin to find my journey forward.
That new journey showed me that I was still me, even though I could not do all the things I once did. The acceptance and hope allowed me to be open to finding ways for me to contribute and feel useful and needed and accomplished.
A big thing that has helped me over the years was having support from others who live with pain.
I want to let you know that we have a support group that meets on a conference call every Tuesday. You can read more about the calls here; https://paincommunity.org/tpc-outreach-support-conference-calls-2023/The calls are every Tuesday at 7pm ET, 6pm CT, 5pm MT and 4pm PT. The call in number is: 267-807-9601 Passcode: 491-268-096 and press the # key.
I hope that this finds you getting over the pain flare that you were experiencing earlier in the week.
My best to you,
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi JosephR56,
I am sorry you are not getting pain relief. I am not a medical professional so I am unable to name or recommend any medications. You could speak to your provider about the difference between short-acting and long-acting medications.
Long-acting medications are made to release the medications over a longer period of time and many pain patients find that they cover the pain better.
I would like to also let you know about our phone support call.
It is every Tuesday at 7:00 pm ET
Call in number: 267-807-9601 Passcode: 491-268-096 and press the # key.The TPC Outreach Support Conference calls are FREE, but please check your long distance calling plan to see if any standard long distance rates apply.
I do hope you are able to work with your provider to find the right pain treatments.
My best to you,
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi Kerian,
It is nice to meet you, I do wish it was under different circumstances. It is a hard journey with pain. Trying to remain social is difficult even on our best days. You are so right about how your husband can only offer so much support. It is hard on our spouses/partners too. They may not feel the pain we do but they live with it, just like we do.
I would personally like to invite you to try out, The Pain Community Support calls, every Tuesday at 7pm ET.
It is a great place to get the support, acceptance and peace you are looking for. You will never feel judged or that you don’t belong. We are a small group with a lot of compassion and empathy and support. I will include the link to the part of our website where you can read more about the calls and will also include the call-in info in this post.If you would like to talk to the host of the calls, one on one to learn more about the calls, you can reach out to her at; outreach@paincommunity.org and she will get in touch with you.
How and when to participate in the calls:
Call in number: 267-807-9601 Passcode: 491-268-096 and press the # key.
When: Every Tuesday: 7:00 pm ET
The TPC Outreach Support Conference calls are FREE, but please check your long distance calling plan to see if any standard long distance rates apply.
https://paincommunity.org/tpc-outreach-support-conference-calls-2023/
Take care,
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi Ryan,
Living with pain and having a spouse or partner who gets over stressed when we talk about our pain is hard, it’s just plain hard, isn’t it?
We want to protect them however we also need to be able to express our true feelings.
May I ask why he wants you to express your pain in certain ways? I know for many spouses and partners they worry about us becoming too depressed or isolated. They want us to be optimistic however sometimes that is just plain hard to do when we are in the middle of a huge flare.
When one spouse or partner lives with pain it does affect the other one in so many ways. It is absolutely good to acknowledge that they are affected by the pain and how it has affected our lives together.
At the same time, they also need to acknowledge that the one who actually lives with the pain needs to be able to freely share the bad days as well as the good days.I believe that sometimes they think they are truly helping us by trying to keep everything on the optimistic side however it isn’t helpful if it only helps them.
The stress that comes from a journey of pain is so abundant for all involved. Allowing all involved to admit it is stressful is helpful and normal and allows both to learn and understand how it affects each person.
I do understand you wanting to protect your husband and to take away some of the stress for him, that is what we do in a relationship, we protect those who we love.
However, what about you and your need to express exactly how you are feeling?I hope that together we will be able to find you ways to help your husband and his stress of hearing you are having a bad day and also make it so you can express yourself more freely.
Physical intimacy in a relationship when one lives with pain and illness is hard. Once again it is just plain hard on both persons however the person who doesn’t live with the pain sometimes has a hard time understanding that the pain does affect it. It isn’t that the person who lives with pain doesn’t love the spouse or doesn’t want the intimacy, it is a constant battle with the pain.
I have spoken to my health care provider because sexual intimacy can be affected directly by pain levels or by the use of certain medications that are used to treat pain.My best to you,
Take Care,TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi James,
I am so sorry to hear all that you have endured and are still going through. I was not in the military so I am not much help with the VA system. However, I do know a couple folks and I will reach out to them to see if they have any insight that can help you.
I have been seeing some commercials regarding the tainted water at Camp Lejeune I do hope that those affected are taken care of.
I would be honored to stay in touch with you to follow your progress.
As I stated I am not connected to the military however I have lived with pain for 30 years so I do understand that part all too well.
Take care,
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi Atoreous,
Have you tried speaking with your primary care provider? I have found that they can be helpful in steering us in a direction.
We do hope you will find a good match and receive the treatments you need.
Take care,
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi Ryan,
It is nice to meet you. We all need at least one person who we can be totally honest with when discussing our journey’s of pain.
I have been living with pain for 30 years so I get it. I also understand where you are coming from regarding Zoom meet-ups. It can be hard to stop the tears when we are talking about the pain and all that goes with it.
I would like to share with you a couple other options that may work for you.
The Pain Community has a hosted phone support group who meets every Tuesday evening at 7:00 PM. It is a great way to get and give support. Also it is totally okay if you get emotional on the calls, we have all been there and find ourselves sometimes just needing to cry and let it out with others who do understand. Here is the info for the support call and I do hope you will think about giving it a try. It is a small group who attends and there is never any pressure to share more than what you want too.
When: Every Tuesday: 7:00 pm ET
Call in number: 267-807-9601 Passcode: 491-268-096 and press the # key.
The TPC Outreach Support Conference calls are FREE, but please check your long distance calling plan to see if any standard long distance rates apply.
We also partner with a great support group on Facebook, it is a great place to meet and talk to others who really get what a life with pain is all about. It is called, “Friends In Pain” and it is a private group so once you join the only people who can see what you share are other members. Here is the link for you, https://www.facebook.com/groups/236329823140204
If you have any questions about the Friends In Pain group you can send an email to, friendsinpain@gmail.comI do hope you will find the forums here helpful and the other options that I have shared. If you have any questions about these groups or if you would like to set up a one on one call, to ask questions about these support options, you can email me at, outreach@paincommunity.org.
Take Care,
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Nuggetsvolum1,
I am so happy to read you found treatment for the GERD. Are you seeing someone for the neck and back issues?
I have multiple issues with my neck and back, the main issue stems from degenerative joint disease.
I hope you will find answers soon for your neck and back.
I also wanted to share that we have a support call every Tuesday evening at, 7pm ET, 6pm CT, 5pm MT and 4pm PT. It is a great place to talk to others who are dealing with pain.
The calls are open discussions, so all who attend can have the opportunity to share in the conversation if they wish. Those attending the calls may share as little, or as much, as they feel comfortable doing. Sharing is not mandatory; you can call in and just listen.Call in number: 267-807-9601 Passcode: 491-268-096 and press the # key.
The TPC Outreach Support Conference calls are FREE, but please check your long distance calling plan to see if any standard long distance rates apply.
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Heamicdan,
We understand the craziness that is happening in regards to treatment options. I wanted to let you know that you are not alone. We have a phone support call every Tuesday evening. On the call others share what they have found helpful.
We wish you the best.
The TPC Outreach Support Conference Calls are open discussions, so all who attend can have the opportunity to share in the conversation if they wish. Those attending the calls may share as little, or as much, as they feel comfortable doing. Sharing is not mandatory; you can call in and just listen.
How and when to participate in the calls:
Call in number: 267-807-9601 Passcode: 491-268-096 and press the # key.When:
Every Tuesday: 7:00pm ET, 6:00pm CT, 5:00pm MT and 4:00pm PT.
The TPC Outreach Support Conference calls are FREE, but please check your long distance calling plan to see if any standard long distance rates apply.
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi Lumberjack,
It is nice to meet you. Social media isn’t for everyone and we totally understand that. Have you given any thought to joining a support call? If so, we have one every Tuesday at 7pm. It is open discussion so everyone can join in on the conversation. If you would like more info you can read about it here; https://paincommunity.org/tpc-outreach-support-conference-calls/
Take care,
TPC YaYa
TPC Community Moderator
outreach@paincommunity.org“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi,
I have found a couple books related to living pain to be helpful.
Just Fine by Carol Sveilich, MA
The Truth About Chronic Pain by Arthur RosenfeldMy go to unrelated to pain reading is by; Nora Roberts, writing as J.B. Robb
Take care,
TPC YaYa
TPC Community Moderator
outreach@paincommunity.org“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi Joyce,
You can post by hitting reply under any comments that have already been posted or by starting a new posts. If I can be of any help please let me know.
Take care,
TPC YaYa
TPC Community Moderator
outreach@paincommunity.org“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi 6thdan,
I am so sorry your provider doesn’t listen to you. Are you in the position to find a different provider? There are still some good ones out there that do listen. I too have lived with pain for over 30 years and I do very much understand the frustration, anger and all the emotions that comes along with it.
Having support from friends, family and others living with pain can be helpful. We have a support call on Tuesday evenings. It is open discussion so everyone who wants to join in on the conversations can. If you would like to know more you can check it out at: https://paincommunity.org/tpc-outreach-support-conference-calls/
If I can answer any questions please let me know.
Take care,
TPC YaYa
TPC Community Moderator
outreach@paincommunity.org“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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