How is everyone ? How are all the regulars ? Updates

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Just wanted to see how everyone is doing ?

Wanted to see how all the regulars are doing.......maybe we can start doing weekly updates or just check in.....

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16 Replies

  • Posted

    Hey BillysPain,

    How very thoughtful of you to check in on everyone I like your idea of a once a week updates/check ins.

    I really want to apologize for not being around in a long while There has been so much personal drama, but you reminded me that everyone counts, not just me. We are a unique group, and everyone is always so caring and helpful. We definitely don't need to wait until someone has a problem. Too bad we don't live near each other I wouldn't mind getting together as well. I know many would like to remain anonymous That's ok but if anyone lives around me, I'd be happy to help out in person. I iive in the Wash DC area Pancreatitis has pretty much ruined my life in many ways. My pain is more controlled now, but I have a lack of energy. You can't tell by looking at me that something is wrong, i appear lazy with a lack of motivation. Maybe if I had friends around who understood, or was married, maybe that would help. I do know that I feel like a burden, so having you guys to talk to or even meet up with might make a great positive impact! Thank you for caring and thinking of this!

    Best Wishes!

    Sonya

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  • Posted

    BillysPain,

    I just looked up some of your posts and im so truly sorry you were going through such a hard time and asking for prayers and God's help, and I was not there to see your post I promise to pray for you daily Hopefully you will see this site soon

    Be well my friend,

    Sonya

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  • Posted

    I am among those whose life is ruined. Horrible pain in my back and chest. I can't find a doctor or pain clinic to prescribe opiates. I leave my bed only to go to doctor appointments, when I don't have to cancel them because I'm too sick.

    Just spent 9 days in hospital and barely got relief there. They sent me home, and I was back the next day, screeching and crying for 3 hours in triage. At one point, they left me for 2 hours, crying and out of my mind. I have pretty much given up. I'm 45, and used to be at the top of my game. I'm now bankrupt and beyond miserable. I wish I was dead.

    Thanks for asking. No one else seems to understand how bad this really is.

    As a side note, I don't qualify for any surgeries, especially islet.

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    • Posted

      I'm so sorry to hear how your life feels like it's spiralled out of control vedawms. With regard to BillysPain suggestion regarding keeping in touch I think it would be a great idea for people like yourself to not feel so alone. There's always someone here who can empathise with your pain, have a chat.

      I assume you have been diagnosed with Pancreatitis, acute or chronic and have done all the things we're told to do, like adjusting diet, take digestive enzymes etc so I won't insult you with a refresher.

      I think what most of us do is respond to issues that we can personally relate to, perhaps passing on info that the writer may not be aware of, to help where we can, if we can.

      I have Chronic Pancreatitis as well as another disease I was born with which is very rare and causes incredible pain, so a double whammy as far as pain goes I guess. Whilst opiates used to work when I was a child (for the other disease) they became less effective over time and I chose not to continue in a general sense although I still accept them when in attack just in case they work. They don't but at that point I welcome anything that promises relief.

      My doctors have always encouraged me to take opiates and none have ever considered me being at risk of addiction. I've never experienced that alleged 'high' everyone talks about either, I'd just be happy if they controlled my pain. They don't btw.

      What I've found, and this is just my experience, is that some pain meds can in fact have a paradoxical effect, increase the pain at times. My doctors tell me my pain, is like a spasm my brain latches onto and won't let go. It's relentless and severe and means I'm mostly put in an induced coma during attacks. The trick is to break that spasm.

      As a child of 10 I started teaching myself tricks to fool my brain. An example is when I'd convince my brain that a hideous medication was lemonade, that sort of thing. Simplistic, of course I was a child, but whilst my methods have changed I have various tools I use still. I don't take pain meds beyond Osteomol 3xpd. That's slow release and keeps pain mostly manageable. I'm still aware of it but I can get through my days. Until I have an attack of my other 'thing' when ICU do their magic.

      I'd give pain clinics another chance, try different clinics until you find one that fits for you, there are all sorts of methods that help people in severe pain. Drugs are definitely not always the answer and in my experience they can make things worse sometimes.

      The other thing I find helpful even when barely able to walk is to break my routine, force myself to change my pattern, walk 50 metres, force myself to go to the shop, little things, it really shocks your brain believe it or not and it can sometimes breaks the pain cycle, really it can. Sorry for being so long. Think about it. Dismissing ideas means nothing changes. Good luck.

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    • Posted

      vedawms.

      I am so sorry I can relate very well to you I'm the same age, most of the same circumstances I was in the ER several times a week in hysterics also a few years ago they cut my sphincter of Oddi I can't tell you what a difference that made It's something that they did by going down my throat to do. I can't think of the proper word for that type of surgery. They also started me on a really good pain and nausea meds management. With everyone trying to get rid of pain meds, I have had some docs reduce them, but I have never been left without pain management. Between the spinchterotomy they did, and adding pain management, I maybe only go to the ER but once a year now. I do have a lack of energy that makes me not go out like I used to like a normal person does but i believe you can be helped to be in a better state than this. If you want to talk please contact me anytime. If you live anywhere near DC i can refer you to a great, caring pain management team wishing you well you are in my prayers.

      Sonya

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    • Posted

      An addition not a reply as such. After I sent my previous post an item on the news regarding pain management featured. It's being used now for dental and pregnancy issues, like turning a breach bub.

      Whilst wearing virtual reality goggles the patient clicks for images which distract the brain and reduce or eliminate pain . The patients interviewed said it works well.

      My point is progress is being made, don't shut yourself off and miss an opportunity for relief.

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    • Posted

      Funny, I left MD because I couldn't get a primary there. Here mine just retired, and that's when opiods became nonexistent. I'll ask about Oddi at transplant visit this week. After 11 years, I'm just getting really tired and demoralized from the pain.

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    • Posted

      Hey, I just wanted to check in and see how you are and what happened at your appt. My pain doc in MD would have definitely helped! I wish we could have written sooner. What state did you move to?

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    • Posted

      Sorry for my delayed reply.

      I landed in the hospital for 9 days and had my transplant surgeon remove my gallbladder as soon as the pancreatic inflammation eased up. I feel like I just lost the entire month of March.

      After this, we'll look at islet, but I'm not sure if it's going to help with the pain in my back or not. I'm a poor candidate, but if it helps, I'm willing to take a chance at this point. I still have zero help on the pain control front, meanwhile.

      (I'm in NC, btw, being treated at the UNC-CH transplant hospital by Dr. Chirag Desai. I can't say enough good things about him and his team.)

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    • Posted

      Hey, thanks for your reply my phone died so I dont't know if this will be a repeat. I hope your GB removal gives you relief. It did for me. I just can't get over the fact of you saying you have zero help with pain control. I don't understand how that can be. Even the NIH changed their pain protocol for pancreatitis patients. I am really happy to hear you have a great doc who you are happy with. That's important.

      I know there are new problems for pain patients because of the pain meds guidelines, but there are many pain management doctors that understand and help the real needs of people diagnosed with something like we have. There is help out there. Ive been through it and have never been left to suffer, because thats what it is suffering. Nobody with this condition can live any kind of life without some relief. At least that is how it was for me until I got sent to pain management. Before that I didn't think I could go on. Does this doctor not help with it? Also, if its that bad and you need help, we can talk about it. If it affects your life, you need PM. I was having a lot of pain all last week, it was only because I could control my pain and diet at home that I didn't have to go to the hospital.

      Lastly, you mention islet cells. Are you getting a pancreatectomy? I have been considering it.

      Oh, I did take your advice and called yesterday to start disability. Do you have it? If so, would you mind telling me the process, how it went, how long, tips, etc...

      Thank you! Feel better

      Sonya

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    • Posted

      Sorry for my delayed response.

      It is correct that I do not have pain management. At least not with opiods. I have only been given medication to prevent muscle spasms, and they don't help the pancreatic pain. In the past, I had a daily prescription for Tramadol, but my primary care has closed her practice and none of my current physicians will prescribe it for me. I am told that the laws changed in December and that is is not possible to get more than a one-week supply. In any case, I have been unable to get accepted into a pain management clinic that will prescribe opiods. I have to "make do" with Tylenol, which does not help.

      Regarding my gallbladder surgery, it went well, but I notice no difference in pain. The point of doing the surgery was to see how well I could tolerate it in advance of my pending pancreatectomy.

      I have been told that I can have islet cell transplant (removal of pancreas) in August or September, once I hit the 6 month mark of sobriety. Looking forward to it, and hoping long term disability covers me until then...

      As for filing for Disability (capital D), get a real lawyer, not a 1-800 lawyer. They don't charge money up front. You will probably be denied the first time, but don't lose hope. It's the combination of conditions that may help you. Pancreatitis itself is not a covered condition unless you meet certain criteria, like EXTREME weight loss. Do all of your paperwork and do it on time. If you work, don't earn more than the max amount allowed. It's very slow going (more than a year), but worth the try. Good luck!

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  • Posted

    I am one of the folks that seems to have caught "it" early. I'm going on 2.5 years of pain and symptoms )age 35), but the last 6-8 months have been pretty good... This is because I got very strict with eating (20 grams a day) and I also starting taking pancreatic enzymes and antioxidants with every meal. No alcohol or caffeine. If I stick to this I have no or mild pain, mainly in my back (upper right) when it flares up (which seems like an odd spot for referred pancreas pain).

    I went through the gauntlet of tests and ended up having my gallbladder removed for no reason (this just made things worse-- I don't advise this). I think once I accepted this is never going away and started being more pro-active it helped. However, I am one of the early/mild situations and don't have the terrible pain people describe on here.

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  • Posted

    Please pray for me guys as I'm in more pain today than most.....I fear the worst...

    I'm not in a good place....my wife says she doesn't know me anymore.....I lay awake at night in anguish feeling as if my days are numbered.....I try to give it all to God.....but the pain keeps me fearing the worst.....

    God Bless all of us.......I pray that God gives the doctors, scientist and researchers the wisdom and discernment to come up with a cure for pancreas deseases and all cancers asap .I pray that they will share their research to help all mankind.....

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    • Posted

      Hi Billy,

      I just want to check in with you to see how you are and how things are going at home? I understand and can relate to all you said. The long worried fill nights, constantly praying and hoping.

      I feel terrible about the situation with your wife. My husband left to be with a healthier person a few years ago. It definitely doesn't make you feel better, to say the least.

      I want to keep up with your idea of us all checking in and giving updates.

      I had a lot of pain the last few days, I was close to going to the hospital but my pain meds were enough to take the edge off and at least let me suffer in my own bed. I'm staying with family since he took the house and emptied out the accounts. No money for a lawyer to help, My family doesn't even get it. Why should anyone else. I'm so sad of being chastized for being "lazy" Feeling sorry for myself sucks. The only people who understand are you all who go through this. I always say I wish we lived near each other or in one big house! No feeling like a burden then.

      I Hope you all are doing ok and will check in as you please. It does feel awful sounding like a complaining loser - at least for me it does.

      Wishing everyone my best.

      Sonya

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    • Posted

      I'm sorry to hear you are struggling, Sonya. Have you started disability proceedings? Lawyers will help get that rolling and only bill you if you succeed...

      Sorry to hear everything else is so rocky, but hopefully the pain is getting better?

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