Hey Spunk ...I may just have to admit to being a licensed medical person when I start my "We're Going to Treat Pain with Pain Medication Chronic Pain Clinic" Liked we talked about. It'll be a whole NEW concept in the industry!!😉😉. We'll get a whole bunch of those little house cabins delivered to our property here in beautiful scenic and serene Idaho. I'll hire more caregivers than just me and my honey. It'll be like a retreat resort that you live at...with people to cook 5 star meals ,delivered to your door of course, maid and house keeping service, laundry etc... and we'll use all our hound dogs as therapy dogs to love on and be loved by them....people can stroll through our woods or use the little golf carts on the little paved paths everywhere. We'll have a cool bus or something to take outings to all the lakes and parks and things here. Oh and all the other sites and sounds ( we're in a resort community) so there's plenty of shopping and the arts to take in... we'll have a staff that comes in monthly or whatever of like hair dressers, manicure/pedicure people, massage therapists...the men can go on fishing trips or hunting... everyone can help with the sheep , chickens,pig and we'll get a cow for fresh milk, we'll have fresh eggs and a huge garden for those that need "dirt therapy" and that'll give us fresh fruits and veggies. We'll have a main Victorian farmhouse with a huge kitchen for anyone that loves baking and cooking...of course canning all the extra fresh produce so our in house chef will have plenty for the winter and of course anyone that has something they make, craft etc... we'll have alittle place down by the road where folks can buy anything from something one of our artist/artisan "residents have created, to our overflow of canning/baked goods/fresh produce/fresh flowers from our flower gardens for those with the green thumb for flowers, to the local honey we already sell....how's that for a start? By the way, this really is my fiancée and my dream and partial plans for the future...doing what we love and sharing the experience/opportunity with those we would have new in our lives to love... peace,quite,serenity,privacy (if you wanted it) or never having to be alone again... A little peaceful community where you could do as little or as much as you wanted and have friendship/fellowship so no one ever felt lonely or afraid by themselves again. The only problem is I don't know where we'd get the medication!! Ha Seriously this is the plan for our future...we have over 10acres so there's plenty of room to start out with....but people would have to reserve early... because it can't be to crowded... I'll have to buy more land as word gets out!!! Why couldn't we??? Why not take matters into our own hands and become our own type of "medicinal retreat" with all of these beautiful things that heal us AND the pain medication we need to be able to live this life that we will have created??!! I'm gonna figure out how to make this work...they say you can't choose your family....bull! I'm gonna have a family of people that I can help and they will be helping me by being a part of our lives and allowing us to help and care for them...I swear we're going to do it... I know this isn't what you were really talking about...but since no one was answering...maybe this will make you smile and feel good inside,like it does me, just thinking about the possibilities... oh almost forgot we'll have to have a really big building, barn/ shop for a kiln and all the other big tools for woodworking or whatever we need for people's hobbies/creations for sale or just fun and pleasure....maybe a "pool building" for our indoor/outdoor heated pool, spa and steam room! Watch the snow fall in the winter from the hot tub....yummy! Well it's a start anyways...I'll keep ya updated on all the new ideas/ services as they come to me....luv ya girl...sorry I got so off track and soooo long...but big ideas take up big room...gotta get em outta my head somewhere.😘🙃😄
You're too cool BB! My son is a chef and I know he has an idea for a restaurant on the premise if the elements. I won't pretend I completely understand his idea although he had told me.. I love your ambitious idea and I'll help...um, I always wanted to have an old 3 story house and calling it Eclectic Sisters...1st floor would be basically traditional coffee shop...2nd floor would be the next phase in art of coffee, scones and Classical music in AM and then more upbeat in the PM with board games and the 3rd floor would be for the chess players, readers and ambient music... Course that was when I was a lot younger and before I lost my lung and got fibro... Oh, one thing you forgot were the horses... and maybe we can even have a weekend we could open it for the public and have our wares available, camping and a tent for cooking for guests and have material about understanding our "habndicap"...WOW! Are we ambitious aren't we? I want the bedroom on the ground floor facing the sun 😍 Yes, this is a nice idea and indeed gabve me more than a smile...❤️
Thanks all; I'm hoping for us on patient side to understand our roll and what you guys "hear" And maybe how we can better the bridge for better care... And this must be an even finer line for you guys to walk...how/what do you guys do?
Oh yeah Spunky opening it to the public is great out here they do "Farm to Table" with huge long tables for guest and everything the chef creates a meal is fresh from our farm! People pay big bucks to attend. So only 2 problems so far...we have to find the medication we need...maybe I could find an " in house" doctor and his team to come out once a month for everyone... Second we need an investor...they gave something i just read about yesterday...SRI which is Socially Responsible Investing...it where people want to invest their money in something that follows their values...so if you've got any rich friends,relatives, or Joe shmo on the stree
Out of the 5 Dr.s I see, the 2 that treat me like they care the most are both suffering from a medical condition. The healthy ones don't seem to care near as much and one belittled me so badly I thought about hurting myself for the first time in 8 years. Luckily I have people who noticed and stepped in and got me to a different specialist, but I worry about all the people who don't have hovering people who care for them. The one Dr. (Who I was referred to after my stroke and when my brain MRI came back looking like I had MS so she could do tests to find out what type of MS I had.) Looked at me and told me to go get a head shrink to medicate me out of being so depressed and stop putting food in my mouth and all my problems would go away. NO TESTS. My caregiver freaked out and called the company she works for and the lady in charge there called first of all to make sure I was ok. (My description of the dr visit is way shortened here...it was..horrendous. ) and secondly to see if I would stand up against this Dr because they have had over 75 other clients she has treated the same way (she's the only neurologist for 125 miles) and none of the others will stand up because they have no choice but to deal with her. I ended up going the whole Drive to see a good neurologist and finally got some answers but I hate that the only Dr's who seem to actually care are the ones who are injured themselves.
And we're paying for service too! Would we take that from a mechanic, waitress or hair dresser? So why do we cower so?
My hat's off to you and a Way TO GO! 75 other people and it took that many for them to do anything? I made a typo (bad one) but I was let go...cost the company many thousands of $...but this doc knows basically nothing can or will be done...
Can we threaten, with making their insurance go up? Is that all we have to do is complain?
Label me dependent in my chart; but also state " I never discussed alternatives as I will refer to her PCP" or that Patient refused drug testing "she didn't want to pay $565.00 for test--doesn't have prescritpion for narcotics"
Why is it all to the benefit if doc and we don't get our side in our charts?
@ElentraVitra, have you looked at your records? Are they accurate? And I'm taking it this person is no longer available to "practice?"
I haven't seen what's in her records about me no. I wrote out exactly what happened and talked to a lady who is on the hospital board (dr is hospital backed) and she said as much as she'd like to say I was exaggerating, my direct quotes sound just like her. So she's got a copy of what happened, but I don't know what else to do. Oh, and my insurance company got a copy. But this has been in the last 4 Weeks, so I'm hoping something happens, but right now, she's still practicing.
Ah, I've got an appt to go back to the person whom labeled me without even an alternative biit injections in spine...what are we to do when a Back Surgeon specializes in this sort of thing says injections are mire harmful than the benefit for you...and docs don't seem to want to hear that!
Goid luck with this duck of a doctor! I hope she gets treated the same way at some point si she can understand just how demeaning and disrespectful she has been! Makes ya want to have a tape recorder eh? But why would we make something up like that? It hurts to even admit that we were dismissed!
Keep us posted on how it goes...would be interesting to see her evaluation of the visit... But made a statement: "sounds like her" so how could they not reprimand her if they know her character? Surely, they could get someone else... See, how many others will suffer? And like you said, you had an advocate! Gosh makes me want to drive iver and smack doc down for ya! I can still do a 1-2 combo from when I had to fight my brother! Hehehe
I had a similar experience with a neurologist in my town. Fortunately my GP lets me run my treatment plan. I am retired RN & it has helped as i wont tolerate idiot Drs & i research treatment options since i was diagnosed some 20 years ago.
Often you can obtain your medical records (for free). If you are nice to the records person tell them you are moving and would like a copy of your records for continuity of care by going with the saying you're moving and you don't have a doctor's name yet they can't say oh well we'll just send them to that doctor it works sometimes sometimes not, worth a try
So last couple times the ER docs have been asking about numbness...I've been telling docs numbness (liken it to novocaine wearing off-but of course feeling doesn't come back) now they don't seem to be concerned... I'm afraid I'm going to get so bad and docs are going to say, it's too late now, if you came sooner we could have done something...and what about them asking if you've had issues not being able to hold your "water" etc? Is that different than getting older thing?
Question: docs offixe did a "random" MAP on me...Right! Anyway, if they can get that record, is it possible for me too? If so, how and if not: why not? I'm thinking this equivalent to a bad report on your credit report..but of health!
What do you specifically want to know? Living with chronic pain has made me more compassionate and empathetic toward people in general. If someone tells me they have a level 10 pain, I believe them. I feel often times opioids are handed out like candy. There are other times I feel that opioids should be given out. The problem is, long-term use of opioids actually increases and intensifies pain. That is why I do not take any. I was diagnosed with fibromyalgia in 1997. Since then I have seen numerous types of doctors. Not one doctor has told me to exercise, change my diet or try natural alternatives. I am very fortunate that I also was able to get a doctorates in naturopathy. That really opened my eyes. I prefer to do physical therapy, occupational therapy, regular massage, daily exercise, meditation and gluten-free diet to manage the pain and stress of fibromyalgia, trigeminal neuralgia, occipital neuralgia and TMJ. I think the medical community should be more open to natural alternatives including medicinal cannabis. Not enough teaching to help a persons body help itself. It is much easier for a doctor to hand out pills and recommend surgery. Doctors don’t make money when you don’t go to their office. Any questions or anything I missed let me know.
I have a question...you said "I prefer to do" what about those of us that 1. Have no medical insurance so those other therapies are not an option 2. Have tried alternative therapies to no avail... shouldn't we have the right to say I would prefer to use an opiate because I know it works. Most people dont remember that these medications are Sometimes addictive...to Some people...NOT all. But now with this new attitude about this opiates ( in my opinion and many others) hysteria...we are left with No help, in constant pain, watching what was our life slip away. Take yesterday's talking points from the govt. It an "epidemic" because 100 people die in the US a day from opiate overdose. First I don't believe that a good number of those are not from liver failure due to the acetaminophen that they but in pain medication (not to help the pain management, but to try and make it so it's not abusable) and even if it was 100.... sorry to sound harsh...but not a huge number, not an epidemic....I looked up how many death a day from achohol...there are 241 achohol deaths and 6800 + deaths attributable to achohol A DAY in the US...so why are those of us who have long histories of managing our pain in a correct way with opiates being treated like addicts and what should we do, just lay down and give up? Sorry so long and not trying to attack you just dont have anyone else in the medical profession to ask. Thanks
I’m not judging anyone. I used to take 20 different prescriptions a day. It made me feel way worse. I warned off everything. This is why I said I prefer. It’s my preference and mine alone. I’ve been without insurance 8 out of the last ten years. I’ve been fired from my job because of my medical issues. I have not worked since 11/16 and have zero income. I’m living it right now. I had to fight to get on state insurance, which is pretty selective about what it covers. I understand about needing therapy it alternative treatments with no insurance coverage. Check around by where you live. My doctor referred me to a free/low income alternative medicine clinic that provides massage, acupuncture, chiropractic, etc. I have not been able to go yet due to transport issues. But those clinics do exist. I might be getting off track so I will start new reply about opioids.
Ive gone the opiate route myself back in the 90s. I took all sorts of opioids, lots of them on a regular basis. They made my pain worse and yuck on side effects. I tried and it’s not for me. I do have Vicodin, Percocet and morphine at home in case of emergencies. But I find I’d rather use essential oils or herbs or something more natural. I never got addicted but I did take a higher dose than I was prescribed because lower doses didn’t work. Since I had real pain, I never got the high feeling. I just wanted pain control. In the last 20 years, I have tried so many treatments like medical, medicine and alternative. I can’t even tell you. I have a list for pages long, 10 point font and singlespaced of everything I have tried and failed. Nothing really works for me at this point.
I was a hospice RN for almost ten years. I worked with people that had excruciating pain and were dying. I cannot tell you how many times I had to fight tooth and nail to get my patient pain relief. The laws make it so difficult for a doctor to prescribe. Just think, if it is that hard to get pain medication for a dying person, it’s going to be even harder for a chronically ill person. All doctors are under the microscope, especially the ones that write prescriptions for opioids. It is not that doctors don’t want to give people pain relief, they are afraid. One too many prescriptions for opioids and they can be investigated and lose their license. My friends doctor was a pain management specialist at a pain clinic and he lost his license for prescribing too many opioids to his patients. I really think doctors want to help but can’t or won’t.
As to why chronic pain patients are pegged as addicts, I don’t know. I never felt or treated anyone that way. I think each person has their own path to follow. There are new studies showing that opioids make chronic pain and pain sensitivity worse if taken long term. (That’s how I felt when I took them, worse pain and fog) I think doctors are trying to find new ways to help with pain relief but there are limitations such as insurance coverage and limited thinking.
The healthcare industry should be called sick care. If people were taught how to eat, exercise, de stress and cannibas (a natural plant) would be decriminalized, chronic pain patients would have way better quality of life and more treatment options. Until then, we are all stuck in this muddy abyss. You think you’re being judged for opioid use, try shunning that. When I tell a doctor I prefer to use natural therapy, they don’t want to take care of me anymore. They think I am crazy. So being on the opposite end of the spectrum can also be really stressful. Most doctors are not keen on prescribing alternative therapies.
I encourage patients to get an advocate (family member, friend or even a community person) to stand up for you when you can’t. Find the right healthcare team that supports you. It took me almost 20 years to find the right team but I did. Most of all, never give up.
I apologize I probably rambled on and on. Heavy fog today. I hope I answered your questions. If not, let me know when I missed or what else you need to know.
No I didn't mean you were judging and I certainly am not judging you...I just meant shouldn't we all be able to choose our preference... choose what we know works and doesn't work. Especially those of us who are trying to do this the right way with medications i.e. don't ask for increases, don't abuse our medications etc. This new attitude is making it so that the minute you tell a doctor you're in pain they automatically assume you're "drug seeker"
I agree we all have our own path and should have choices. I prefer natural and others prefer medicine. Everyone should have a choice, natural or prescription. Unfortunately, people (doctors, medical staff, etc) are human and prone to judging people. I decided long ago, I do not care what other people think about me. I care what I think about myself and I will do whatever it takes to feel the best I can. Let the crazy judgments roll right off your back. Stay strong. Hopefully things will change in the medical field. I just don’t see it happening anytime soon.
No it wasn't a ramble I appreciate you responding I think it's something that needs to be talked about so that everybody thats being treated this way gets on the same page and start saying no I'm not going to be treated this way so again thanks to Spunky for starting the thread
I disagree about pain meds not working or making pain worse..I had been on just pain meds for over 15yrs and I did just fine.. I have been without anything and my quality of life, my ability to drive or walk anywhere is extremely difficult...riding the mobile cart at walmart (if I can even get one) is quite painful and I have no meds to help!
I know you can feel for me, you can agree...okay fine What can we do now that we all agree?
Hey LAT I was wondering do you think you have Percocet, Vicodin and Morphine in your house for emergencies, and the rest of us are having a hard / impossible time getting a freaking baby aspirin from doctors is because you are a former nurse or what? Im sure you can understand that's alittle more than hard to take when you suffer so much each day without hope of relief.
Think I'll grow poppy plants before they're outlawed! A friend said he'll go downtown Detroit and find me some meds! And that's what we're coming to? So what category will that put me in for this epidemic crisis?
My medicine has nothing to do with my former career. It’s not like a nurse can ask a doctor she works with for pain meds and the doctor hands them out. That is crazy. Most doctors have told me it’s all in my head, just like the rest of you. I don’t get special privileges. It’s all about finding the right doctor who listens and understands. I haven’t filled opioid scripts in over four years. My opioids are expired. I keep them as a safety blanket, even though the potency is probably gone. Could I get a prescription for opioids from my current doctors? Probably. I have not asked. I also don’t feel the need to ask. I choose to manage my pain differently. I can only speak for myself.
LAT all I meant was ...I was wondering if a doctor now, would give want you say more weight because you used to be a nurse...in other words like you would know what you're talking about when it comes to pain. Don't assume. I certainly wouldn't infer that the guy you worked for was handing you pills in the back room for Pete sake. I'm trying to understand this and get information on why there seems to be such inequality in the medical industry now. Some people get alot, some people get alittle, seems like most people get nothing. I think I'm done with this thread....maybe the whole app...I don't think it's helping... people are really desperate to just get their lives back and the medical industry ( maybe I should call it the government run medical industry) is now in the business of NOT treating pain. It has nothing to do with overdoses or addiction or helping people. Somewhere somebodys making money from this...that's always the way in government. I talked with a stranger that was coming out of the same store as me the other day, and during our conversation he said...in the 20s and 30s the government was trying to stop the mobs booze running, and numbers running etc. NOW the govt in in charge of the drugs and who gets them and who doesn't and they are running and profiting from numbers running (the lottos) he had another example i can't remember...anyways I don't think it helps for us all to just tell each other how much pain we're in and how bad it is... nobody seems to want to think what to do... everyone is just acting like "oh well this is wrong, we're defeated, we might as well give up" and even worse alot a people actually are convinced that opiates are BAD, oh my gosh the epidemic SOOOO many people are dying....and still other people are scared, feel bullied and intimidated by their doctors and the govt. Hey that's what the mob use too .... intimidation! Threat of physical suffering....they beat you up....they killed you. But hey look how good the new mob is...they don't have to pull the trigger... people are in so much pain ...they kill themselves and guess what....it's all covered up and neatly tied with a bow...oh the poor dear was just so depressed...must not have been shoveling in all the anti-depressant ( poison to mind and body in my opinion) that we are pushing on them....and the numbers of deaths are all nicely covered up as mental illness... My God people this is serious business... this is organized torture and torment...and no one seems to be asking if caring why....they got us so focused and occupied and without strength just trying to get thru each day... of our painful tortured lives...I'm have it I'm done!
Absolutely I don’t have any special pull because I have medical field education and experience. I tried to find a new neurologist. Finally found someone close to home who could fit me in. He told me there was absolutely nothing wrong with me. He proceeded to do some sort of adjustment that left me crippled with pain and barely able to move for two weeks. I tried another neurologist. He introduced himself and said - I will not fill out any paperwork for you because I can’t prove you have migraines. They both knew I was a nurse. Didn't make a difference. At this point anyway, I’ve got way too much brain fog happening. I was at the dentist and couldn’t think of the word epinephrine (I have an epi pen in my purse) and I was flustered/embarrassed. Thankfully my dentists wife has fibro, so he understands and was very gentle.
I go through the same daily struggles you do. I have severe, uncontrollable chronic pain that doesn’t respond to any medication. I had to swallow my pride and get food stamps and go on Medicaid. I applied for SSDI 12/16 and still waiting for any response. I lost my career that I loved. I want my life back too. We are in this together.
I can understand what BrokenBlossoms was asking..That's why I asked the question of how you guys deal.
@Lola, BrokenBlossoms said this doesn't seem to be helping because we aren't talking about real solutions..And apologizing for LAT going through so much and not getting special treatment...how does that help? Some of us don't have doctors to go to...nor people to call on for help! Gee I'm sorry all of us are having such a hard time! Ok now what?
But to sugar coat what is going on and not stand up to the bureaucracy and lack of proper treatment..is worse!
The UK is also having a hard time With the meds this thing/epidemic/ill treatment seems to be GLOBAL...why?..and among the your so sweet and no you're sweeter gets us no where...what can we do..let's try to figure something out..without apologizing or feeling slighted in someway? Can we have constructive dialogue--we're mostly adults...
We've all been on here and know we're friends, but the sugary drool doesn't have to be given to every single post...it tends to make it insincere...ya know? And it doesn't help us get anywhere...A time and place...(In case you need an example: conversing on thread about being at the end of rope: I felt this way and to have 5 people tell me I had something to live for, don't give up, I can realate even tho I never wanted to hurt myself--okay but where is actual help in that? I know I have family that care. etc but practical help..do you understand what I mean?)
Lat: Your response is of course you don't get special treatment...which I thought maybe knowing the right language made a difference..I am totally honest and it backfires...like not taking a drug test because I don't want to pay$565.00 In my chart it just says I refused! So in that way, what do we do? Or say? Are we suppose to just lay down and say okay do whatever? As in "I'm your huckkeberry"?
BrokenBlossoms, I know you were asking a real question and trying to get solutions to this epidemic..me too..We shouldn't have to drive 500 mls to see a doctor and we shouldn't be treated like criminals...or told our pain is in our head! Why can the doctors be so pompous and arrogant and deminish our pain, self esteem and make us suffer? It is so one sided!
It is frustrating to read how much pain we're all in every day...kind of like those pain charts..after a week, 2-5weeks and your pain level has not dropped nor likely to...you think: what's the point? Who cares? Nothing being or can be done...are we ready to give before we actually tried to do anything?
I'm more worried about the ill treatment of chronic pain sufferers than if someone missed their periods or can't have sex anymore...5 posts from same person just because they are bored..ya know?.... Anyway, LAT: any ideas? Or whomever is stalking have any ideas what we can do?
Spunky.... I get what your saying and I know that I'm not solving anything. But do not tell me that I can't say things like sorry your having a hard time! That's not for you to decide, On posts that I have put on here people have been so kind and yes it hasn't solved all my problems but it cheered me up and made me happy that's all personally I'm tying to do on here. My focus on being on this app is to get advice and help other people allthough the "opioids crisis" plays a big part in it that's not the main reason I'm on here. I have met some amazing people on here who have helped me on some of my worst days and I have helped people who have been on there's and that's what's most important to me.
And at the end of your post you've refferd to my post on missing periods! I put that post on because I was worried I had endometriosis that can cause you to be infertile. And if someone posts 5 posts maybe there lonely and need someone to talk to.
Hey people let's quite using their terminology...opioid epidemic??? How about pain epidemic or people who are being being abused by their doctors epidemic... people without medical help epidemic.... And hey Lola I didn't get that Spunky was telling anyone what they can't do...but more asking what CAN we do TOGETHER to change things for the better for everyone....and i think she was also saying ...can we talk about this without everyone being so very touchy...I think if someone wants to slight another person on here they would just do it...there's no reason to hide and kinda say it...after all it's just screen names...why would anyone go to the trouble of being subtle? I still haven't had time to start my thread....and believe me I will make it very very clear what I mean...I am and I won't speak for her but I think Spunky's upset is directed at what's happening to us and that we all need to try something...anything to regain some control over our own healthcare and treatment and sometimes it does get frustrating that everyone is focused on who can "be the nicest" person on here....you can go ahead and not like me for something I've said....but at least I'm trying to be proactive...I hate to say this but being that your healthcare is free....I don't think you understand how hopeless it is for us...not only the pain but also the not being able to afford an initial visit much less all these specialist and "alternative treatments"
@Brokenblossems I'm sorry I'm not using the right terminology for you! I'm not trying to be the nicest person on here I'm just trying to be kind. I know my healthcare is free and I've always said how great flu I am for that and I feel awful that people in the US don't have that but I still get treated bad by doctors.
Frankly, just to put my own two cents in, it's really easy to misunderstand a meaning without the visual and verbal cues. The niceties may seem to be unnecessary fluff to some ppl, but to others it helps when things can be horribly misconstrued with text only conversations. Putting down someone's way of communicating is simply another way of blocking that communication and alienating ppl that, in the long run, have every right to contribute and may also have valuable insight. I appreciate the desire to get to the brass tacks, but I think I prefer going the route without hurt feelings and judgment calls. Also, discounting Little Lola's situation because her "healthcare is free"? Really, did you just do that? I'm opioid dependent. I don't have insurance. I live in the us and am struggling to get my disability. If they cut off my opioids I will kill myself. Even with those things, her insight and kindness have actually kept me from spiraling into a hole these past few days. Just because someone's experience is slightly different doesn't make it invaluable. Their health Care may be free, but that doesn't mean it's good. Can we please stop putting each other on the grill and try to have actual ideas instead of taking out on everyone? I'm gonna get blasted for this, but I really don't Care. I am giving an honest opinion of a situation to ppl that I think really need to hear it. Again, it's my opinion, but we're all hurting here. Can we try not to hurt each other more?
Phoenix Rising I've gone back and read your post 4 times I've also gone back and read mind several times and for the life of me, maybe I'm just dumb, but I don't get it maybe you could reread mine once it might also help for you to know that LittleLola and I we're speaking back and forth this morning on another thread Flare Up I guess the discussion started there. I agree with you that just texting can be misunderstood easily it has never been my intention to alienate anyone and of course LittleLola and everyone else has every right in the world to contribute whatever they see fit I do not see however, in my post, how I discounted her situation in any way. I think if you reread it you will see my words say I "think" you don't "understand" as far as how she might feel being in pain and not having the Hope or possibility of even seeing a medical quote-unquote professional and as far as you being opioid-dependent and if they cut off your opioids, you would kill yourself, in that same thread I was speaking to ScruffyCub about the fact that the doctor told them that it's just pain it won't kill you. I guess that's what got my ire up this morning in the first place is that I believe it will kill you in several ways that being one of them. I can't remember the name of the thread where I spoke to someone yesterday or maybe this morning about how the government neatly ties up in a bow all the opioid overdose deaths. But the people that are in so much pain and misery that finally end their life because there is no relief from the torment of their pain that they do kill themselves and then were told how many suicides there are from depression .... and they patronize us by saying .... oh the poor dear probably didn't take her antidepressants that we are shoveling down her throat ... (which in my opinion are poison to both mind and body ) nice neat shiny little bow. Does anyone take the time to find out how many suicides are not from depression but simply from the fact that we can't live with, deal with or simply can't endure the pain and hell in which we are being forced to live in. And of course we all want to be kind and caring and sweet but sometimes when it's time for a war someone has to yell charge and it isn't always sweetness and light. They don't whisper it they yell it they don't put in parentheses (in my opinion) all the time, it's not always considered politically correct or warm and fuzzy I think spunky said something like there's a time and place for everything in other words... we're all adults here as spunky said or most of us are of age. that's all I think spunky and I are trying to say, sure we're all on here for the same reason or at least some of the same reasons but does everybody and I'll preface this by saying that I'm being a little facetious here but does everybody just want to sit around on their ass typing into this app and kiss everybody else's ass.... does that make your pain better or is there something as I said in my post something, anything that we can do together to make it better for everyone??? as I also said in my post, Can we all stop being so touchy??? I think assuming that someone is being hurtful is a bad thing... like I said would anybody really feel the need to be subtle or beat around the bush about being hurtful??? if I wanted to be hurtful on this app I just would be. we're all using screen names so there's no reason to hide how we really feel. I don't know, maybe I won't start another thread to really try and figure out how we can ALL try and help each other ALL get somewhere with this and make ALL our lives better, lesson ALL of our pain and make it so that we can actually maybe go out and live our life or lives that we used to have which are now fading away because we're trapped in our bodies of pain. Isn't that a good thing to try and gather people together for a common purpose a common goal for the good of everyone involved or even those not involved. I mean really, did you just do that? Look at the time and energy that has been wasted and I do mean wasted, talking about this, instead of the issue that is at hand and I do feel that that is the issue at hand. I've always disliked the name of this app Pain Companion... I don't want pain as my companion anymore than I have to. I came on this app to get better educated, talk with other adults in pain about how they're handling it and what everybody's doing about this incredible travesty and Injustice that we are being forced to endure because of our government. Not because we deserve to be in pain, not because opioids are addictive or bad for every single person that takes them. Opiates are SOMETIMES addictive to SOME of the people that take them.... but because of the few that have abused them.... they tell us.... the many are suffering and oh how we're all suffering just re-read all of the posts on this one app to refresh your memory on how we are oh so suffering.... but that's kind of my point I for one don't want to continue to suffer needlessly. Do you?
Hi Brokenblossems I completely get where your coming from but I don't think the way you or spunky went about it was right, spunky telling me that posts about missing periods isn't important but I put that post up about missing periods because the doctor thinks I have a medical condition that could leave me infertile so hell yes that's important to me! And not everyone is on this app to talk just about opioids I came on this app to find friends wich I have done!
And I don't think we're all here kissing each other's asses. People come on here for some support including me, Some of us don't have family so they just need to hear the "I'm sorry your going through this" including me!
LilLola: first of all, I'm not telling you to do or not do anything....
2nd: if that was your post I had no idea, it was just a topic I glanced at before coming back to this thread They are just examples...just as this may not be very important to you; you could state something to that affect if you so choose. Doesn't make it any less important to the author or others..
So for you having socialized medicine and going through same issues. I would think you might want to discuss what can be done and if there are others who've thought the same or are trying to do something..
I was just saying please don't quote someone else's post because that post might be about something very important to them just as this subject is very important to you! Of course this subject is important to me but I'm on this app for other resons as well.
Right, ok, I've not been on for a few days and I come on here to post about my stuff and offer what I can to help others. Sometimes to help others it's nice to say "I'm really sorry your having a hard time" or just to let people know you're listening because in this app we are from all over the world so how is it possible to offer practical help? Im in the UK like LittleLola but we live at different ends of the country so if she's struggling I'll just go to her to take her to her doctors appointment where the doctor is soo rude and saying they won't prescribe any pain meds at all because she's too young to have chronic pain? Or should I take the 10 hour flight over to MizzMonroe and do the same for her and pay for the meds that she can't afford to get that if she doesn't have she will actually die? Yes if she doesn't have her thyroid meds she will die because since she had thyroid cancer in her early twenties she doesn't produce anything so her thyroid med does actually realistically keeps her alive. I don't have the means to offer anything more than support and advice to people on this app so there is no need to tear into other people for doing the same, It's not about who can be the nicest it's about letting people know that you get it, it's about giving advice to someone who is worried about something, just because it's not important to you doesn't mean it's not important to them and the amount of posts someone puts up is down to them you don't have to reply and if you do there's no need to belittle anyone.
WE ARE ALL IN PAIN AND DEAL WITH THAT PAIN DIFFERENTLY AND RESPOND TO OTHERS IN THE WAY WE THINK IS COMPASSIONATELY
I can tell you 100% that over here as soon as you say you have chronic pain most doctors think you're a junkie and it's all in your head. We get free health care but that doesn't mean our doctors aren't under the same scrutiny your doctors are under. Also our free healthcare doesn't offer alternative therapies so if we want to try them then we have to pay for them ourselves which let me tell you isn't cheap at all. I have reiki every 4 weeks and I can only afford it because the practitioner understands my financial situation and let's me pay weekly at a reduced rate. I would love to have acupuncture but can't afford it not only because money is tight but my daughter is type 1 diabetic so I have to take her to a lot of hospital appointments like to see the diabetic psychologist because she's struggling to process why her then why me etc.... on top of her diabetic clinic appointments.
I think it's a great idea to try and hash out a way forward so we can go to the government's and say enough is enough but don't attack people for their offering support and understanding to others, you don't have to respond. There are people on this app who's only contact with the outside world is thro apps like this, there's great support and some of the suggestions on here have actually helped me a great deal and the support is second to none. I hope everyone has a good night/day with as little pain as possible xx
Oh for Pete's sake...if you "totally get where I'm coming from" you'd "get" the spirit of the thing...what we're trying to talk about and not pick it apart and find every little reason you are hurt or insulted or what the hell ever else....go ahead everybody crucify me for this post!!! I have try all damn day to start something...get people going in the same damn direction to do some good for everyone suffering chronic pain...I'm done with this! If it means so much to you that you missed your period go find an app about infertility!!! Now that was probably hurtful...but nobody's has stop to ask how you might have hurt our feelings today...grow the hell up !! Maybe take the "I " out of more of your sentences, and stop seeing an insult behind every word. I'm really really sorry....I'm so freaking sorry... I really thought people might be interested in trying to do something to help everyone find an answer instead of ( what today has been in my oh so very humble opinion) has been nothing but mental masterbation. Don't bother anybody...telling me I should go away with my so hurtful opinions....I'm done!
Firstly I'm not crucifing you but for heaven's sake why the hell do you feel the need to be soo bloody hurtful? ""You missed your period go find an app about infertility"" the isn't a "probably" hurtful that is damn right nasty. From reading the replies going back and forth LittleLola was offering support and understanding but YOU and spunky have attacked her for no good reason than she was being nice and your wondering why you've had these responses? Maybe you need to reread your own responses thro someone else's eyes to truly realise that there was no need for how you responded and the language you used. You will get more people follow you if you use more open and sympathetic language and not pick apart someone who tries her best to offer others support and understanding.
I get what your trying to do so start a thread about it or better still go create your own app about it.
Everyone on here is in pain, most of us are being treated like junkies because we're on pain meds I mean I read an article about people misusing gabapentine yesterday so the government's are going to start putting more meds on the controlled lists and that needs to stop but don't alienate the very people who will back you by picking apart their comments and support.
Most people came on here originally to log their pain to show their doctors, I'm one of those people and I was very pleased to find that there are other people in the same situation and can relate to my journey in this painfilled life. I didn't come on here to fight the government's that wasn't my first thought but I will join any fight for a better quality of life especially if the spokesman didn't pick others apart for being nice
Wow. OK. So frustrations make you want to hurt other ppl. Thanks for that. We know who's words to take with a grain of oh so much salt. I'm sorry that you thought any of this was directed completely at you and that you thought that this app was really and truly going to fix anything. Its here mainly to help ppl with similar issues find each other and yeah, maybe there's ego stroking if someone is depressed or hand holding if someone is scared. Screaming at each other and telling them that their problem is not as important as yours and to get an app??? That's definitely going to get lots of things done (sarcasm). And hurting feelings in a group of ppl who are all trying to find their way IS important. I'm sorry you feel picked on or whatever, I'm sure little Lola did too. That wasn't the point. The point is that we are here because we hurt. Its a group therapy type of situation. It's not really a think tank to solve the world's opioid discrimination. The only thing we actually have the power to do here is to help each other. This is for support and some guidance. No one is going to solve the government's issues here. So if that's what you're here for, I'm sorry, you should be lobbying in the real world not in group therapy. This whole app is for helping, healing NOT hurting. So being abrasive and hateful solves nothing, as you can see, and only causes more issues and distractions. She was hurt because, again, text is difficult to tell nuances that's why the niceties are necessary. Don't wanna do that? Fine, but we aren't the only ones you're going to find having an issue with it. It's simple human nature. say what is important, but if you want to be heard, say it with enough tact that ppl hear your meaning and not just the snark. As for the opioid thing, I was serious about the end of me. And yes, ppl with chronic pain are 10 times more likely to commit suicide. Just another reason to observe the niceties. It's not that we go looking for hurt feelings, but when we're already in pain and despair, simple words can mean the difference between silk and sandpaper. But either way, I'm done with this discussion as it seems to be going nowhere but downhill and I'm too tired to keep trying to keep up with it. But, for the op sake, I think its a horrible thing that our government and others are trying to do by stigmatizing us with our own opioid necessities and allowing the real problems (like alcohol, street opioids, chronic illness deaths, accusatory doctors etc) to multiply exponentially. What to do about it? Complain, lobby, write your senators. me? I'll take anther pill until they take those away, and then, well.... then I won't have to worry about anything anymore. I'll be a statistic that you guys can take to the government and use for your cause. I'll even write you a letter.
(My app/phone messing up so hope this comes through)
With all this being said..back and forth finger pointing...has it occurred to any of you that maybe Blossoms is really having a really hard time coping with life and lashed out because she hit the proverbial wall? Don't you think She might have needed something from you? Did you stop to "see her pain" ? I think not..you may have taken it for granted she's just being hateful and saying these things to be mean...I have never read any posts where she was cruel to anyone; was kind and helpful...I know she picked up my cue of being in a very dark place...Just as you did Sezzy... maybe we are seeing her "dark place" so who's judging---
@Spunky I understand that but in my darkest days I would never be as nasty as she was on here if you think that saying "if your missing your periods get a infertility app" isn't insensitive or nasty?!? And belive me I'm not judging her but the way I've been spoken to tonight there's no excuse!
And I'm sorry if she's having a hard time, But she even said to me that saying "Sorry your having a hard time" isn't right! I'm having a really difficult time but I don't come on here and take it out on other people.
Spunky you know I will help anyone I can especially when they're in a dark place, I've been there and in this rollercoaster of life I may end up back there again, but that doesn't give anyone the right to be mean and nasty. Ok being nice and saying "I'm sorry you're having a hard time" won't help her but then she needs to give us a clue on what to say and do to help her, we are not mindreaders. As I said before I've picked up some very good tips that help, some help a little and others help a bit more and I'd be happy to share them with anyone and I'm happy for anyone to pm me and share their worries and troubles, if I can give some advice I will, if I feel a bit of tough love is needed then I will say so or if you just need a listening ear I will be here.
I am very interested in post to hash out ideas of trying to get our government's to butt out of doctors business so they can actually help us as you already know.
I understand that pain and being frustrated can make you speak out of turn and be rude, but commenting on somebodies fertility is just plain nasty. Littlelola is one of the nicest people I have spoken to in this app, she's helped me quite a bit when I've struggled recently. This app i thought was for helping people, to talk to people, to share stories and to engage with people with share similar pains
Spunky that being said on the flip of a coin ok blossoms having a hard time but how do you think her words have affected LittleLola? Do you think she's sitting at home at 3:30am laughing because her offering support made her the brunt of some very hurtful words? Or is she at home in absolute tears and shaking from head to foot because her support and understanding was picked apart and her posts which are important to her were made trivial as if they're not important? Ok so missing your period for 4 months with painful cramps and the possibility of becoming infertile are not important to everyone but the person who's going thro it on top of their other conditions it is.
Sorry Blossoms not trying to put words or ideas but I've read other posts and you've never sounded this upset. I hope you don't leave and stay...you have insights and are a valuable person and have every right to state your opinion whether people agree or not... May your tomorrow be better than today...friendly 🤗 💕
Really smh. On this one because everyone on here means well and helped me a lot and I appreciate all of you. 🤗🤗 Yesterday I took something personal as you all mentioned easy to do in text. Littlelola helped me through it. As I know anyone of you would have done if I want to any of you.
I guess my point is . You all are the best and I am sorry the way this day went but. Tomorrow is another day so let's all move forward. Let's not give the government what they want and turn on eachother. 🤗🤗🤗🤗
Everyone stay strong . Positive and understanding of everyone's pain.
Hope everyone has a wonderful pain free as much as possible night. Hugs around 🤗🤗🤗🤗🤗🤗🤗🤗🤗
Sezzy; yes you are very helpful and even go out of your way to try to help others...however you can... most of if not all of us try to be helpful and accommodating to others...maybe ar our own expense too and maybe it's harder for some people to state they are hurting so badly...
I'm not making light of anyone's feelings...what was or wasn't said or intended..not my place..just know this isn't typical...
You know many things we say can be hurtful even when we think there isn't anything to what we've said..(I'm thinking way more than I'm typing)...we all hurt, we all hurt to extremes, we try to be patient and kind and understanding...considerate and sometimes we explode... When I had been told one too many times "we don't give narcotics--why are you here" I just couldn't help but say "f**k you!" Did he actually deserve it, should I have said it, could I have found something better? Yes or no to all of them but at that moment, I didn't choose anything else...and it will follow me I'm sure...but I'm beyond caring...I'm becoming a bitter person because I have been fighting far too long...
I know that some people find it harder to admit that others that they are hurting. But personally don't think it matters how low you are she shouldn't have said the things that she did. I am trying my best to see yours and Brokenblossems point however the way that some of the things people said tonight made me feel there is no excuse. I was left crying and shaking in the middle of the night because people were making light of the situation I am in. I think if your struggling that much you need to realise that this isn't the place to take it out on someone. If you are having a bad day then you need to tell us but you can't say hurtful things just because your hurting!
Spunky, I think I'm just gonna stop fighting. It's too much pain too little reward. I'll just follow the doctors orders until I can't take them anymore or he gives me an order I simply can't comply with. I hurt too much to fight a losing battle. I don't know why they choose opiates to demonize, guess they didn't want another Prohibition even though alcohol is more than three times the problem that opioids are. But for whatever reason, they are trying to stigmatize the one medication that actually has helped me. So I give up. Whatever happens, happens. Maybe if enough bodies pile up, they'll figure out it was a bad idea to make us look like criminals when all we are trying to do, is survive. I'm awake on and off right now, but without my meds I wouldn't get any sleep. And I'm so so tired....
I hear ya..I sleep an average 15hrs a week and medical persons don't seem to care... I am so angry at all the suffering we are put through and I think --where is our voice? Who is speaking for us? What do we say? Who do we say it to? How do we say it? That's how this began...Someone on a thread linked an article and the woman was explaining how she felt being treated the way we do...some guy comes on and says well that's a minor inconvenience tell it to the mother who lost her kid... Well, how is that our fault? Why should we suffer because her kid experimented or whatever? I'm willing to put into action what I believe in and I believe we do not deserve this! None of us! But it's going to take more than just me and if we can figure the best plan of action...I have to..I'm doing nothing but trying to get LEGAL HELP! Its scary when people tell you to make a trip to Detroit!
@Spunky 🤗 I know what you mean. I have a bad habit of talking before thinking and I am working on that in my personal life. I am also trying to not respond right away to give myself time to react different. ((Counselor try to teach me that)) but easier said then done plus not helpful for me at times because the person feels like I am just ignoring them .
We are all dam if we do and dam if we don't lol. 🤗🤗🤗🤗
Ya know Phoenix and Lola, you guys are right and I too have had enough if hurt feelings and feeling picked on and as said, we can't change anything. I am alone, in my pain, life and location...I get that..I had hoped for something better.. If you read, respond want to put words or intentions in my mouth knock yourselves out! I too hurt in so many ways you have no idea! I'm done..as someone said to me everytime we talk it's the same thing and Who Cares! I wish you all better days ahead..all my best
Spunky if you let us in we can be friends and support you in any way we can. Being alone and hurting in every way makes you defensive so you knock back the hand of friendship and support because you feel enough pain and don't want to be knocked back any more. I know words are just that words but it's all I can offer, if I lived close I'd be knocking down your door and make you put up with my "The glass is refillable" attitude and make sure it rubs off on you. Ask some of my family how annoying I can be with it.....and no the glass is not half full or half empty it's refillable, sometimes I imagine it's got a couple of shots in it that I can knock back to get me thro the tough times!!!!
Everyone gets to the point where no matter what they try everything is taken the wrong way, text can be read wrong trust me on that my youngest sister and I don't message each other much because of this so we have to actually talk otherwise we have a massive argument over what we thought each other has said then don't talk for months, the worst time was we didn't speak for nearly 2 years.
You know I'm here if you want to talk, private message or on here or not at all. All I can offer is my listening ear, my advice and tough love if I was closer I'd be able to offer more practical help which I know you need more so but I'm in the UK!!!
I say what I mean and mean what I say and the offer is open to whenever you want to talk to me in the mean time I'm sending you positive vibes and warm healing hugs XX
What sezzy has said is exactly right, We can be here for you if you let us. Things in the past might have been read the wrong way or took the wrong way. I'm sorry if I ever upset you I didn't intend to. I hope we can let go of what has happened and we can start again 🌼