I thought I would share this story, because I was shocked, really shocked about how some others view these meds.
Went to the hospital to see a friend of mine, she is abit older & has a son who is in his mid thirties, very well educated & so forth, he was also there at the time.
The lady in the next bed was recovering from surgery, looked like perhaps back or neck, alot of pain, crying, I felt so sorry for her. She looked also to be in her mid 30's. Anyway the doctor was releasing her & put her on oxy.
We were in another area for my friends recovery (pacemaker implant), my friends son went on & on about the oxy, such as the poor husband, she will probably act like a fruit (like stoned or something), get addicted, she may steal my friends bag on the way out of the room, ect..... Honestly, he made her sound like a criminal & drug addict & she was not even out of the hospital, like he was glad his mom & her were not going to be in the same room, she was being discharged & he over heard the doctor going over her instructions while trying to locate his mom.
Then he went on to say he thought they only gave that to patients with cancer & that it was the strongest drug there was, blah, blah, blah. He just kept bringing up the poor girl. who was so sweet, in a huge amount or pain, she could not open her eyes at one point & was so concerned about my friend who was her roommate.
Well I kind of lost it. I never realized people actually thought this way.
I told him he was very misinformed that I did not know why he had that impression but that was not how people acted on oxy. I told him that I was on it at one time, I sure did not ask to be put on it & I hated it, what it is like to be in that kind of pain where a drug like that was called for, I also told him I have met people who suffer from chronic back pain who have to take oxy, they do not have a choice, & of course there is stronger out there. & that he should feel alittle sorry for that poor women because she had no choice about whether to be in pain or not.
I told him it is not the drug doing this to people, it is people who misuse the drug & then people who struggle with god awful pain get labled because they have to take these meds in order to have a life. I made it as clear as I could that you do not get a choice when you are in that kind of pain & most people I know would love to be off it all.
I was shocked at what he believed about pain meds, if he believes this so do others, I am sure. I was so disappointed in his mislead assumption & very angry on the poor womens be half, who really watched out for his mom, who has alzteimers, she let us know if my friend was having problems or mis informed us.
After listening to him I have instructed my husband to not even discuss my meds in passing when people ask how I am doing. What a shame that people are so ill informed. Just thought I would share this with you all, it has really bothered me, I have said I prayer for the women & hope she improves.
Sammy
Oh, so right you are. And, one can thank the media for that. Article after article about Oxy and other drugs. Most are very ill informed.
To be honest, this is why I don't tell anyone about my condition or my meds. People just don't understand....So I avoid the subject all together. The only people that can fully relate are other PM patients like you all! Judge me for this all you want, but it's path I've chosen and it's worked very well. It also helps protect my children from being judged as well.
Maybe one day, people will truly understand PM, but I doubt it.
you go girl!! i am sooo proud of you for sticking up for someone you didnt even know but just "felt her pain' and spoke up to the idiot who seems to be extremely clueless. what an a**. you just advocated for a potential "victim' of someones ignorance. can you even imagine what this poor woman would have gone thru if you had not spoken up? at least he has SOME insight now. better than none at all. i am proud of you sammy. Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Hey Sammy: I couldn't agree more. Like Ex said, I never tell people that I take narcotics. Sure my family and friends know, but they understand and don't judge me because they know how much pain I have and have seen me in agony.
What is truly hard is that when I'm out in public, for the most part, I don't look any different. I don't use a cane (yet) or need a wheelchair, so people have no idea I have CP. I am eligible for a handicapped tag or plate for my car, but hesitate to get one, because I don't "look" handicapped.
My brother had a girlfriend a couple of years ago, who was a bit of a whack job. He told her that I had CP and that I had to take meds. We went out to dinner with them one night and she started asking me why I didn't drink. I explained that alcohol doesn't mix well with the medication I take. She looks at me across the table and says "Oh yeah, you must be buzzed all the time with all the drugs you take". A little bit shocked, I explained to her that I do not get a "buzz" from my meds and even with them I still have some pain, etc. and she says " Well, sometimes you've just got to suck it up" My brother told me after that he kept trying to kick her under the table, but realized after that he was kicking her purse! I know in the car on the way home he set her straight.
It's really so unfair, that so many people have such a negative view of us, when they don't have any idea what we live with every day. I'm just very grateful that my family and friends know me, love me and don't judge me. And it's a blessing that we have a place like this to share and be understood.
Sammy,
I am a very private person. I used to go to work with pnemonia and my cough was explained as allergy. For high fever Tylenol was available and nobody knew that I am so sick.
After my ordeal with fusion surgeries and PM care only one person knew that I am taking narco meds it was my girlfriend and her hubby who we grew up together with and remain friends with them till now. In a good times we meet each other for Friday's dinners at each other's houses.
I never discuss my problem with other people except people on this board.
About 8 month ago we attended a charity affair for breast cancer research. My girlfriend met her friend from work there and this lady talked about poor cancer patients who are on such strong meds (narco) and they still in pain. She also talked about people who take this meds just for pains and aches and only because they all drug addicts. This meds meant to be only for cancer patients. She said that she had appendicities surgery and did not need any PK, so if she could survive without it - anybody could.
She said that her step father is on Percocet ONLY because he had knee replacement and he claims he is in a lot of pain, but she believes he is just an addict if he can't take Advil or Tylenol.
My girlfriend agreed with her! She said that this is Dr's fault to prescribe this type medications left and right, many people don't need them but they like it because they get high on it.
I was so shocked. We got in a car and let her have it!
I asked her what does she know about pain, I asked how many people she knows who take this type meds because they want to get high? I was crying and was very upset about this conversation.
She was very apologetic saying that she did not know I will take it so personally since I am OK with meds. She said no reason to be so sensitive to what people have to say. She is not in my shoes and does not know how it feels.
And I decided never ever mention to anyone about taking PK. I believe that lucky people who really feel that appendicities surgery may be compared to any spinal surgery have no idea what pain is. They are judgemental only because they have no clue what they are talking about.
I can't blame them for being so clueless; good for them they don't know what means CP and how to leave with it. But to blame everybody who is on PK - that is what bothers me. We don't have to be responsible for those who became and addict, but unfortunatelly it happens.
We can't change people's opinion about this matter, but I am glad we found each other on this board where we can talk, we can share and everybody understands and feels for each other.
God Bless you all!
I've been having a crappy time pain-wise lately. Yesterday I mentioned to my brother's wife(who I'm very close with) that my meds don't seem to be working now and it looks like my next step is methadone. I don't want to be falling asleep all the time. I love to read and don't want to give up my quiet time everyday.
Anyway, she says, "oh, you don't want to go there. You'll just get addicted. That's just something that Heroin addicts get addicted to...it's just as bad as Heroin." I was shocked into silence. My sister in law is very open minded and I've talked to her about pain management and such. She also works in the emergency room of a nearby hospital. Maybe this is what has shaped her opinion. I'm sure she's seen her share of drug seekers.
It's just sooooo frustrating. We can't tell anyone or talk to anyone about our treatment. That's why this board means so much to me. You guys are the only one's who understand. Thanks for listening!~Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease
I made a mistake quite awhile ago by asking some friends to drive me to the pain clinic for an epidural. Of course the meds that I'm on became a topic of conversation. Now it's like everybody knows what pills I take. Then one Sunday I had to be at church early and forgot to take my meds. Needless to say I had to leave early and was in a whole bunch of pain. Of course I had to explain to the people around me in the meeting what the problem was. Then because I'm stupid I've told a couple of folks about oxy. Now everybody in church knows I'm on this stuff. I've tried to explain that I don't get buzzed just real tired and they choose not to understand. Their problem not mine!
Fred
I simply don't know where to start--except that I agree and accept these posts!
I am so angry about the initial post's subject that I can only say, "Amen" to ALL of those who posted.
I must include the fact that the 4 PM doctors I visited were the most useless so-called physicians possible! My Internist (deserving the capitalized letter) is one of the best doctors in every way. She is NOT a pain doctor, but she has NO problem Rx'ing my pain medications--Duragesic, Actiq, Dilaudid, Fioricet, and Fioricet w/Codeine. I have Systemic Lupus and the Lupus Anticoagulant--PAINFUL to put it lightly. I take other medications, but they are not pain-related. By the way, she is not a pill pusher. I was already RX'd these medications before my previous doctor retired.
I'm exhauted, but I must express something. One of the infamous losers of a Pain Doctor--back when I was having truly severe migraine headaches--he placed Q-tips (twice the size of normal) in each nostril. I felt them in the back of my throat. Still, however, I was expecting results as he placed a syringe's worth of lidocaine in each nostril. When the "appropriate" time had passed, there was not one ounce of relief. He said, "All of your meninges should be saturated, so the pain should be gone." I told him the pain was still as intense. He informed me that there was nothing more he could do for me. SINCE HE PRACTICALLY PERFORMED NO SERVICE, HE DID NOT GET PAID THE $500 HE CHARGE!!
If you have read this far...This guy is now chief of staff at our local hospital. Please know I'm joking at my next comment: I would rather impale myself on something lethal from my roof than go to this particular hospital!
Finally...I have other comments, but I'll spare you for now!
Sincerely,
Jon (Conductor)
P.S. It is exceptionally wise to refrain from discussing your medications, which was already alluded!!!
I Then one Sunday I had to be at church early and forgot to take my meds. Needless to say I had to leave early and was in a whole bunch of pain. Of course I had to explain to the people around me in the meeting what the problem was. Then because I'm stupid I've told a couple of folks about oxy. Now everybody in church knows I'm on this stuff. I've tried to explain that I don't get buzzed just real tired and they choose not to understand.
It is truly unbelievable. You would think that people who attend church would be more understanding and open minded but this is not usually the case. I guess they should really ask themselves WWJD? You know I always say that is so un"christian" like.
Yes, it is imperative that we do not discuss our medications with others. You would think that you could trust others who are in the medical field and they would be more understanding but obviously this is not the case. It can really be hurtful and get you down and that is why we need so much support and understanding.
One of the reasons that I am so upfront and open and tell alot of my business is so that people can see that there are people out there with "a lot" of issues that end up taking pain meds. Even a recovering addict is perfectably capable of taking narcotic medications, and not get "high" from them or "addicted" to them. The reason that so many of us, including me, started doing illegal drugs was because I could not "cope" with the pain anymore, and I mean the physical pain. No one knows what it is like to walk in someone else's shoes. I wish that I could go back and undo things but I can not and I have to live with my choices. I try to help as many people as possible because it really helps me and I feel like it is now my "job" on this earth to do it. It really "humbles" me be completely honest, open, and caring and help someone who needs my help and understanding. Dang, guys I am crying just typing this, see what I mean about honesty. I try to be honest, open minded, and willing to do whatever possible to stay "clean" and to also help others in need.
I have to realize that I am completely powerless over what someone else thinks, feels, and does. It may not be easy to take someone else's opinion or thoughts but when I do realize that I am completely powerless over this other person then it is a big relief. Just my two cents everyone.
cmp, You hit the nail right on the head, because we are functioning people tend to look at us like "well you look fine to me". Yes we do because we take meds to be able to function. I hate to say this but even my family does not get it at times. When I hit a bump in the road & have a bad day it reminds them & I get so angry at times, why does it take that to happen.
I just felt the need to share that story, it bothers me that there is such ignorance out there. To have to rely on a drug to have any quality of life is tough enough. I used to care about what others thought slowly I am learning that I should not have to suffer for people to realize that I take these meds for a reason.
My brother in law was here one morning, my sister & him had spent the night, he was shocked how I was in the morning. I could barely move my arm to get it in the sling & out of the blue I started gagging, the pain can spike in a matter of minutes in the morning before the med kicks in & that can make me just feel sick, he jumped up to offer assitance right away, well he had made a comment the night before about how he would never take any meds he would just suffer through it. After that I think he got the picture. I could tell he regretted what he said, but it took him to witness that.
My point in telling the gentleman about myself having to take the oxy in the past was that he had dealt with me did I seem like a nut case? I don't get high off my meds, what I get is relief & along with some nasty side effects, I sure don't enjoy feeling tired & spending alot more time on the pot staring at my bathroom walls that are in dire need of a paint job. Some people have no choice. I know there are a few people out there that know about my problem & surgery & wonder, because I will have good days & bad days, let them wonder, shame on them for passing judgement. Anyone who knows me well knows that I do what I have to do, & those are the people who matter.
This experiance opened my eyes, I realize these drugs have a stigma attatched to them but that truely blew me away. What the heck, did he expect that poor girl to lay there & suffer.
You have heard it many times "Walk a mile in my shoes". If he were in her shoes he would take the oxy.
What do we expect when even healthcare providers can show ignorance, as what pointed out on this thread.
Brian you just stay the way you are & don't ever change, you are a blessing to many! We need more people like you out there. you are meant to help others & as far as I can tell you do a great job.
I just hope by posting this experiance others get to see how some people (I would bet awhole lot of people) view these medications. Sammy meds. Sammy
Last edited by sammyo1; 04-05-2008 at 03:52 AM.
Reason: pain was meant to be paint
You would think that people who attend church would be more understanding and open minded but this is not usually the case. I guess they should really ask themselves WWJD? You know I always say that is so un"christian" like.
It's been my experience that in many cases, these loyal "church" people are often the worst ones in terms of gossip, holier than thou attitude, judgmental, & etc. In fact, there is a preacher who lives down the street and he is always very nice to everyone, but his wife is as judgmental as they come....She thumbs her nose up at anyone in the neighborhood who she feels doesn't walk the straight and narrow....Won't even talk to them and looks the other way. Very pitiful.........
Again, this is why I think the best advice is to keep all your information private. Not only could it save your life in terms of someone trying to steal your meds, but it makes your life that much easier overall in terms of not having to always justify things. Chronic PM patients have a tough enough life already, we don't need all this other crap on top of things.
There are good and bad people everywhere, in church, as well as "pagans" who don't attend church, like me. I agree that there seem to be many judgmental people who describe themselves as Christians, but I believe we notice them more because we hold them to a higher standard, i.e. they shouldn't do that because they are God-fearing folks. Every type of person can act that way, and I've witnessed it myself. My physical condition precludes me from attending church, but I still believe and like to think I am not too judgmental. Ok, end of sermon.
Like Cmpgirl, I usually "look" normal. I have for years. Even members of my family would tell me I just needed to relax when my chronic insomnia started. (Inability to relax was not the problem, trust me.) They didn't (and still don't) understand why medications don't work for me, since they knock them out. When I was granted SS disability status, I had to keep it very quiet because I don't look disabled and people I have known for a long time would remark on how normal I looked. Why can't you just suck it up and work, somebody asked me once.
I come from a generation that was taught to suck it up. I have done that for my entire 5 decades of life. I tried working while in pain, not sleeping, etc., until I started making so many mistakes that it made working impossible. I never want to impose on anyone, and it used to be that I never challenged my doctors. Surely, if my doctor said something, it must be right. After worsening for the last 15 years, I have definitely learned that the medical profession is full of arrogant, uncaring, incompetent, overpaid....well, you get the point. I have found an internist who cares, is willing to try things, and follows up to make sure I'm doing okay. Most of the specialists I've seen (sleep doctors, orthopedic surgeons, rheumotologists, etc.) seem to be the ones most lacking. But after years of declining health, I got mad at these doctors and kicked them to the curb. It is so time-consuming, expensive and hard on your health to have to weed them out and find the good ones. Even now, I am dealing with an orthopedic surgeon who I am beginning to believe fits into that category of "too busy to care" or something along that line.
This is the first place where I feel understood, empathized with, concerned for, etc. It is a place of electronic friendship and comraderie. It has been such a Godsend for me, I can hardly express it in words. But it is an added burden, for many of us, to have to keep our ailments and treatments secret. It's bad enough that we suffer in physical pain. But to have to battle incompetent and uncaring doctors, non-comprehending friends and family, and judgmental people, well, it sometimes makes it all just unbearable.
Sorry for the rant--I'm so new to the board that it's an enlightening experience for me to vent here. I'm sure I'll get better (and shorter in replies) as I get things off my chest.
TM,
I can totally relate to the invisible part of your story...my pain is invisible.
When my meds are working I can bite the bullet and smile and no one will be the wiser. This just makes it harder when I'm having a bad day or dealing with tolerance issues like I am now. No one understands my pain because apparently no one on this planet has ever had what I have. That's what the doctors say.
I don't want people to know what meds I take so it's a delicate dance around my pain. It sucks!
Welcome to the boards and thanks for letting me vent.~Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease
Where on earth did we develop the idea that pain relief/pain medicine is wrong??!! Does it make sense to suffer needlessly? Yes...I guess there will always be someone to misuse or abuse the medications, but I don't find that to be a logical reason that forces me to endure needless pain and suffering.
We are in a terribly vicious cycle. Moldova mentioned how ignorant our friends can be when it comes to pain medication--again...I don't understand why certain people believe pain treatment is wrong, and that we must suffer. For goodness' sake: We have the desperate need to advocate the appropriateness of legitimate relief from suffering. But, as both Executor and TexMom85 point out--there are specific and intense reasons for secrecy and privacy. For instance, Executor made the sad and increasingly persuasive point of Rx theft (often by family members or friends). TexMom85 also expressed the need for secrecy because many people--Church-goers and/or "pagans"--are exceptionally judgmental on the usage of opiates/opioids. SO, WE'RE STUCK WITH THE CONFLICT OF PRIVACY VERSUS THE NEED FOR EDUCATION CONCERNING PAIN MANAGEMENT!! WHAT A TASK WE FACE!
By the way...TexMom85, I love where you are located: "State of uncertainty"! That sums it up, doesn't it?
Brian33, Sammy paid you an absolutely true compliment. We need your perspective and experience here, and I am always--and I do mean ALWAYS--intrigued by your posts. Keep 'em coming!
It would be rude of me to fail in supporting the support offered by the other supporters: feelbad (Marcia), cmpgirl (you preach it!), trowftd3 (Mush), Arthr Itis (Fred and his convincing argument for serious discretion), and 123dietdrpepper!
Sammy (Sammyo1)...See what you started?! Please, please know I am just kidding with you! However, you initiated one of the most important discussions/threads on the Pain Management Message Board. It is very difficult to educate people about a subject that most of us prefer to keep private (for all of the obvious reasons). Round and round we go. We must continue developing an improved manner teaching people about proper Pain Management--especially those in the medical field (doctors, nurses, and others that make PM decisions).
Sincere thanks for allowing me to vent,
Jon (Conductor)
P.S. I am FAR from perfect in my typing and composing of posts. However, I have noticed improvements in our Pain Board posts! We have gotten much better at correctly using "etc." for "et cetera". The common error is spelling the initials incorrectly: "ect." As well, I'm old-fashioned and like the "e" dropped from the word "judgmental". It has become common to spell it "judgemental". Either way it is spelled, I tend to be that way. Finally, the next word has two syllables...real-tor...NOT...real-a-tor. And, the other word is jew-el-ry...NOT...jew-le-ry. I don't know why this all annoys me, but it does. My Mom (I always capitalize "Mom") is a retired English teacher.
Conducter, Am I correct in saying that you are alittle angry?
I sure did not wish to tell anyone that I was on oxy at one time, but the more the gentleman went on & on the more angry I became. People need to realize it is not the drugs, it is the people who abuse them.
I turned on the news just last week & there was a man arrested for selling narcotic drugs out of his home, they showed bags & bags of pills & listed some of the names of the drugs. The first thing I thought was where on earth did you get all those meds? Got to wonder when most of us have to beg & live in fear of being left in pain. I did think how ironic after the experiance at the hospital & telling the gentleman "I don't get high off my medication" something like this pops up on the evening news. No wonder people have misconceptions.
My neighbors slowly watched my life change, I went to someone who was out working everyday to someone they rarely seen at all, when my husband explained about my medical problem they understood why they did not see me around. Of course while he was talking to them (they are good friends with my husband) he did let it slip that I am on pain meds, I was furious. Took me awhile to get over it.
I do not want others to know about my meds but after what I experianced in the hospital I feel the need to be an advocate if I face a situation such as that again. I have come to the conclusion that people just do not get it. If you are lucky enough to take the meds. & get control enough to do normal activities then people observe & think "well you look normal to me, don't look like you are in pain", such as I stated in my earlier post about my brother in law, I appeared to be fine the night before & I know he was shocked the next morning. That is why we take the medication to function as "normal" as we possably can. It is not normal to not be able to put on your coat without assitance, make your own meals, to bend down & tie your shoes, to clean your own house & so on... We take these medications to be able to do our activities of daily living as much as we can in the least amount of pain as possable. We deserve to live as pain free as we can & we do what it takes to be able to do that. It is not up to anyone else to cast judgement & jump to conclusions. That shows ones ignorance to make statements about medications they no nothing about. Like alchohol, just because it is there in ones home does not mean they are an alchoholic, whether you abuse it or not is up to you. Unlike alchohol we have no choice with our pain meds, but because we are in possesion of them & take them does not mean we abuse them & are drug addicts.
I have seen a change in some peoples attitudes with me since finding out I am on pain meds. I should not have to defend myself for wanting to live as pain free as I can. People such as us do not have a choice. I have told more then one person, as I come from a huge family as does my family, I do not enjoy vomiting, do you? Would you like someone else helping you dress every day? & so on.. It was hard for me to adjust to taking pain meds, & I suffered because of my foolishness of trying to take the least amount. Fearful of addiction & to please others, It got me no where. I still have hope of getting rid of some of this pain, I don't think I will ever be painfree again but no matter what happens in the future I will always be understanding of those who live in CP & educate others if the occasion calls for it.
Conducter I will endeaver to watch my spelling & grammer, but I must warn you for some reason I make more mistakes then ever. I have two teachers in the family, one history, one english, thank god they do not see my posts.
As always thank you all for your responses, excellant points you have all made. Sammy
I have seen a change in some peoples attitudes with me since finding out I am on pain meds. I should not have to defend myself for wanting to live as pain free as I can.
Great point.....And, this is the crux of the issue, IMO. As the saying goes, "it is what it is".....Unfortunately, no matter how much we discuss how we shouldn't have to defend ourselves, or justify our medical care, the reality of the matter is that healthy people by and large just don't understand....And, never will.
So, in the decision tree model of life, that leaves us with two alternatives......(1) Be honest and more than likely endure what many have already poetically written, or (2) Keep quiet and thus, avoid the topic altogether. For me, I have chosen the second path. My pain and suffering is enough for me to handle....I don't need people judging me and talking about my condition and then have to worry about justifying it over and over....Especially since I'm not working and all the rhetoric that follows. I'm tired of hearing people say "I'm paying for such and such to not work"....I certainly don't need friends and neighbors saying that about me. And, I don't need my meds stolen by someone who happens to hear down the line that I'm on narcotics...Especially, when my PM contract states that they won't be replaced under any condition. After all, one could be seriously injured during the event.
I guess everyone has to do what they think is best, and for me and my family, it is the second option. Good luck to all, and this has been a good discussion thread by getting people's feeling "out there."
You caught me! I do get angry sometimes about this whole pain thing! As Executor, I generally do not talk about my condition. This is my only outlet. So, I thank you all for letting me rant. Does anyone know a good place to buy extra keyboards? I tend to type hard, and it scares my family!
I have Systemic Lupus and the Lupus Anticoagulant--which isn't visible on me. I don't get rashes or anything, and I'm thankful for that. But, I don't think my family members understand the reason for pain medicine. You stated it very well in your most recent post. In fact, the subject matter of this thread was an excellent choice you made. It gave us all a chance to discuss some important issues. So, thank you, Sammy.
Ex, we need each other, don't we? There are so many people who posted on this particular thread that I want to thank. At the same time, I don't want to sound trite about it. This has been great for me.
Along with the invisible pain we have the fact that after awhile our family members(and friends, co workers etc) expect our pain to go away.
My mother in law said recently, "Oh, are you having that lung problem again?"
I had to explain to her that it was not 'again' but 'still'. She had a hard time wrapping her mind around the fact that it hurts 24/7. I'm sure that part of this is because she doesn't know I take pain meds(her daughter has abused them for years so don't want anyone on that side of the family to know) and I don't appear to be in pain every day.
AAARGH! It's so frustrating keeping everything in it's place!~Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease
I try to be honest, open minded, and willing to do whatever possible to stay "clean" and to also help others in need.
