when will we quit being blamed for our pain

[Mark N]

We have discussed the way that TV, movies, those without pain, our partners, and society blames us for our pain and blames our meds as the problem. My wife took another shot at me yesterday morning because the pup needed to go outside for his constitutional and got a couple of barks in at 6:30am. She ignored the fact that I couldn't sleep because of my pain and went to the store to get several things we needed including cat litter. I took the pup with me to the store [he waits in the SUV and he loves to take rides] right after he came back in the house. The short story is I got blamed for being inconsiderate for letting him out and the little bit of noise I make during the night while it is okay for her to go to the bathroom during the night along with going to the kitchen and getting something to eat. The worse part was being ridiculed for my disability and I should accomodate everyone else because they have to work.

We are attacked by the press about the drug problems others have. Shows and movies show chronic pains addicted to their meds and the people around us think we should be able to do more than we do. I fight back when this happens because I am not going to take it lying [boy how I would love to lay down in a bed for hours of deep sleep] down without responding. As good a person my wife is, she seems to think anything I say is mean and yet she picks out the things that others can't help [ie my daughter's boyfriend is really nice but not very smart and made comments to me and my son about his lack of intelligence. My son told her how mean that was even when the BF wasn't around but she can't see the mean things she says even when I try and avoid doing that myself].

We need a good promotional company to blitz the country with advertisements to counter all the bad articles, "studies", the shows and movies, along with our society. I wonder if we could get one to do it for pro bono :D . If drug abuse is a problem then lets get society to blame the addicts and not those of us that use our meds correctly. If shows and movies want to have chronic pain people as characters then they have to portray us the right way. Those that fake our condition to try and get meds and disability should have a discogram once a week for one month.

The easiest way to solve all these problems is to have people live in our shoes for two weeks [they would get the idea quicker than that but they should suffer for awhile so they don't forget]. The first week they get to use our meds and see how much they help us then one week without meds overcoming their pain by thinking through it:eek: .

I know there is no good way to change this but it felt good to write it out and to think about how much better we would be treated.

[Kathi49]

Mark,

It's sad that your wife has to take "pot shots" at you. Personally, and I am just going to say it, I would sit her down and really let her know how you feel about this. If a fight ensues, so what?! Okay, okay, so I am mad after having read this. It is just that how much longer can you go on and take what I term "verbal abuse"? Even IF she is frustrated and as you say a nice person, it still does not give her a right to ridicule you or anyone else. Trust me, I have been through this when my husband thought I was "faking" it. That is until we had a rip-roaring fight! I didn't care anymore. I was tired of fighting the pain and have him say I could do this that or the other. Yes, I risked him walking right out on the door. But darn it, there is only so much a person can tolerate. I guess he finally got the message after I was rushed to the ER more than once. Since then he has been extremely supportive. I know he is stressed out about work, life, whatever...but he does do his best to help me out. And, well, I guess a good kick in the pants didn't hurt either. But like I said, I took a big risk when I let it out all out...both barrels!

As for the TV shows, I have never watched "House" so I can't really say too much. However, if I watched a show where somebody was taking Vicodin right and left...so what? I would probably laugh! It is just a show after all but I know what you guys are all saying. It is NOT funny to those that are in incredible pain and to portray it all as a big joke is not right. But, knowing me, again, I would laugh and probably think...wish it were me! I mean I wish I could take Vicodin as much as that guy supposedly does. :D

You are right about doing without meds for one week though. I have been asked by others...repeatedly...how come it is you can't do this, that, or go somewhere. So, I explain over and over again. It is like anything else I guess, you just have to educate them. Now, instead of insisting I go somewhere or do something they usually ask, "Can you?" Or, "How are you feeling today?" It took a lot of time to spell it all out to them simply because they were not at all familiar with spine problems.

Anyway, hang in there. I hope I didn't offend you. But every time I read something like this, I get a little fired up. :eek:

[BrokenBladder]

Mark I do understand where you're coming from with your wife. I went through it with my first husband and it was one of the most difficult things I had to face. When our spouse stoops to the level of taking shots at us just because they don't get it. Let me say too that my first husband was/is a nice man. We're friends now, but he will not hesitate to tell me he just couldn't live with it (pain/disease). He just dosen't have the mental capacity to have that much feeling for someone else's pain and suffering. Why? Its simple because he's never had it for extended period himself.
As far as the TV shows, movies, and things like that I just don't watch them if they offend me. Our basic society thinks they're so high and mighty when the real truth is people are doing bad things behind closed doors AND then they want to say that we're addicts!!!! It's disgusting but most people have to find something that is wrong with everyone else. As they say.....watch out for throwing those rocks when you live in a glass house!!! What makes this so bad is that we simply can't move or live a decent life without our meds. Society thinks we're getting "high" by taking our meds, HA!!, I say unlike most of them I never feel a "high" because I never drink or do receational drugs so everything I do take goes straight to help with my pain.
Maybe you and I should offer to do a show together and get the real truth out there!! Oops wait that wouldn't help the T.V's ratings now would it?

[juniee]

I too went off before the new year when I was put on Cymbalta and was dropping off the sleep while sitting/standing/driving...and heard words behind by back like intervention, rehab, etc....I old them all loudly to go right ahead and when they came away from he docs with a little info that what I need along with my meds is support, understanding....and then I shot out all the ones that mattered the chronic pain letter and links to my disorder and this time I was very nasty and said reading these articles would be a good start!!! Not sure how much I got through but at least I felt much better!

[Jo6]

Lisa, that may be just the thing to do, a show that portrayes the real us. People in general would think it all fiction, we would get rich because everybody "loved" the sick show.

I have been around people that would make gross jokes about the chronic painer;s that can not walk with their back straight. Me being one of those. So much suffering I read here and it hurts me because it's not likely any of us will be "cured!!

I had no idea what House was until someone explained it. I seldom watch TV, I can't stand or sit long enough to understand what its all about. The History channel, Discovery , a few others along that line is about it. I am in mourning because Baseball season is over until March!! I can change positions long enouth to get most of one.:D

I don't want anybody to feel sorry for me, just give us a little credit. Most that come here have very painful issues.

I have to chose what I am willing to suffer for before I go any place. A few things are worth suffering for and I try to choose carefully because I know what will happen when I get home.

I will shut up now because you all are very ill too and you don't need to hear any more grumbling.

Mark, I understand what you are saying. I just wish I could help all of you, make everybody feel better.

Yes, give us credit for trying to keep our suffering on to our famlies. Sometimes it is best to let our families know how bad we are and please walk a mile in our shoes!! ((((hugs to all)))) Julia

[GardeniaGirl]

I had to chime in on this one.

First of all, I am sorry to hear about your wife's comments, Mark. I tend to agree with Kathi - wonder if you can confront her on this and resolve it once and for all?

I am not married or dating someone seriously right now, but I can talk about my siblings.

Brother #1:
5 years younger than me. I stopped trying to get support from him after having him actually yell and swear at me more than once (on the phone) when I was talking to him about how severe my pain was and how depressed I was feeling. He basically told me to "get over it." No empathy. Then, when I got upset that he wasn't being understanding, he got even more angry!

Brother #2:
3 years younger than me. I could not attend his wedding due to the severe pain I was in and the fact that his wedding was in Mexico and I am on 3 different immunosuppressant medications. He became **enraged** at me for not attending his wedding. When we finally spoke on the phone about it, he interrogated me like he was a prosecuting attorney and I was charged with a crime for over an hour. He was so wrapped up in himself about HIS wedding that he literally would not even listen to any factual information I told him about my health. He has shown me absolutely no sympathy, no empathy, no concern even though I have been sick since 1997.

---

If someone had asked me 10 years ago that this is the way my brothers would treat me, I would have never believed it in a million years.

I am a very caring and empathic person, so to see how totally lacking my brothers are in this realm has been extremely hurtful and disappointing to me, especially since they are my only siblings.

[waggytalk]

yeap. its amazing how some react.

My wife does the same. I was having a bad day. in a lot of pain so she stayed home from work (we have 2 young kids) since nobody could take them for the day.

so she starts going on how we need to clean, shovel the driveway and wants me to take the kids for her to take a nap and a shower.

it pissed me off. Here i was in a lot of pain. bad enough i could barely walk. bad enough i ask her to stay home. and then she wants me to do crap? pfft. we had it out. but i don't think she really understands the amount of pain i am in. I can ignore most of it. but there are days holding my 5 month old son for more then 5 minutes is torture.

I would like to be able to switch bodies with people for one day. they don't even need to do it on a bad day. then maybe then they would understand.

My sisters don't understand either. They think i'm BS'ing or blowing out of perportion. Though my father understands but i think its more the fact that his wife worked in the medical field for years. Also her mother and uncle have RA.

My mother also understands. but she has RA so she is in the same boat.

[Mark N]

Everyone, I have had it out with here many times and I know that it isn't a good environment sometimes but I will continue to fight for myself and for the woman I love. She has her on issues to deal with and the biggest problem is she will not see what she is doing and blaming me for all the problems.

I really wanted to let off some steam about all the things going on in our society that are going to cost us our choice of meds just like is going on in Washington. I just let my frustration with my wife slip in. I am concerned that too many of us don't understand about letting the camel stick its nose under the tent [gov't intervention] and before we know it the camel takes the tent over. When we allow our gov't to pass laws that protects us from ourselves [I could list a lot of different laws like seatbelts even though I always use them because it is much safer than not using them] then we open up ourselves for others to limit our medications for "our own" good. I hope the Washington policy doesn't spread and other states put a stop to this kind of legislation.

[ErinENj]

Members of my family tell me, on a regular basis, that I'm an addict and that if I just stopped taking those horrible medications (and go to my aunt's chiropractor who, after all, completely fixed her back when she had the exact same problem...she had a nice little herniated disk...just because I have 2, and at both levels I have no disk matter left, it's inconsequential) I'd be perfectly fine. I love how my aunt told me that I made the biggest mistake having surgery to fix this, especially since her herniations were healed by the chiro, so I should have just gone to him. One small detail, she was telling me this after my 2nd surgery, and after she never visited me in the hospital, any of the 3 times I'd been admitted, and didn't bother to even call me to tell me while I was there, but of course, she's the expert and I should have gone running to her for advice. :rolleyes: Ugh!! My grandmother is the one who keeps telling me that these medications are what are causing my problems. If I would just get off of those darn medications, I'd be perfectly fine. She knows all about it of course, since she never even took novocaine at the dentist, and now that she has spinal stenosis and a herniated disk, she knows all about this pain. She doesn't get that my problems are totally different from her's. I'd love to have her problems. That way I could start over.

My friends are okay. They trust my judgement and want me to be on my meds if they help me. But I've definately lost a bunch of them because they just can't deal with this situation. One of them, who was supposed to be one of my best friends and so close to me, etc, completely ran out of my life as soon as I was hospitalized the first time. And it hurt, a lot. And there were other people who I know only talked to me in hopes that they would get their hands on my meds. So when they didn't, they dissapeared too. And other's just gradually faded out of my life, and occassionally will pop back up, but it's never the same.

This situation is a nightmare enough, without all of these other people adding things to it. The public doesn't understand. And they never will, until someone big and famous gets struck by all this, and then they may care for a day or two, and then it's back to work as usual.

You know, I hope that I have the ability when I get out in the world to set some of this right. I'm a journalist because I want to change things. I want to be the peoples' voices, to stand up for them when the things are wrong, when the government is doing something wrong. That's why we're called the 4th institute of the government. And I hope I get the chance to change things about the way people see us as a group in this society. Not as a group of drug addicts and drug seekers, but as people who work amazingly hard every day and night to be able to live their lives in the best way posisble, and so at the end of the week they can say to themselves, "I was a productive citizen. I lived a decent life this week and I contributed something to this world, no matter how small it was." And I want to be able to say that to myself in good conscience.

There was nothing better than when I was able to make a difference in the disabled students at my school. There's no better feeling. I've never been prouder of myself in my entire life. I wrote an article. That's all I did, but that made a difference. At my school, there was only 1 handicap spot in the commuter parking lot on my side of campus, and it was as far away from the building I spend the majority of my time in as it could get. So I had to park in the teacher's lot that's right next to the building, but doing so was risking a very expensive parking ticket. They're usually full because there are 3 handicap professors who refuse to park in the lot reserved for them that has about 7 spots, all of which are empty every day, and are the same distance away from the building as the other ones. And they refuse to park in the regular spots next to the handi spots, even though they can without worrying about a ticket. While me, I can park in the handi spots without worrying too much about a ticket, but parking next to them is nervewracking because they can ticket me if they want. SO, there were 2 of us trying to get these spots, so if there was one empty, and I wasn't there at the right time, this other student got it and I was stuck parking next to them. Another student wrote an editorial article about the lack of handi spots in the lot on the other side of campus, so I took the opportunity and I wrote an editorial myself, which ran in the last paper of last (school) year. I basically told the school that they were breaking the law by not having the legal proportion of handi spots in the commuter lot, and that the communications building wasn't handi accessible due to parking. My friend was down there for finals (I only had one class last spring, so I didn't have any finals) and she called me up one day and told me I had won. Of course, I asked her what I'd won, since I never win anything. They'd added 2 more handi spots to the commuter lot. Unfortunately, it wasn't a complete victory, because they had added them across the lot from where I needed them, but they had listened. And I had brought that to their attention. I can confidently say that without my article, those spots would never have been put in. And now, as I see other students parking in them, I feel a great sense of pride about my writing and my ability to change the things I see as wrong in the world. There's no feeling in the world like it. I've never been that proud of something I'd done. And still, I get this warm fuzzy feeling whenever I think about it. It really solidified my career path and aspirations.

I hope that one day I can do the same for us as members of society as a whole. I hope that some day I can show the public that we are people and are productive members of society whose value should never be underestimated. I want to be able to break down those stereotypes that seem to come along whenever painkillers and their use are mentioned. I want to show people what it's like to live a day, week, month, year, or even a lifetime in our shoes, what we go through, what we have to deal with, and what gives us the strength to get through today and still have the hope that tommorow will be better.

And I hope that when I do that, you all know that it's because of all of you that I am able to and that you know that it's your help and support that has given me the strength to get to the point where others will listen to my voice, and in turn, all of your voices. (I know that sounds really cheesy, but I mean it. It's because of all of you that I'll get to that point, and I want you all to know how much it means to me to have such a great group of people in my life. )

[Mark N]

Erin, good job with the editorial and I hope that you are able to work as a reporter and start to change the perspectives on our lives. I worked for years with horrible pain as a teacher and a football coach. I helped alot of lives and still keep in contact with several of my former players. I worked because I loved it and wish I could still do it but finally my pain and meds overwhelmed me. If anyone could see in my heart and know how much was taken from me when I couldn't work again then they would understand how devastating our condition is. I was able to overcome my pain for years and coach teams to championships making them better than they thought they could be.

Everyon seems to know what is best for us because they have had a bad back too. The problem is tht we don't have bad backs but a spinal disease. I don't even use the term "bad back"because it misinforms people too much. Unfortunately, most of us have to go through what others do to truly understand what it is like. I remember thinking that handicapped people needed extra help like redesigning sidewalks, doors , etc. But I thought they were being too picky because in our city they we complaining about the ramps having a 2" lip. Folowing my lubar fusion I found out when I had to use a walker to get around painfully why it was so important. I would shuffle up to a sidewalk and stop and wonder how I could get up over the lip. I now know why it is so important for some people to have a some incline inour sidewalks.

I hope you are able to do the job you dream of and change the way things are for us in this society.

[ErinENj]

Thanks Mark! I'm sorry to hear that you're unable to at least participate with your old team in some way. Do you go to some of the games, or is it too hard both physically and emotionally?

I completely understand wondering why people were making such a fuss over those little details about accessibility, but now being in their position and making a fuss myself. We don't have sidewalks around here, but our roads are horrid. I used to ask why so much money was being spent in our area to upgrade the roads, where there wasn't a whole lot wrong with them. But now, I'm wondering why there isn't more money being spent on it! I was on the way home from the NJ Devils vs NY Rangers game last Tuesday night, and I was amazed at how the roads are completely not 'back-problem friendly.' I actually said something to my dad about it, and he told me that he'd tell our mayor that when they go around on their yearly road-check (they drive around on all of the roads in town to see which ones are the worst and absolutely in need of repair) they need to take someone who has a bad back, maybe even me. I'd be able to go blindfolded and tell them what road they're on just by how painful it is! We get a lot of potholes because our weather tends to be somewhat unpredictable here in central NJ, but they never have the money to fix all of them, or if they do, it creates a lump in the road because they don't do it right. Also, I've noticed at school how inaccesible the majority of the buildings are. At the majority of the buildings that have the neccessary ramps, they're at such an angle that it's rough for me to get up them, so I couldn't imagine what someone would have to go through if they were in a wheelchair. There was a blind student in one of my buildings last semester, and I regularly had to point him to the right classroom or help him find the ramp. I don't understand how he didn't have someone to help him get from one class to the next. He had a guide dog, but a guide dog can't read numbers.

I just hope that some day I can make a difference in this world, even if it's only for one person. I hope that my editorial and the new spaces have helped a few people (I'm sure it has because all of the new spots and the original one were full when I got out of my 1pm class), so I think that makes the story successful. Even if I got someone thinking about what it must be like to try to go to school in the position I am in, that's enough for me. These little changes, even if they're tiny little realizations in a reader's mind that there are people who have to fight to get to school, make all of the effort I put into my writing and my writing classes to try and turn into a talented reporter completely worth it a million times over.

[Mark N]

Erin, I am physically unable to get out of the house for much more that 30 min - 1 hour each day so there is no connection I can keep with coaching. I do get to watch one of my former offensive lineman compete in the NFL combine this year. I was able to see parts of the Hula bowl and hopefully can watch the senior Bowl to see him play.

It is just human nature to not truly understand someone's situation unless you have been through it your self. I was sympathic to the handicapped before my fusion but until I had to get around with a walker I didn't really know how much a problem they faced. Just remember to to research much more than today's journalist seem to do before you write an article. I hope you ave a good career and have the impact you dream of in our society.

[Bobbi]

If we permit others to treat us or respond to us as their "dormat," then that's something we enable.

If we don't facilitate that "treatment," it ceases. Our spines may not be in good condition, but we can retain a backbone.

I suppose I'm one of those whom others have looked at with "why is she using that space?" I guess they get it when they see my wheelchair.

I've heard all types of advice - from trying this and that touted as a cure-all. Problem is: Most of it comes from people who know not how it feels to have the same spinal condition(s). Why don't they just hand me some bamboo? It'll fit right in with the description of "bamboo spine" (Ankylosing Spondylitis).

I think - after years of listening to people: Some is not borderline abuse; it is emotional and verbal abuse. Anyone seeks to inflict any form of abuse and I am outta that situation so fast. I don't have time to vent about it; it's an energy drain if it persists and life is just too darn short.

A "commitment" is a two-way process (entailing emotions, etc.). It doesn't work unilaterally. I'd never permit another to put me down just to make oneself feel better.

The abuse is at the core of domestic violence.

That said, I've said what I think and with honesty.

Been there, done that, and ain't going back.

Whether overt or covert, each person does offer signals of what one considers "acceptable" from another.

If anyone thinks I'm "blaming" a victim, then, you are making my point for me.

Get out of the situation - before it escalates (male or female); I've worked with a man, a DJ whom permitted me to publish his experience. His turning point was when his toddler-age daughters saw him cowering in a closet - afraid of his wife. He stood 6'2" and had no physical disability. He was just so "beaten" down that he reached his lowest point. His last thought was of leaving his wife. But... then, he thought of what message he was sending to his small daughters.

It's not as common for males to speak about about domestic abuse, but it does happen, and children ??? Their lives move in a direction based on how their parents respond.

P.S.: I've been through the times when some states had laws that stipulated it okay if a domestic partner handed a disabled person/partner controlled substances (Rx'd medications) and then took sexual advantage. All-the-while, other states stipulated that that act constitutes rape. One finds one's "true spine" real fast after going through the legal process to prosecute only to learn, "it's all good" or ain't no law against it. The laws in my state have, since, been re-written. But why one would allow for psychological rape... I dunno if the commitment isn't a two-way. There are resources - for males and females - in such situations.

[Kira]

When I was finishing up my rotations last spring, my health was really poor but I was determined to finish because I was SO close. I had to have some accomodations, though.

For one thing, I got admitted to the hospital in the middle of the most important rotation of the year (sub-internship), so I had to miss some time for that. Then, when I came back, I was definitely not 100%. They were not good about this at all. I needed some relatively minor accomodations... taking elevators instead of stairs, being able to sit down on rounds, being able to eat something small every few hours. My resident was a jerk about all of that. The rest of my team was a bit better about it, or polite anyway, in the beginning. But they quickly "forgot" whenever we got busy. And they would give me this attitude when I would say that I needed to take the elevator and would meet them upstairs, etc.

There is no tolerance for anything that comes off as even a little slacking in the med school culture, and I really think that since my issues are not immediately visible to them, they just thought I was whining. I was not on pain meds at the time (except a ton of ibuprofen and the occasional norco). I needed them to accomodate that short list of things, but they wouldn't. I actually got comments in my evaluation about how my health issues may make my performance suffer and that they need to be resolved before I can "comfortably do a residency." Well, that isn't going to happen, because this is herediary and not going away.

Because the medical education system is so intolerant of flaws, I have had to give up on my dream. I am still trying to figure out a way to make it work because it wil be so hard to give up on something that I love and that I have put this much work into.

I don't talk about my last couple of years of med school that much, but it was ****. Not because of the school itself; that was hard, but not anything I couldn't handle. It was because I couldn't keep myself out of the hospital. 17 hospitalizations in 2 years. Everytime I'd get adimtted to the hospital, I'd have to drop the rotation altogether. Then I would come back after being admitted, way earlier than I should have come back so that I wouldn't miss more days, and walk around feeling like crap. But they would act like I'd been on vacation or something when I'd come back, and talk about all the stuff they had to do to make up for it, etc. Instead of "how are you feeling now?" and "let's talk about a way to make up the time when you are feeling better," I got "where were you? so-and-so had to take care of your patients, and he's already very busy" and "you need to do this and this and this to catch up, and hurry up." And I don't know a way to get over that obstacle (frequent hospital admissions) to having my career, other than by getting in better health and staying out of the hospital.

What really sucks is that I love doing patient care, especially peds, and I think I am good at it (for a newly-graduated med student anyhow).

Anyway, this is really long and babble-filled, but I just wanted to respond because I have had to shoulder a significant amount of blame for my health issues, and like the others here, I am totally sick of it. For me, this turns into guilt and shame, but I already had a whole other post about that. It is costing me my dream and that makes me so bitter and mournful and I just can't get past that.

[Mark N]

Kira, you are making my point exactly. I am sorry that things have worked out this way so far. Don't give up because you never know what tomorrow will bring. Sometimes we are blamed just for the situation we are in. We can't control society or others but we can control how we deal with it. I hope you can work through the guilt and shame because making it this far is far more than any of those that proceeded to graduate have done.

Bobbi, I agree with having a backbone and that causes me as much trouble as anything. I appreciate the words and you give good advice. I hope your job gets straightened out soon, the way you would like it to instead of how the company chooses to do it.

[Bobbi]

Mark, I wouldn't have posted as I did if I (and others) didn't care about you :). You're part of the "family" and ... as important as it is to offer a soft place to fall, it also seems important to say... that stuff ain't okay. Even if no one else says it, I'll take that risk... so you know: we do care deeply.

(My job stuff: Still very much up in-the-air, but I'm confident that I'll get through it. For now, time is the salve. My belief is the company floated too many confidentiality agreements and it has created a hurdle - for now. I've set an internal deadline to move ahead, no matter what else :).)

[Quahog]

Why is it that the industry that is supposed to show the most compassion towards people doesn't? Is there some unwritten or written rule that says compassion is a sign of weakness? If you can't or don't show empathy towards your colleagues how on earth are you going to show it to your patients? This is one of my major complaints with the healthcare industry. I also have had a similar experience to what Kira has had. I was basically forced out of EMS (Emergency Medical Services) due to my health problems.

I also think this is why more and more people no longer wish to become doctors. Ridiculing and belittling your med students, interns and even residents is completely unnecessary and counter-productive.

If we are ever to receive respect from those who care for us, the mistreatment that they go through must stop. Contrary to what those of us in the industry have been taught, it is OK to care about people.

[Bobbi]

There was a broadcast some years ago (maybe 5?) that focused on med. students at Harvard - if I remember correctly - and the emphasis was on doing precisely as you mention, Quahog.

It wasn't about belittling students or giving lessons in how to distance themselves from their feelings and empathy but putting them in closer "touch" and also with patients.

Each student was assigned to work with a patient for "x" amount of time and to learn through the patients' individual experiences with their conditions.

It was truly a moving broadcast presented by "Nightline" (I think; my memory is a bit foggy on which station presented it).


I know today, a boo-boo happened with a refill on one of my prescriptions. I'm out, but I'm not letting it upset me. Know why? Because my prescribing doctor, I think, does a beautiful job working with students and also bringing them into her practice for fullfilling some of their grad. requirements. The error is just that and I know everything will be fine tomorrow. Now, if she degraded the students, I'd feel a whole lot differently.

There's no reason to treat people with anything less than respect.

[Mark N]

Bobbi, thanks for the concern and more importantly for reinforcing that I have a soft place to land here.

Bobbi is right about the show on TV. I think the old style and maybe still the style was to get doctors to deal with patients as objects and not be wrapped up in the emotion of what treatment needed to be done. If you aren't careful and take too many of our problems to heart it will burn people out and drive them from the profession. But, I think they have taken it way to far and it is necessary to see us as people and to care about us. I think health professional need to have a buffer but shouldn't create a wall between us. I know as a coach I had to care about my players and their lives but I couldn't cross the line to become their buddy. Without caring for them, I never would have gotten them to achieve the things they did. I think that medicine needs to rethink the relationship most of them have with one another and with us as patients. I am thankful that my PCP and OSS see me as a person and deal with me that way but I have run across many that never saw me as a person.

[ErinENj]

There are too many health professionals out there that only care when it's worth their while to, ie: getting paid for it. My first spinal surgeon was that way. He opened me up twice (he's why I'm in this position today, his actions and my lack of knowledge..unfortunately, I found this place too late to save me from the first 2 sugeries) but after the second surgery didn't work and only served to worsen my pain, he knew he wasn't going to be able to do a third surgery and get paid from my health insurance for it. He knew he wouldn't even make any money getting me the right testing. So, he told me "Well, I can't find anything that could be causing this pain. So, it must all be in your head. Here's the name of a great shrink that can help you." That was my last appointment.

I went through a laundry list of different types of doctors, none of which had the bedside manner I needed or who seemed to actually care until I ended up at the office of my surgeon in NYC at Hospital for Special Surgery. Too many of those docs just said, "You need a fusion. Let's see, can you do it tommorow? This is the only thing that will cure you." He was recommended to me by one of my mom's coworkers as being a great, kind doc. And he is. He's one of those genuine docs that only care about helping you get better, even if it means sending you elsewhere. He was the first doctor to say to me what I had known all along: if someone did a fusion on me, it'd be a huge mistake because I would be right back in the same position within 5 years. He knew that the IDET might help me, so he sent me to one of his colleagues that could do the surgery since he couldn't. Both of them treat me, not my disease. They both understand exactly how important school is for me and how essential graduation is for my mental health. So they're both willing to do whatever they can do to help me achieve that goal. My physiatrist, the doctor my surgeon sent me to, will do one or two more epidurals than he would usually do to help get me through. And I know for sure he's not in it for the money. My IDET wasn't covered through my insurance, and when we called for the bill after the surgery, the hospital told us there wasn't one. The hospital costs are always the majority of the bill, and there weren't any charges. They told us that because they failed to get prior authorization from my insurance company for the surgery, the hospital ate their costs, which I think was a bit over $11,000. And I really think that my doc had a hand in that. He's probably absorbed over $2000 of his own costs because he knew that our insurance only covered a small part of his costs, and that we couldn't afford it. He isn't in this buisness for the money, he's in it to genuinely help people. He sees people, not diseases.

The three PCPs I see (they're all in one practice and you can see any of them or only one of them, it's your choice. I see any of the three, but have my own preferences for who I want to see for whatever is wrong with me when I go there) all know me by name without having to look at my chart first, and remember what's wrong with my back and always ask how it is and how school is going. For example, I was at the doctor's last night and when she came into the exam room, she told me that she was glad that the muscle relaxers she had given me the last time I saw her (my back was out because my muscles were too tight) had worked. She found out because she had asked my mom about it. We all see the same doctors. We try to avoid one of them, simply because my grandfather died within about 12 hours of seeing him, but if need be, and if I know what's wrong and just need someone to write me a script, I'll go see him. He's one of those docs who understand that I know what's wrong with me, and that I've had enough experience to know what I need to fix it. My brother also goes to the same doctors, which is really great, because he's having back problems himself and because the docs know my situation, they are in a little bit of a better place to treat him, knowing that I have back issues myself.

I count myself as very lucky for having all but one of my docs really care about me, my dreams, my goals, and who are willing to help me get there, no matter what, as long as it is in their power to do so. And they do it because they genuinely care and want to see me succeed.

It's scary that there are so many doctors out there that just see dollar signs and diseases when we walk into their offices and don't see us, the people. They don't seem to connect that we're people too; we just have something wrong with us that we need help in fixing. There are too many people who go into the medical profession with the thought that, "I'll be rich by the time I hit middle-age. I'll be able to make my own hours, go golfing when I feel like it. It'll be the life." Imagine spending what, 10 years in school just so that they can make money. What makes our lives so difficult when it comes to doctors, I think, is that we have to weed through the flower bed to find the best flowers through all of those weeds. They hide the best ones well, and it takes a lot of time and patience to get through to the good ones. But when we find them, we hold on with both hands, even if there's nothing else they can really do for us. Both my spinal surgeon and physiatrist can't do anything for me, except for an epidural here and there, but I keep them in my deck of cards just in case something happens, and for when the multiple level ADR become approved.

Just because we have something wrong with our bodies, some sort of malfunction, doesn't mean that we're not people who deserve the best of treatment.

[Lea]

I understand what you mean. My DH just doesn't get it, and never will. I fight hard to work and care for my 11 y/o son. My DH always has to say something snide when I have to go lay down or complains about the housework not getting done, while he sits on the couch and watches TV on the weekends and throws crap on the floor. I am expected to pick it up anyway. With a 2 level PLIF and ACDF and another ACDF in my future, bending down to pick up trash isn't exactly my favorite thing.

I've asked him repeatedly "What part of disability you don't understand?" Even my car know I'm disabled. The happy blue guy in the wheel chair announces it to the world, but he can't see it. Sorry, long 9 hr day at work :)

Lea, formerly psychlea before the big BT crash

[Mark N]

Lea, sorry to hear that you are dealing with a spouse like this. At least I know my wife's outburst are from her fear of what is happening to us. It doesn't make it easier to deal with but it is easier to feel loved when it isn't really about me.

Maybe if you got one of those things to pick up items and used it around your husband it might work like a bat up side the head lol, and he might get the message that you need the help.

[Lea]

Lea, sorry to hear that you are dealing with a spouse like this. At least I know my wife's outburst are from her fear of what is happening to us. It doesn't make it easier to deal with but it is easier to feel loved when it isn't really about me.

Maybe if you got one of those things to pick up items and used it around your husband it might work like a bat up side the head lol, and he might get the message that you need the help.

I hadn't thought about using my grabber like that......things that make you go hmmmmmm! I know my DH loves me and it could be alot worse. He is just tired of me being sick, but he really should help more. I mean, I spent two years unable to work at all until my PLIF and a good PM got me upright again, but really..... taking Duragesic and Norco for BT doesn't exactly make one a peppy person:o Especially when it only takes the edge off and stops the screaming.

I'm proud that I am able to work again. I will never be a floor nurse again and I'm making alot less money, but my boss and my workplace are wonderful and understanding when it comes to my disability. I think what it may be is that all my energy is spent by the time I work all day and get my son taken care of, that it's interferring with my relationships. I've been really having to look at my role in how I treat my DH too, but I still need help and I do need to rest on the weekends.

It would be easier though if he could help around the house more, like getting those *&#$% boxes out the attic so I can take down the Christmas tree!!!:eek: He's letting my neighbors think that I'm just lazy, but I will be sure and let them know this weekend that it's all HIS fault:D

Sometimes its just okay to vent and then trudge on. That's what I like about BT!

[Matuboo]

We have discussed the way that TV, movies, those without pain, our partners, and society blames us for our pain and blames our meds as the problem. My wife took another shot at me yesterday morning because the pup needed to go outside for his constitutional and got a couple of barks in at 6:30am. She ignored the fact that I couldn't sleep because of my pain and went to the store to get several things we needed including cat litter. I took the pup with me to the store [he waits in the SUV and he loves to take rides] right after he came back in the house. The short story is I got blamed for being inconsiderate for letting him out and the little bit of noise I make during the night while it is okay for her to go to the bathroom during the night along with going to the kitchen and getting something to eat. The worse part was being ridiculed for my disability and I should accomodate everyone else because they have to work.

We are attacked by the press about the drug problems others have. Shows and movies show chronic pains addicted to their meds and the people around us think we should be able to do more than we do. I fight back when this happens because I am not going to take it lying [boy how I would love to lay down in a bed for hours of deep sleep] down without responding. As good a person my wife is, she seems to think anything I say is mean and yet she picks out the things that others can't help [ie my daughter's boyfriend is really nice but not very smart and made comments to me and my son about his lack of intelligence. My son told her how mean that was even when the BF wasn't around but she can't see the mean things she says even when I try and avoid doing that myself].

We need a good promotional company to blitz the country with advertisements to counter all the bad articles, "studies", the shows and movies, along with our society. I wonder if we could get one to do it for pro bono :D . If drug abuse is a problem then lets get society to blame the addicts and not those of us that use our meds correctly. If shows and movies want to have chronic pain people as characters then they have to portray us the right way. Those that fake our condition to try and get meds and disability should have a discogram once a week for one month.

The easiest way to solve all these problems is to have people live in our shoes for two weeks [they would get the idea quicker than that but they should suffer for awhile so they don't forget]. The first week they get to use our meds and see how much they help us then one week without meds overcoming their pain by thinking through it:eek: .

I know there is no good way to change this but it felt good to write it out and to think about how much better we would be treated.





For me, it's not only a matter of being held responsible for my pain but my medical problems in general, even by certain members of my own family! Granted I am not married, have no children and come from a home where my parents divorced when I was three. Having uncaring stepparents doesn't make things any easier. I have chosen to this point, not to marry because of these very issues. I don't run in to many women in my neck of the woods who would be supportive to a man who has health issues, perhaps I have been unlucky but at some point, I just stopped trying.

I have a half brother and sister who I used to have a fairly decent relationship with who have basically ignored me for the better part of eight years due to my health problems and difficulty working. As if I have some virulent form of Hemorrrhagic Fever that's contagious. So in a sense, I feel as though I have been ostracized to a certain degree. Only my father and mother are somewhat sympathetic and perhaps three or four friends I can count on. My own father has PD and pretty much all the empathy is saved for him, which is understandable but what my own family tends to forget is that I am a relatively young man, my father is not. What would my dad have done at 31 (when I first deveoped symptoms?) He would have just completed his residency and starting a family. I often wonder what my brother would do, he's a pilot for UPS and the USAF, he wouldn't be if he had the problems I had.

I would love to see my brothers and my sister walk a week in my sandals, or more appropriately, slippers. As cruel as it sounds, I don't know if I'd be able to muster up any empathy for them if they developed health issues.

I've taken plenty of crap about taking pain medication and other forms of meds as well. This is a very hot topic for me, I have shared my feelings with both my parents and they know how I feel.

As for the media, I could really care less about TV shows (like House or whatever.) They are for entertainment. What's real is what we deal with in our every day lives, our families, our jobs (if we are fortunate enough to be able to work) and our friends (social life.)

[Mark N]

Lea, I know what you mean about things not being all bad. I truly love my wife and lots of time we get along but she just can't seem to help herself and feels the need to say something nasty. It is nice to have her around and I appreciate the things she does but would like to see her deal with her psycohological issues instead of thinking the rest of us are wrong and she doesn't need help.

I am glad that you have been able to return to work. I was hoping that I would only be out on disability for a year or so but my doctor says it will be permanent.

Matuboo, it is so sad that our families react this way to us. I am fortunate that my kids really support me and my wife is good to me most of the time. You are right about being treated like we have some contagious disease but it does help sort out who our real friends are.

We just have too many in our society that don't want to take responsibility for themselves and their actions. That is one of the really frustrating things for me, I haven't done anything to bring about my spinal problems other than to serve in the Marine Corps and try to be physically fit throughout my life.

There are just so many people that know what they know and don't want to listen to reality. The war on terror is a prime example, I am not going to get into the politics of it just want to say that there are people that want to kill us for who we are not what we do. We haven't brought on the attacks ourselves and there is no excuse for targeting innocent people.

[Kathi49]

I think Bobbi summed it up best. When you become a dormat you DO enable the person treating you that way to continue on with it. As Mark knows, I have had some problems with my own husband in that regard prior to even my spinal issues beginning. Being retired military I guess he thought I should jump when he said jump. And, at first, I did that until I became such a nervous wreck I had to step up to the plate. This has nothing to do with loving someone or how much they love you. It has to do with respect and I got sick and tired of being treated like a recruit. I had never been treated like that in my entire life so it was shocking and hard to deal with it. This is just a typical example of how it went sometimes. He would come home and rant and rave and ask why my daughter's backpack was lying on the floor. So, I would jump up and take it to her room. (Yes, I know, she should have taken it to her room). It was things like this that was non-stop. So, one day he asks again, and I said, "I don't know why it is there. Why don't you ask it? Maybe it developed legs and walked over there!" OR...he would say, "Somebody spilled something on the floor. Why isn't it cleaned up?" Of course I would jump. But, later on I would say something like, "Hmmmm....I didn't see it. I guess YOU need to wipe it up when YOU see something like that." In other words...QUIT COMPLAINING AND DEAL WITH IT WHEN YOU SEE IT LOL!

Okay, okay maybe I was being a b****. But something had to give and it wasn't going to be my nerves! I mean why internalize everything which was just tearing me up inside. It took a long time but eventually he either mellowed out or finally realized I wasn't a slave to housework nor a scapegoat for whatever ailed him. Most of his rantings were due to edginess regarding his job...just stress. But that was not fair to me. So, I learned over time, how to stop him in his tracks. Now when he comes home all antsy over work or something, I simply say, "Hello! And how was YOUR day?" He then switches gears and instead of complaining will get to the heart of what might be bothering him about work,etc.

I love my husband too and I know he loves me...very much. His difficulty all along was being in the military for sooooooo long. I guess he expected everyone to jump when he said jump. And, well, I had to finally tell him to back off...which of course put him into major shock. LOL He is much better now though and has been extremely supportive with all of my spinal ailments.

And, last but not least, I am very grateful that I have family and friends around. I never really got a ration of crap about medications except from my own mother one time. So, I printed off an article about what life is like dealing with chronic pain and let her read it. She ended up crying and apologizing to me. That is not what I wanted her to do. So, I felt bad and told her, no, it was meant for you to UNDERSTAND what it is like. Since I have done that no one calls and gets demanding or gets onto me if I can't do something. They ALL ask now if I CAN.

[kukui]

yeap. its amazing how some react.

it pissed me off. Here i was in a lot of pain. bad enough i could barely walk. bad enough i ask her to stay home. and then she wants me to do crap? pfft. we had it out. but i don't think she really understands the amount of pain i am in. I can ignore most of it. but there are days holding my 5 month old son for more then 5 minutes is torture.

I would like to be able to switch bodies with people for one day. they don't even need to do it on a bad day. then maybe then they would understand.



I have to come in here and talk about what it's like from this side. It's my sig other that is in constant pain and barely making it from hour to hour.

I have told him several times that I would switch bodies with him in a minute and let him have a break. I told him to give me his pain at least for a couple of weeks, and he could rest.

I have to tell you though it is hard as heck from this side too. I watch him struggle, I see him refuse to take certain meds that I think are worth a try, I see him on the couch looking miserable and I don't know what to do. He told me once that pain is a lonely thing. I wonder how long he can take this.

So many times he shuts me out because he has his hands full dealing with what he's dealing with. I hover around and he just wants to be alone. So I worry. I worry about him. I worry that the doctor is not good enough. I worry there's something more wrong with him. I worry about finances. I worry about time and getting everything done.

I have to try to focus my mind on school but take care of the house, take care of business things for him, do the shopping, and run the pets to the vet. I'm tired from waking up in sheer terror in the middle of the night. This has taken a toll on me too and I'm not even the one in pain.

Then when he's in so much pain that he shuts me out and sometimes gets grouchy and wants to be left alone, I feel resentful. I have also felt resentful when I'm doing the household work. My mind knows not to resent him because he was unlucky enough to get this condition, but I resent the situation and my attitude probably doesn't always come out right.

I almost feel like pain is a wall that can come between two people. It's frustrating on both sides to see over the top.

Just some thoughts. Your wife is carrying a load of work and worry, but it's not right to be mean about it. I'm sure there are times with your pain that you get gruff or grouchy and it's going to be the same for your wife but for different reasons. It helps to find a time when you both feel a little less stressed to talk about it.

kukui

[kotira]

Dear Mark,
Thanks for bringing up an issue that is obviously a hot-button one for probably all of us. It seems that even the most supportive loved ones will eventually say the words..."But you're ALWAYS in pain," in response to us being unable to do whatever.

And I would guess our fondest wish is to wave a wand and let everyone experience just an hour of our pain. I have done several complete and total "clean-outs". Not taking any meds at all for a year, and even as long as two years. Just to prove to myself, once and for all, that the meds are not contributing to my pain in any way.

Of course all that did was cause me unnecessary suffering, insomnia and crazed misery. Still, I am glad I did it as now I can know for sure that I need to be medicated, and strongly. I tell very few people what meds I take. Why bother when even drs say to me, "How in the world are you walking and talking with all those meds in your body?"

Gee, I would think it would prove how desperately in need of the meds I am and that they are the REASON I am walking and talking.

Even my parents and brothers, who have seen me hospitalized over and over, seen me in bed month after month, seen me have hideous side effects in repsonse to meds and yet continue on in case this might be the magic bullet...

...yet they still, after 2 decades of my pain, said they thought it was all due to stress. Now that I have been in horrid pain every second of every day for 33 plus years, they finally get it. But the price to my emotional health has been enormous. Even when an anti-seizure med made my hair fall out in chunks, I overheard my mother tell my brother, "I am sure it is just stress." That cut so deeply.

I try to see their side. It is dreadful to see someone you love in pain. They have feelings and anger, too, and because they cannot yell or snipe at my disease, they sometimes do it to me. Still, the words hurt, they scar and even if I know the reasons behind the hurtful statements, I cannot help but cry.

When my mother is in pain from her RA, I get a glimpse of what they must feel towards me. I go nearly crazy seeing her suffer. I make a pest of myself trying to do anything that might ease her pain, but of course flares of RA have to run their course.

It will always be with us because it is a part of chronic pain. I often say that all the side issues surrounding the pain are as hard to deal with as the pain itself. The worst is when drs, who should know better, scorn me and talk to me as if I was the scum of the earth and that NO ONE in the world can possibly need that much medication. One GP I consulted while on vacation for a urinary infection saw my list of meds and that was all he could harp on.

He told me that he would never write me a script for my meds, not if I just needed ONE pill. I told him I had no intention of letting him or anyone but my neurologist treat my pain, because he was the one who had properly diagnosed and treated me after 26years of suffering.

I know your wife loves you, as you do her, Mark. And you wisely understand that she is suffering along with you, and that angry words are often said out of frustration, disappointment, dreams of what a life should have been like, and anger that is misdirected at you because she cannot yell at pain. Being helpless in the face of enormous suffering is a "heck" (the "other" word gets starred out) in itself for those who love us.

I know it would be for me. I sometimes feel glad I am the sick one as I don't think I could stand seeing someone I love in as much pain as I am.

Thank goodness for this and similar forums, and for the people here who understand what I am going through.

There will always be people who cannot understand. Even nurses trained in CP have said to me, "All of you seem so normal. You laugh and joke..." I told her that after my pain escalated 5 or 6years ago, I had to spend 3 years in bed before I was able to withstand the increased amount of pain.

Sorry for the length, just a bit more: at least none of my close relatives say things I have heard from acquaintences: "God must have a huge reward planned for you", or "Why would you choose to suffer like this? You know that life is all about what be allow to bring into it, don't you?" or, "You must be getting payback for something awful your soul did in a previous life. That's karma!" I have been told all of those. Luckily I was able to laugh, and did, right in their faces.
Best luck to you, Mark,
Kotira

[Mark N]

Kotira, thanks for what you have said. It is clear that you have dealt with this a long time and have come to a good understanding of what is happening. My mom is much better about my meds but once in a while she voices concern about addiction and I remind her of the time that I was at her house and didn't have my enemas. It got so bad she had to go to the drugstore for me because I was having all kinds of problems. I just remind her about what life was like for me before my meds and use the enema example of the suffering that can still happen if I try to get by without any of my normal routine. At least that helps her understand.

kukui, I feel for you and the appreciate the care you give to your SO. I know it is very hard for my wife and I make special efforts to not burden her with my physical problems. Still, when you see the one you love dealing with this year after year and getting worse it is hard to live like things are normal. The role you have is very difficult to deal with especially because you choose to stay when you could walk away and be done with our problems. That is one thing I really appreciate with my wife. My son points out that even when I am trying to have fun, my voice and tone says I am angry when really al it is saying is I am in pain. It is easy to start taking it as anger instead of pain. I just wanted to say CPers really appreciate someone like you because we know how hard our lives make the lives of others.

[GardeniaGirl]

What would my dad have done at 31 (when I first deveoped symptoms?) He would have just completed his residency and starting a family. I often wonder what my brother would do, he's a pilot for UPS and the USAF, he wouldn't be if he had the problems I had.

I would love to see my brothers and my sister walk a week in my sandals, or more appropriately, slippers. As cruel as it sounds, I don't know if I'd be able to muster up any empathy for them if they developed health issues.

I've taken plenty of crap about taking pain medication and other forms of meds as well. This is a very hot topic for me, I have shared my feelings with both my parents and they know how I feel.

Matuboo - I really relate to your post.

My two brothers have basically dropped me as my health problems have continued over the past few years.

It is still a sore spot for me. I am trying to work on letting go, but its not something that can be forced.

One of my brothers, in particular, is extremely self-centered to begin with, and so, he has lacked empathy in general, but I never really realized how much a part of his personality this was until I got sick.

I also have to confess that I probably will not have much sympathy for him when he faces some sort of major health problem, given how completely cruel and uncaring he has been to me all these years.

He would absolutely crack under the pressure I have been living with all these years - medications, tests, doctors, side effects, losing relationships, and on and on an on.

He threw a temper tantrum and stopped speaking at me 2 years ago when I could not attend his wedding due to my health. He absolutely refused to believe me and raged at me on the phone for an hour.

Since I don't have other siblings, the lack of support from the only two I have is more pronounced for me.

Venting on this board helps somewhat though....

[ErinENj]

I got an example of the one person in my life who treats me and my situation with the most disregard..

My mom got a call yesterday from my dad to say that he was on the way to our local ER. Turns out that he was going up the stairs at the firehouse to get to the truck for a call and something popped in his knee. He went to the call and then when he got back, it started to hurt. So he drove down to the ER (one minor detail: he hurt his right leg. Yes, the question still remains for me that if he was in as much pain as he said, how could he drive?). They did an x-ray and it wasn't anything to do with the bone. He had an orthopedic surgery over I think 10 years ago on this same knee. He thinks it's the cartilidge, but we won't know anything until he can get an MRI, since the hospital, for some reason, "didn't have anyone to do it." Makes no sense at all!! Anyway, back to the story...

So he's got a brace that runs close to the entire length of his leg and he was put on Vicodin. The issue with me is that he's running around playing the martyr while walking on his knee with no signs of pain, he isn't using his crutches, he's in a great mood, which we all know is practically impossible when in the kind of pain he says he's in, and I know him well enough to know that if he was in that kind of pain, he'd be in one heck of a grumpy mood because even if he has a headache, he's in a "don't come near me if you want to live" mood.

The other day, he came in my room to give me some information that my aunt, whose a nurse, sent for me about the implanted spinal stimulator thing (I don't remember the real name of it). We'd talked about it in the past, and we decided that with my tendency to grow scar tissue, getting the implant may be a dangerous idea and my doc agreed with that. He was part of that conversation, but because my aunt told him that it might be a cure to my pain, he wasn't listening to a word I said. I told him about our previous conversation, and reminded him of the conclusion, and he got into a huff and practically yelled at me that I never listen to him and that my aunt knows what she's talking about because she's a nurse and that if I'm not open to it, nothing will work for me, and that I need to stop refusing to try things that might help me. He doesn't understand the level of dissapointment I get when it doesn't work. It could be something that will work for 99.9% of cases, and it won't work on me. And I refuse to put myself through that if I don't have to. I'll try new things, as long as it doesn't mean surgery, like this implant does. Anyways...

So he's wandering around the house, giving off this poor me thing. Like "oh poor me, I'm in so much pain." What really, really got to me was when he said to me, "you have no idea what this kind of constant pain is like." My head nearly blew off. He actually said to me that I don't know what it's like to be in pain every time you move your leg. I said to him that he's right, I don't know what it's like to have pain when I move a leg. I know what it's like to have pain when I move, period. Doesn't matter what I move, even wiggling a toe, I have pain. He even asked me what pain meds I take because the vicodin he was given wasn't working so he was going to ask the doctor for something stronger and wanted to know what i used so that he could ask for that. When I told him that what I take is definately not something he needs, simply because it's a lot stronger than vicodin and a lot stronger than anything he needs. He said, you just don't understand what this pain is like. At that point, I walked away. I knew I was gonna start screaming with another stupid statement like that. And then my mom would get an attitude with me and blame me for the argument because I "know what my father is like." I didn't even want to start it.

Now I'm hiding my pain meds away as well as I can. I just can't believe it. This man who has been living with me for the entire length of this nightmare, who was in the hospital with me the first time I was put in for pain, and then was so sensitive to my feelings to bring a big container of chicken parm with the spaghetti, the garlic bread, and even the salad to my room while I was waiting to go into surgery for my first spinal surgery, which was delayed for 3 hours, which meant I had gone nearly 15 hours without food,and knows that chicken parm is one of my favorites. And he couldn't understand why I looked at him with those death eyes and told him in no uncertain terms to get the f#$% out of my g.d room and take that f@#$ food with him. He still doesn't understand why he wasn't invited to wait with us for my second surgery.

He's someone who will see me barely walking around the house, nearly crying when I get out of the chair in the kitchen, having a hard time standing long enough to get a glass of water from the refrigerator tap-thingie, and then will push his plate to right in front of me, which is his language for "you're doing the dishes since I cooked, no matter what condition your back is in." And it takes some effort to get his plate to right in front of me because he sits clear across the table from me, so he has to be doing it on purpose. He'll see me nearly crying at the sink as I try to do the dishes and walk away, and then not understand that when my mom comes home right after he goes upstairs to his room, she yells at me for even trying to do the dishes and asks me why I don't say that I can't to my father, and then pushes me out of the way and tells me to go upstairs. Then my dad will hear me coming up the stairs and call out to me, thinking that I'm mom, and then asks me why she's downstairs doing the dishes when she just came home from a long day of work and meetings and why I'm not doing them. When I tell him that I'm in too much pain, he gets this attitude with me and basically dismisses me with this annoyed huff, like he doesn't believe I'm in any pain at all and that I'm just acting like it so someone else will do the dishes. If I do ask him if he could do the dishes for me, he gets this look like how dare I ask him to do the dishes, no matter how much pain I'm in, because he worked a long day and is tired, so my pain shouldn't matter because he's tired (even though I got up earlier than him and have been working on school work since I got home from school and will continue to work until the clock reads a.m. and I get about 4 hours of sleep).

But now that he's hurting, he shouldn't have to lift a finger. How dare I think that he should dane to do his own laundry, even if someone else carries it down for him, and then both my mom and I shouldn't get upset for him yelling at my mom for doing his laundry and slightly shrinking one of his turtlenecks, that he could find anywhere, and probably on sale too. (Yeah, he came stomping down the hall to my mom's room, yelling at her, "Did you even bother to look at the washing instructions on this shirt?? Do you know how hard I had to look to find a turtleneck I actually liked? And now you go and shrink it on me?? Why couldn't you just look at the instructions so that you didn't screw up my shirt??" There was no "thanks for washing this," no consideration that she was nice enough to do it for him.

Okay, this has gotten really long. But my father is the biggest example of the things we've been talking about here in this thread in my life. I understand that he's in pain, but it's obviously not enough pain to keep him from driving and it's not enough pain for him to keep the brace on and to use the crutches he was given to take the pressure off of it. And to think that my pain doesn't matter simply because he suddenly has some miniscule taste of my daily life. And at least he can not use his knee if it got that bad. I can't not use my back.

Oh, and he managed to get my celebratory dinner for my 4.0 last semester cancelled again. This is the third time he's gotten it cancelled: first it was scheduled for last Saturday at 9 (it's a really popular resturant and that was the only time they had for a reservation and you can't get in there without one), but that was too late for him (not to mention that it would completely screw up my med schedule since I have to have an empty stomach to take my Opana ER, but I was willing to take it later or earlier so that we could enjoy a nice dinner at a fantastic resturant to celebrate something I'm really proud of.) So then my mom scheduled it for Sunday at 7p.m. but Sunday morning he decided that he didn't want to go that night because he didn't feel like it and since he had told my mom to schedule it for this weekend, no matter that I was feeling horrid with my sinuses and cough and my back was starting to go south with the geese. So then mom scheduled it for last night at 7:30, but all the sudden this happened. I was pissed. He came home apologizing and I just wanted to say to him that I had every right to be pissed since it's his fault that we couldn't do it last weekend! When mom called to tell me to cancel the reservation, I told her that we might as well forget it since it's likely that we'll be celebrating my graduation by the time we get this dinner taken care of. She got irritated and said, no, we'll find a time. And I just said yeah, let me know at least an hour before so that I don't get my hopes up again and have them tossed away, again thanks to him.

And he told me nearly 2 weeks ago that his knee was bothering him and that he had heard something pop in it that day and was thinking he should get to the doctor to get it looked at. So why was it all of the sudden an emergency last night?

I know I have amazing parents for taking care of me and understanding how important it is for me to graduate from college and are doing everything they can to make that happen, but I just don't deserve to be treated with the level of disrespect and disregard he treats my mom and I to every day.

[tenacious]

We have discussed the way that TV, movies, those without pain, our partners, and society blames us for our pain and blames our meds as the problem. My wife took another shot at me yesterday morning because the pup needed to go outside for his constitutional and got a couple of barks in at 6:30am. She ignored the fact that I couldn't sleep because of my pain and went to the store to get several things we needed including cat litter. I took the pup with me to the store [he waits in the SUV and he loves to take rides] right after he came back in the house. The short story is I got blamed for being inconsiderate for letting him out and the little bit of noise I make during the night while it is okay for her to go to the bathroom during the night along with going to the kitchen and getting something to eat. The worse part was being ridiculed for my disability and I should accomodate everyone else because they have to work.

We are attacked by the press about the drug problems others have. Shows and movies show chronic pains addicted to their meds and the people around us think we should be able to do more than we do. I fight back when this happens because I am not going to take it lying [boy how I would love to lay down in a bed for hours of deep sleep] down without responding. As good a person my wife is, she seems to think anything I say is mean and yet she picks out the things that others can't help [ie my daughter's boyfriend is really nice but not very smart and made comments to me and my son about his lack of intelligence. My son told her how mean that was even when the BF wasn't around but she can't see the mean things she says even when I try and avoid doing that myself].

We need a good promotional company to blitz the country with advertisements to counter all the bad articles, "studies", the shows and movies, along with our society. I wonder if we could get one to do it for pro bono :D . If drug abuse is a problem then lets get society to blame the addicts and not those of us that use our meds correctly. If shows and movies want to have chronic pain people as characters then they have to portray us the right way. Those that fake our condition to try and get meds and disability should have a discogram once a week for one month.

The easiest way to solve all these problems is to have people live in our shoes for two weeks [they would get the idea quicker than that but they should suffer for awhile so they don't forget]. The first week they get to use our meds and see how much they help us then one week without meds overcoming their pain by thinking through it:eek: .

I know there is no good way to change this but it felt good to write it out and to think about how much better we would be treated.

mark,

i couldn't read past your first paragraph without crying................just this moirning, i could not move when i awakened, and had actually spent several hours just to roll over (which i didn't succeed in) so at 8a i BEGGED my dh to make the coffee, because i could not move. he was sooo angry at me; he said that every morning there is something wrong with me, and i cannot make the coffee, like i should. a few hours later, he said this marriage won't work...........

so not only am i tired of others not believing me, i am more disappointed in my spouse not understanding, and not believing.

i was able to move when it had been several hours later and he told me the marriage wouldn't work ( i just recently received disability, he hasn't wiorked in a year, and he wants me to pay all the bills.........i don't get enough to do so.), so instead of crying like normal,when he told me the marriage wouldn't work, i PACKED. no man will ever put me through this **** again.

so yes, i too am tired of being one that is not understood.

[Mark N]

tenacious, I am so sorry to hear your spouse is like this. It sounds like you are better off with him gone. The best thing for me is my wife is like this but I do have many days without this kind of attitude. I also know that it stems from her problems of self based on her upbringing. I know that I may just be making excuses for her but I do love her as much now as I did when I married her. I have hope, that as she gets older, alot of this will disappear since her mother had a mental breakdown about this same age. I just need a place to let off some steam so I don't explode on her or at my son. Thanks for your kind consideration.

In your case, it doesn't seem like there is much hope for a man that hasn't worked for a year and still thinks that someone in severe pain should do things for him. It isn't easy leaving but it sounds like the best choice for you especially now that you have your disability income. I hope you find your days getting better and maybe without the stress caused by your husband your pain may decline.