Looks and CP [Archive] - BrainTalk Communities

Kathi49

04-04-2007, 03:53 PM

You guys have me laughing...boy, if ain't the truth!

I heard it alot when working...but really, they didn't know what was going on inside because it's not like looking at a broken arm or something.

BUT...I said the same thing to a girl one day that had the same type of headaches I had. She always dressed very nice and was very attractive. So, one day I told her how nice she looked. And she said, "If you only knew, I just want to drop my head on this desk!" Anyway, we compared a LOT of notes from then on out. :)

But yeah, you just want to scream...I feel like sh**! I always liked..."...won't a Tylenol help with that?" UGH, you either stop explaining or just put on the happy face which is awfully hard to do sometimes.

jena1225

04-04-2007, 04:24 PM

But yeah, you just want to scream...I feel like sh**! I always liked..."...won't a Tylenol help with that?" UGH, you either stop explaining or just put on the happy face which is awfully hard to do sometimes.

Yeah, that one KILLS me! My mom still asks me how I feel everyu single day, so I just tell her, like sh*&. She says, did you take an Ibuprofen?" I laugh to myself and just say yep! lol

Mark N

04-04-2007, 04:29 PM

I just look at it as a testament to my acting ability:D . Really though, that is the point of getting out, I want to look as good as possible and not look the way I feel.

Kathi49

04-04-2007, 04:30 PM

LOL!

My mom does the same thing...just about every day it is, "How do you feel today?" I just say, fine or okay. I really don't want to worry her too much with all of this. So, like you, I just take a med and do my own thing LOL! Oh, she and my sister DID want me to drive yesterday to go to lunch. So, I flat out said, "I can't drive, my butt hurts!" And THAT was from going outside to pick up some sticks! Can't win for losing!

spoiledbeth

04-04-2007, 04:35 PM

lol I usually tell them I'm hanging in there, that way I don't feel like such a liar, but I'm not burdening them with my problems. There are very few people that I actually will tell the truth to, I know most people can't handle the full truth.

Kathi49

04-04-2007, 04:45 PM

You're right sb.

They either can't handle OR don't want to hear it. But that's okay. The people that really matter are the ones that will listen. :)

Oh, and getting back to our moms. I was just now thinking what would it be like without them? At least they DO call LOL! And I have to laugh because my mom will be 81 and her husband is something like 84; both in perfect health. And they hit the town hot and heavy...it is hilarious! Honestly, the way they act is like being 18 again which is GREAT! But one day I just looked at her and looked at me and I said, "Something is definitely wrong with THIS picture!" LOL

jena1225

04-04-2007, 04:53 PM

That's funny Kathi. I can see your mother being that way, only because when I picture you, I think you are like in your 20's! You sound so young and peppy :) Even though you ARE young!! oops, :D

Yes, I talk to my mom everyday. I mean, we both work for the family business, but she still calls to see how I am :) But when she asks me how I am doing, and I tell her, she still says "Still?" lol. But, waddya gonna do!

debhun

04-04-2007, 05:04 PM

I was just over to my moms she lives next door. I had to go over and help her with some thing. Any hows we were talking and I said my memory is going really bad. She comes back and said quit smoking. Now do you see why I don't tell her nothing. Should have keep my mouth shut. Her phone rang and I left.

Deb

jena1225

04-04-2007, 05:10 PM

LOl. My mom has said that to me too, and SHE smokes! geez :rolleyes:

Kathi49

04-04-2007, 05:20 PM

Why thank you Jena,

NOT in my 20's LOL! And if you were to ask my daughter she would call me a "Bup a Log". Inside joke because when she was little she got mad at me one day because I wouldn't jump when she said jump and said, "Mommy you are a bup a log (bump on a log)!" AND...your mother sounds just LIKE mine...she says the exact same thing...STILL! Well, duh, mom, like it is going to change overnight? LOL

Deb,

Oh, no...the smoking thing LOL! I hear it too! She's not as bad about it as she once was. But the funny thing is neither of my parents ever smoked but all the kids did. Now, everyone has quit except for me. Well, my sister still does but only when she is highly stressed out. Anyway, I need to try that Chantix and I keep putting it off and there is no excuse for it. Except to say I like smoking. I know, I know...I am a horrible person. But darn, when you have given up EVERYTHING that is the only thing left that I can enjoy. I haven't had a glass of wine since 1999, gave up all soft drinks back in 1984, still have caffeine but that is in moderation and have to watch the chocolate and sweets now too.

jena1225

04-04-2007, 05:46 PM

Kathi - that was cute about your daughter :).

I am in my 2nd month on Chantix :rolleyes: It took about 3 weeks for me to get down from a pack a day to only 2! But the last 2 days I have had like 4 or 5. I was so proud of myself too! :(

I am not giving up though, I am going to get more serious about it again right now! I am 36 and have been smoking since I was about 16. I know it sounds stupid, but it becomes a part of who you are. Just like, if I was able to get to 2, I know I could quit completely, but to NOT have at least 1 felt weird, lol. I warned you it was stupid!

debhun

04-04-2007, 05:54 PM

LOL mom thinks quit smoking and excise is the answer to it all. she don't understand FM and osteoporosisand and bad disk in my back. She is 72 and she is in better shap out of my whole family. Dones not take 1 pill. Her brother and 2 sisters are all in bad shap and mom is the oldest. Her baby sister just had 2 strokes at once. She is 60. Didn't think she would make it but she did and is doing great in rehab now.

I am so glad I found this site All of you are very freindly. I have been on one other one that are not.

Kathi49

04-04-2007, 05:55 PM

Jena,

That's great! See, I need to take the stuff! My friend who is MUCH older than me was a 2-3 pack a day smoker and she quit totally just recently. And she told me it didn't bother her one bit to be around people who smoked. But she did say you really have to want to.

What I want to know is...did Chantix make you very nauseated? I am hearing that from a few people.

Anyway, yes, you make sense. To be without just one WOULD feel weird! I know my friend said she caught herself reaching for her cigarette case many times! LOL

Jo6

04-04-2007, 06:37 PM

those mama's can get very sassy in their "prime"!:D My Mom has passed on, may God rest her soul, but I went in one day and she was on top of a ladder putting the border on wall paper. she had pappered the whole room and I didn't even know. I yelled for her to get down off that ladder and she tells me she isn't finished. I said I would do it .but she said I wasn't well enough:mad: She was in her late 70's!!

Nnow I'm old and my kids try to boss me around. the smoking thing, they all yell at me for that, but as Kathie said, you give everything up, what would 1 vice hurt? I had rather have a glass of vino, but I like waking up in the mornings:)

Kathi49

04-04-2007, 06:51 PM

Jo6,

I am sorry your mother passed away. :(

But I like the "Sassy Momma's"! It is amazing what they can or could do. I caught my mom just last year trimming about 70 hedges in the hot sun. I really got onto her about that. But she comes back with, "This is what keeps me young!" Anyway, according to my mom she just has a certain way she does things...so bug off. LOL

My daughter HATES my smoking and I NEVER hear the end of it! But one day two of her friends came over and one of them smoked (they were all 22). But, oh, did I start laughing! I told her never to say a word to me again about how she hates the smell of smoke when her own friends are lighting up around her. Yes, I know it is a bad vice and I would like have a glass of wine also...but can't for the very same reason you stated LOL!

I do have a cute story though about smoking. When my daughter was 3 or 4 or so she asked me about smoking. I don't know why I said this because I am certain she didn't understand. But I did mention addiction and that I liked smoking. So, when she was riding her trike one day I told her to stop and slow down. And she yelled back, "I can't! I'm addicted!" Geez!

Oh, and Deb, my mom is fond of saying the same things...quit smoking and exercise more!

curiousforever

04-04-2007, 08:46 PM

What I hate is on the days I feel decent how people say I look 'spunky'.

Ahhh just shuddap.

Scar Tissue

04-04-2007, 09:03 PM

I tell them to get their f*****g eyes checked, quit lying, leave me the H**l alone and get a life!!!:mad:

(LOL) NO I DON'T, I'M LYING!:D

I just tell them thank you and compliment them, do my little small talk and be on my way. But sometimes what I wrote above is in my mind the whole time!!!:eek:

jena1225

04-04-2007, 09:57 PM

Kathi - you might want to look into that shot they have been doing. I do think it is more effective and around the same orice in the end. The Chantix is a 3-month thing at $109 for each rx. Ant I THINK the shot is about $300-$350. It MAY be more, not sure.

One of the side effects is nausea, but I have not felt that way once!

BrokenBladder

04-04-2007, 11:03 PM

The funny thing with me is that if I attempt to put makeup on and get dressed up people will say, wow you jus look fantastic. Oh really? Well it only took me 3 hours to look this way and now I just want to go to bed, LOL!!
I'm a smoker too. I really do know I need to quit, but then what? I can't drink and basically the only time I go anywhere it seems like it's to another doctor!! I hate this CP and the life that goes with it.

ErinENj

04-04-2007, 11:11 PM

I was standing in the hall at school last week waiting for the classroom for my next class to empty out when one of my professors from past classes came up to me to say hello. She actually said to me, "wow, you're really hurting huh? I can see it all over your face." I just kinda said "thanks" and was thinking, "how horrible do I look? I know I'm not wearing makeup because I didn't have the energy to put it on this morning, and I may be wearing a sweatshirt, but it was on top of the pile." Her face looked like she was actually genuinely worried about me. It was really kinda strange. She's only had me for 2 classes, and in the first one, she wasn't understanding at all about my back pain, but in the second one, she basically said that if I needed to be, I could be absent for the whole class as long as I managed to get my work done and figure out a way to work with my group (speakerphones are great!).

I know that most days, I end up with my hair up in some fashion of a ponytail and always in jeans and a sweater or sweatshirt, and some times without makeup because I just don't have the energy or pain tolerance to stand at the mirror and put the effort in. But I do my best to hide my pain, and I'm really surprised she could see it on my face. Heck, my parents can't even see it on my face most of the time, either because I just always look like that with them or they can see it and just don't say anything about it.

I've never heard, "But you look so good." I've gotten the "Are you okay?" Or just the strange looks when I'm in a store and have done a tiny bit of shopping but I'm sweating profusely when it's 10 degrees outside. I have gotten the "you look like crap," either verbally or just from the look on their faces. Even on the days where I felt like I was looking fantastic, I still get those looks. I think the worst are the 'poor you' and the 'how hard that must be at your age' looks. Those drive me nuts.

I do my best to hide it by a nice big smile, but there are days when a smile is just too hard to find.

Lisa, you too?? I'm not the only one??? Yes, I'm a smoker too. After I get back from Amsterdam (yup, the trip is on! Dad's been looking for a job and going on interviews and he has money from unemployment, and mom is making some cash teaching for an online university, so things are looking good. Mom has been the one saying that we're going, so it's not me trying to read into her behavior to figure it out. I have to go through the dozen or so guides I have and see what I can find as far as money saving options. But, no matter waht, it's on!) I'm going to start working on quitting. I know trying to quit before I graduate is just suicide and it won't happen, and I know that I'll be smoking in Amsterdam, since basically there's no such thing as a "non-smoking" section in any resturant there and I know I'm gonna be tempted. I think it's good to be realistic about it. It's a nasty habit that I picked up 9 years ago. I started being a steady smoker when I went to college. And that's kinda how it's stayed since then. I know it's a really bad thing for my back, but trying to quit has been next to impossible while I'm in school.

slipnslide

04-04-2007, 11:15 PM

erfan

04-05-2007, 12:40 AM

I had a neighbor who would always base howI felt on whether or not I was holding my cane.

One time I walked 3 dogs right in front of her, using my cane. I forgot something in my car, so I went out to get it quickly and did not have the cane. Mind you, I just walked the dogs using the cane, which she had to have seen.

Well, she sees me by the car sans cane and says, "You must be feeling better because you are not using your cane."

My S-I-L is also one of those who will always tell me how well I'm walking even when I'm feeling like crap.

I think that these people want to be sick themselves so they resent you being sick and are in denial that you are sick.

Kira

04-05-2007, 03:23 AM

I get this, too. Like Erin, though, I get it both ways. Some people at work/school (same place) will comment that I either "look like I'm doing good today" or that "yeah, you look tired."

It doesn't always bother me, because some of the people really do care and know pretty much the whole story. There are a couple of people at work that always seem to be able to tell when I am sick. These are the people who seem to really mean it, have visited me in the hospital, etc.

I think that, in general, I have been really lucky to be in this degree program and working in this department at this point in my life. They have been so flexible, understanding, and genuinely caring. I have been able to move my work hours around a lot to accomodate my body's demands. They have come to see me in the hospital, called to check up on me when I am absent, and even helped me find my current metabolic doc (a close friend of my department chair). I guess that it doesn't bother me when the people at work say "you look like you're doing good today," because I will tell them when I DON'T feel good and need to go rest, since I know that they will be nice about it. I think I have explained about my disease enough that they get it that I am often hurting, nauseated, exhausted, etc.

I do have a problem with some medical providers thinking I look good when I am actually really sick, though. This happens at the ER. It starts with the clerk that takes down your name. They ask what I am there for and I tell them "I have a metabolic myopathy, I get recurrent attacks of rhabdomyolysis, and I am having symptoms of another attack." They invariably ask me "but what are the symptoms?" and I have to answer "muscle pain and dark pee." Then, they inevitably sum up the entire complaint as "muscle pain," when it is SOOOO much more than that. I mean, with each attack, there is a 30% risk of kidney failure, and it is a time-sensitive thing... So, there I am, with nothing written in the computer about why I am there besides "muscle pain." The triage people call back all of the people with coughs and sprained ankles first, because they look "sick" and I am sitting there "looking good" with nothing wrong with me besides "muscle pain." When I finally get called back to triage, I explain the actual reason I am there, and sometimes the triage nurses understand the urgency and push things along, but a lot of the time they just don't seem to get it. It makes it hard for me to get the care I need when I need it, because by the time I see the actual doctors, I have already been blown off by a whole string of ER staff who don't realize how serious it is because I'm not obviously bleeding, puking, or coughing.

Kathi49

04-05-2007, 08:58 AM

Reading all these takes me back to the work days. Most if not all of my bosses and co-workers were very understanding. And the Directors and what not did EVERYTHING they could do to accomodate me. They even offered part time work or working from home on a part time basis. BUT...if I had done that, my benefits would have been cut in half so to speak. I could not afford to do that.

And the whole point was...folks, I can barely keep my head up. And the big one? What good would part time work do if I NEVER KNOW when this thing is going to rear up? So, working part time was not the answer to the problem.

I just was incredibly lucky that when the "Buyout" came through in January, I had already met my time in in August. It just kind of coincided and my husband said, "TAKE IT!" And, well, that was after a lot of thought too because I knew the "Buyout" was coming way before it even occured. And I will tell ya, he was tired of the ER trips! NOT tired of me! Just had to leave work every darn time the clinic decided to send me. I have to laugh because one time they took me to the closest hospital and my husband ended up downtown! Geez!

Anyway, back to "looking good". I still hear it. When I get together with the gals from work for lunch, they always say it. Of course I smile and the whole time my neck, back and butt are ripping out! But I really try hard not to say a thing. Because honestly, I WANT to meet with them and cut up and joke around. When I am done with lunch, it is back home to relax!

And when I went to my Neurologist last summer she said, "I don't see it." And I said, "You don't see what?" She says, "I don't see the pain all over your face." And I started laughing. Well, heck, that must have been on a good day LOL!

On the other hand, yep, been flat laid out on a guerney many times in the ER in incredible pain and I probably looked like hell because who gives a darn about makeup or fixing your hair! Heck, I would show up in pajamas if I had to. :eek:

Scar Tissue

04-05-2007, 11:07 AM

Honestly I think the majority of the people that know you are hurt are only trying to make us feel better. I think they believe by saying that they are making us feel like we look normal and not like a leper in searing pain and to them they probably think they are making us feel better. I agree that 98% of the people we know deep down don't care about our pain, and 100% of them don't understand it. But when they see us they probably feel they have to say something, kind of like their backed in a corner and don't want to ignore us, so they make these statements. It's an easy out for them because if they would say how have you been feeling, they are afraid we will tell them and they really don't want to hear it. So by saying we look great they can skirt the issue about how we feel and get out of the conversation quicker. Does this make any sense to any of you?:confused:

P.S. Oh, by the way, did I tell you all how good you look today/ (LOL):eek:

oh_snap

04-05-2007, 11:28 AM

"scar tissue" hit it right on.

I don't think people are trying to make us feel worse by saying we "look good". I can spot a spinal person a mile away, now, although I don't tell them they "look good", I may ask if they need help carrying something, or issue that cliche, "hang in there". (now that is my own feeble way of cheering them on, admittedly).

These days, I do everything I can to reassure anyone who cares that I am "good to go". Why? Because I also went through that early phase where everyone asked on a daily basis if I was okay, cured. Was "it" gone? Was I better?

I initially intrepreted those questions as an inference of weakness on my part, but, it turned out, that they were simple, caring words issued from people that didn't like to "see" me suffer.

Today, they know I have a struggle, but I am alive, and for today, that's pretty good. They know it, and I am there with them.

How do I "look" today? Mahvelous, just mahvelous! :D

Kathi49

04-05-2007, 11:52 AM

Scar Tissue,

I was reading your post last night with all the cuss words and you had me going I was laughing so hard. I typed up this big, long response and couldn't quit laughing and accidently deleted or wiped out the whole thing LOL! I am telling you it sounded just like something my husband would say. Just for shi**s and grins I will tell you what he said to someone on the phone the other day; and he was speaking to someone about someone else that had been in a meeting. So, here I was barely awake that morning and sipping coffee and I heard him say, "...yeah, I asked him, what gear in your brain puts your mouth in park?" I think I spit coffee clear across the table I was cracking up! So, the things you said just made me think of dear hubby because he DOES have a way with words! I could tell you of a 1000 or more instances where it just comes from out of the blue and I just die laughing.

Oh Snap,

It's nice that you help people carrying things and such. The daily basis thing of reassuring everyone gets old. That's why I do as you do...I just say okay, or fine OR I just tell them I can't do something on a particular day. Most ALL of them now, my close friends and family understand even if they don't get all the technical aspects of it. They know I struggle and really most of the time they offer in some way to help. But geez, I kind of hate that too because I don't want them to out of their way or burden them. But there have been times I have had to.

What is kind of neat is that a couple of my friends are now going through the neck thing. So, now they know! I hate to say it that way because I DO NOT wish it on them but it is great if I can really help them understand procedures and such because in a way it helps me to talk about it. It must be the age group LOL! I just got an email the other day from a guy I worked with. He had a C5/C6 fusion right before I retired and was doing great! Well, now he is having more problems. So, if I can be of help, I will. :)

Anyway, another funny and really weird thing is that the latest rumor (from where I used to work and my husband still does) is that I have cancer. Now where that came from I do not know! I bet someone assumed since I had surgery in September it was due to something like that. That building houses 3000 people so it is no wonder things get misconstrued! But my husband told them, "Well, if she did have it, it is gone now!" LOL

And one last thing I about died on was when I had my first fusion. My friend and secretary told my husband to send an email to let them all know how I was. That butt sent out an email that said my head was still attached and now he couldn't go to Hawaii! Geez! My friend thought it was funny and sent it to everybody and their brother! I about went through the floor!

BrokenBladder

04-05-2007, 12:04 PM

Kathi now you have me LMAO!! Your husband sounds like he's really got a way with words!!
Cancer?? It simply amazes me how people are more than happy to spread around this sort of gossip. Wow!! Thank God it's not true!!

Scar Tissue

04-05-2007, 12:18 PM

Just a quickie to give you another laugh. I answered the phone one day and it was AT&T trying to sell my wife another option for our phone. (The phone was in her name because when we moved she called to have it installed) The lady asked if Ellen was home and I said she was unavailable to come to the phone, she then asked if Mr **** was home and I said I sure as Hell hope not! There was a second of silence but I knew she had to ask, Why would you say that? I quickly answered her because I'm her lover and if he's home my a** is in big trouble!! The phone went absolutely silent, and about three seconds later I heard it hang up! I told my wife about this and we had one heck of a laugh! I wonder what that woman was talking about on her lunch break to the other workers?:eek: :eek:

Kathi49

04-05-2007, 12:52 PM

ST,

I love it!!! I said you say things that my husband would say. That was great! I ought to try something similar myself sometime...heeee! :) You need to come up with some more...I could sit here all day and just laugh!

Lisa,

I know it! Those people over there either get lost in translation or just like gossipy rumors. Not all of them though...most are nice. I truly think something just got misconstrued when I had to go in for surgery a second time. But how this person came up with that I don't know!

Anyway, NO, you do NOT want to know everything my husband says LOL! The one my mom likes the best is as follows. When I was first working with him in Chicago (a base closure) he was always nice and helpful and a great teacher/team leader. So, we went out to eat for lunch one day. There I was all prim and proper because he was so professional all the time. Well, this guy would not go on the green light so my husband yells out the window, "Hey, blankety blank, any particular shade of green you are waiting on!" I lost it! I was just cracking up! I know, it was rude and crude but that was what so funny. I had never heard him talk like that in all the years I had worked with him.

Oh boy, I could go on and on. But I will stop right here because there are just way too many stories! And last night he had my daughter just dying laughing about several topics!

BrokenBladder

04-05-2007, 01:04 PM

IMHO humor is truly the best medicine!! I know I don't laugh as much as I used to, but my hubby can coe up with some good ones too!! Not like your hubby's KAthi!! That is plain hilarious!!!

oh_snap

04-05-2007, 01:05 PM

well, at least we can still appreciate wit, and humor. When that is gone, we are screwed. :D

Mark N

04-05-2007, 02:21 PM

Scar, that was a great response it gave me my laugh for the day.

Oh_Snap Have I told you that you look mahvelous today:) .

debhun

04-05-2007, 02:23 PM

Would like to thank you all. You all are the BEST. You make me feel I belong here. Love a good laugh

Deb

freckles

04-05-2007, 05:13 PM

;) Here I thought I was the only one who wanted to swat someone who offers advice to take Aleve or Advil because it works "so well with their pain". What do they think I am: Stupid? If Aleve or Advil worked, surely I'd rather take that than go through the hoops we all have to go through to get the monthly supply of meds that keep us sane.

I guess their comments make me feel like my pain is somehow minimized in their mind and that surely I can't possibly hurt as bad as I say I do. It's almost like they want to tell me that I should grow up and put up.

It's gotten to the point that I tell very few people about my chronic pain and when someone asks how I am doing I generally reply that I could be better and could be worse, and change the subject. Even my grown children don't have any idea what I am going through...just hubby understands because he sees me walking the floor at 2 am trying to get the pain to stop.

So thanks for bringing this subject up. At least I know I'm not alone.

Lea

04-06-2007, 12:36 AM

When my friends and coworkers ask me how I feel, I just tell them to ask me another question. I hate having to talk about my health anymore. I joke and smile as often as I can. Like the quote from the movie Elf "I like smiling, smiling's my favorite!":)

Mark N

04-06-2007, 06:44 AM

I am glad there are so many people in the world that have no clue that there are pain levels that Aleve, Advil, etc won't touch. You just wonder how they got so clueless. Just remember they aren't bad people they are just like all of us. Until we live like someone else we really don't know what they are going through. Being stationed overseas opened my eyes up to how different our lives are in the U.S. and other advanced countries while the majority of the world's population can't even dream of what we have access to or own.

Kathi49

04-06-2007, 07:19 AM

Freckles and Mark,

Hey, if I thought Aleve or Tylenol would work, I would have taken them a long time ago. People just don't get it. I think I talked about a girl I used to work with that had Trigeminal Neuralgia and a badly fused ankle (Army did it). Anyway, hate to say this but she was known as the big "B" in the office. None of us know if her pain made her hateful or what but she was pretty darn mean.

I was having one of my bad spells one day and she came over to my desk and once again says, "Well, I take Tylenol and it works for me just fine!" That was not true because I saw her cry alot at her desk. Anyway, she was just loud and hateful and I didn't really want to listen this. And the office was so quite you could hear a pin drop. I tried to calmly explain what was going on but she got even louder. Finally, I just got loud right back and said, "________, do you have a doctor you see for your conditions?" She says, "No, I can't afford one!" Not true either and absolutely ridiculous based on her conditions. So, I said, "Might I suggest you go right back to your cubicle and look one up. You obviously need help for whatever the hell ails you!"

I mean, the whole place erupted into laughter. Boy, she was mad. But everyone there knew how she could be. But I had had enough of her mouth. She didn't bother me after that LOL! But sometimes you just have to stop people in their tracks.

Anyway, just another typical example of people that just don't get it!

Lea,

I am with you on just smiling and going on. I have said in other posts that I got tired of hearing myself talk about it. And it is was just too technical to go into long, lengthy discussions. So most times I just said, "Fine." NOT! LOL

Mark N

04-06-2007, 08:01 AM

Kathi, I used aspirin and the Tylenol for years because I hated opiates so bad [just the way they made me feel]. I suffered but it was better than nothing and then it wasn't even close to dealing with my pain. So it became time to see the doctor about finally using opiate meds to deal with it. Like I said, thankfully for so many people, they just don't realize there is a different level of pain out there than they are aware of. That is hard to believe when you have had a terrible toothache, a woman has gone through labor pains, or a broken leg/arm but unless they have had something that gives them a much higher pain levle they will not understand what it is like.

Kathi49

04-06-2007, 08:16 AM

Mark,

Nope they don't. They won't ever completely understand until they have gone through it themselves. My sister and my niece now have gone through neuropathic pain. And they both told me it was unlike anything they had ever experienced before. So, to make a long story short, they completely understand and have said as much now, WHY it is I can't go somewhere with them or why I simply say...I can't.

It's like with any form of pain or condition; unless you have lived it, you just don't know what it is like.

I do have to say though most people I know might not understand totally, but DO lend an ear or hand when I need one. I kind of went through this with infertility. All the comments were well-intentioned but still sometimes hurtful. But really, when you think about it, WHAT can they say? They are not the ones experiencing it. They can't begin to know what it feels like. But I am grateful these people I speak of are still in my life. All they can really do is just be supportive. :)

Kira

04-09-2007, 02:24 AM

I have been pretty much maxed-out on ibuprofen and tylenol (both at the same time) for the past few weeks, in addition to my opiates and the muscle relaxer she called in. My pain just has not gotten back down to tolerable levels ever since that last rhabdo attack. I know it takes time but this is just ridiculous.

I called the pain clinic last week and told them how bad it was, and they called in some muscle relaxers for me. But muscle relaxers have never worked for this kind of pain for me, so I don't know why they'd work now.

I have an appt on Weds with my pain doc, so we will probably tweak things then. And I have a PT appt in the morning, so maybe he can help make me feel better for a couple of days (massage or heat or something).

Before I got the opiates, I was taking max doses of ibuprofen or aspirin. Now I seem to have come full-circle, b/c I am taking max doses of those drugs again (though I am still on my pain meds).