But You Look Fine

Does anyone else get tired of hearing this, of not being believed? Of being expected to carry on with the duties and obligations of life just as if everything were normal, when there is a three alarm fire going on in your face?

I wonder sometimes how severe ATN pain stacks up alongside the pain of Stage 4 cancer. Sometimes, I can’t imagine it being any worse. I’ve had attacks that were worse than my natural childbirth!

This is done on an Ipad, so I am not even going to try to correct all of the errors.

If Medical Science cannot find out what causes ATN, in most cases, it certainly would be nice if they could give us adequate pain control to last an entire month, or with refills.

We are just expected , in most cases to carry on with the same things as before without the benefit of being believed. Sometimes, I think that because I look fine, they think it is all in my head. They must, or they would understand that today I don’t even feel like opening my mouth, much less leaving my home and yet, I have to.

Invisible illnes . . . . ain’t it grand. Maybe if my face looked the way it felt, they would understand.

I wonder how many of you can relate with this.

Exactly!!! I'm teaching half days this year because of ATN and other health problems. People ask what exactly is wrong with me and then say, "Well you look good". Makes me feel like they think I'm making it up or something. One of my friends said to just say, "Thank you! At least I look good, just wish I felt good too". Or, we could just say,"Thank you!" and not give a hoot what anyone thinks. There are days I wish some of these people could feel the way we do just for one week. We would suddenly have loads of sympathy.

Take Care.

100%. Of course I look different all the time. If its really bad I wont go out. doctors have a hard time belieing what they cant see.

Add a face lift to this and you are really nuts. However the idea of looking as bad as I feel on those very bad days isnt very appealing. Thats why I use the camera.

Neuropathy makes it a doubleheader. Noone wants to look ill, but you do want credibity.

My real friends and family know and a few ery perceptive doctors.

Its the many faces of Elaine. If a dr doubts me, I am out of that office.

Steph its so very normal, its unreal. I was told I would not win a malpractice case because the jury would not sympathyze with me

hugs and love.

yes.

Hi Stef,

I look fine, in fact I look better than fine :) therefor I must be fine. I lucky in a way, most know my story and am amazed im still walking around acting all fine. I have about 20 mins of pain free time a day when I first wake. Those who don't know me or hear how TN saved my life, they will never understand.

Thank god for great friends and LWTN. Stef, you looking pretty great also! Hope you feel the same way underneath soon :/ miss ya

Take care,

Tracy

Hey Stef

Yes I can relate to this, nobody can see it and thats the problem. I am sure people still think I am making the pain sound worse than it is even though I went through an MVD.

I have just become some person with "oh no not that again" "are you not getting better?".

Unless I break down in tears the pain cant be that bad, I struggle and and struggle and push myself just to do the easiest task of making dinner.

Oh if they could have it just for 1 day....

The whole "You don't LOOK sick" makes me crazy. I see it on faces all the time. Especially when I'm trying to focus away from the pain with my sense of humor. "You can laugh so how bad can it really be?"

I actually liked it when I developed a stutter (from seizures I was having from my MCS implant) because it was SOMETHING that they can see. It made people uncomfortable but it was almost a justification for me. "SEE? Toldja something was wrong!"

Admitting the pain would equal losing my job. Even with a brain aneurysm and coiling they think I am either grouchy or lazy. With the side effects from the gamma knife, the side effects from the meds and the break thru pain, well I am sure you all know what I wish.

I get that all the time Natalie, if only they could experience it for just one day… I was just telling my husband today that it’s not like anything you’ve ever imagined, when it’s at it’s worst you just wanna curl up in a ball- I still don’t think he gets it. How can he? But at least now… he IS trying. Min

Natalie said:

Hey Stef

Yes I can relate to this, nobody can see it and thats the problem. I am sure people still think I am making the pain sound worse than it is even though I went through an MVD.

I have just become some person with "oh no not that again" "are you not getting better?".

Unless I break down in tears the pain cant be that bad, I struggle and and struggle and push myself just to do the easiest task of making dinner.

Oh if they could have it just for 1 day....

Hello All,

When I hear the "you looking fine" thing, I respond by shaking my vial of pills and say,"ya know,some refer to TN as the Suicide Disorder. Look it up on the net and be sure to watch the drilling through the skull video"..

I went to a Blues Festival today. I watched the kids getting their faces painted. I thought about a tear drop and lightening bolts traced over the trigeminals. Didn't paint my face. Maybe Halloween instead.

Up late tonight thinking about lyrics to the "TN Blues" Any ideas? Maybe we can send them to the Music Group.

Stef: Worse was when I was sent to a Social Security Doctor, first and only time he saw me. He did not want to look at any of the other doctors statements and I was having a “good day” (pain level between 4-5). His coments were “you look fine” and then his report was “Alleged TN pain”. I was a good boy and did not kill him. You are correct that many think we are faking it and I beleive that is why it is so hard for the doctors to treat us. Too many druggies in the world trying to get pain meds. If they were able to come up with a med to handle the pain that was not on the DEA bad boy list I know that we all would be very thankful.

Jerry, that's just appalling!!! I was told by one of my GP's partners when I had to see a diff doc cuz my GP wasn't there the day I needed some help.. that I would probably have to be on some form of pain management for the rest of my life and that I was LUCKY that my GP knew me, before I had developed ATN. He said some patients complain just to be complaining, they don't really want to feel better.

Yeh, I'm real lucky aren't I....

Jerry said:

Stef: Worse was when I was sent to a Social Security Doctor, first and only time he saw me. He did not want to look at any of the other doctors statements and I was having a "good day" (pain level between 4-5). His coments were "you look fine" and then his report was "Alleged TN pain". I was a good boy and did not kill him. You are correct that many think we are faking it and I beleive that is why it is so hard for the doctors to treat us. Too many druggies in the world trying to get pain meds. If they were able to come up with a med to handle the pain that was not on the DEA bad boy list I know that we all would be very thankful.

I keep hearing pain meds. I am 3600mg of neurontin daily but not pain meds. What are you taking that helps (at all)? I know we can't suggest but what helps you?

Thanks! I went with the Gamma Knife (bi lateral) to get off the Neurontin without success. I will look into the Pain Relief tab.



Jackie said:

Ravenm, neurotin is supposed to be a pain relief med in that if it suits you and does the job for you it will relieve you of pain. I can just imagine how cross that will make some people to read and apologies, it is not meant to. For some members this dose would give total pain relief. Others may be better trying something else, many meds are listed in the Pain Relief Info Tab.Hope this helps answer your question.

Ouch, please keep politics out of this.

Hey

What are your replies to the people who say you look fine? are you any better? I am starting to just bite my tongue as I am fed up of repeating myself.

pain free wishes to you all

Nat xx

Thank you/thank you for asking. My doctors and I are working on a plan that could help. I appreciate the support.

AMEN TO THAT, Jerry!



How nice it would be if there were something that actualy worked for ATN pain which was not a Scheduled Drug.



Yes, I’m also tired of the “you look fine, why do you take so many pills” type of insinuations.



I do my best each month just to weedle enough meds out of my PM Management Doctor to be able to take care of my children to the best of my ability. Opiates are not magic bullet.



Yeah, I just filed for my first try at SSDI.



I’m so glad you were a “good boy” that day. Congratulations on what sounds like a monumental task! It’s not easy to be nice when these things happen. Well . . .it’s easier for me these days, because, most of the time, I am weak and can barely talk, so I just wave a “whatever” to things like that more often than not.







Jerry said:

Stef: Worse was when I was sent to a Social Security Doctor, first and only time he saw me. He did not want to look at any of the other doctors statements and I was having a “good day” (pain level between 4-5). His coments were “you look fine” and then his report was “Alleged TN pain”. I was a good boy and did not kill him. You are correct that many think we are faking it and I beleive that is why it is so hard for the doctors to treat us. Too many druggies in the world trying to get pain meds. If they were able to come up with a med to handle the pain that was not on the DEA bad boy list I know that we all would be very thankful.

Exactly, Natalie.

Sometimes, when I have a bit of spunk, I actually say things like that, "Oh, if you could have this for just one hour, because I wouldn’t wish it on my worst enemy!"




Natalie said:

Hey Stef

Yes I can relate to this, nobody can see it and thats the problem. I am sure people still think I am making the pain sound worse than it is even though I went through an MVD.

I have just become some person with “oh no not that again” “are you not getting better?”.

Unless I break down in tears the pain cant be that bad, I struggle and and struggle and push myself just to do the easiest task of making dinner.

Oh if they could have it just for 1 day…

Oh, Jackie. Yes, the pain levels are comparable to types of Stage 4 cancer. If a public official did have this, wouldn’t that do us some justice, finally. I wouldn’t wish it on anyone, buy why not some high ranking official, instead of some 5-9 yr. old, little child, as happens sometimes.

Whenever you speak of your sister-in-law, it makes me think of how I want to scream when my Dad says, “Well, maybe one day we’ll figure out a way to get your jaw fixed”. Arrrghhh!!!



Jackie said:
Steph as soon as I read this title I knew you would have captured a point so many of us could relate too.
I spent a long time educating my brothers about my condition as there was talk of me having a MVD, not happened yet! They are my only living relatives outside my little family and it is brain surgery so I thought I ought.

My sister in law rang the other night and as a throw away she said- oh by the way how are your headaches Jackie?

I nearly wept! It would seem we shall never be able to tell anyone but those very close and each other here just what we endure.

You know how they say don't wish it on your worse enemy well, I wish Michelle Obama or one of our major royals would get it, then the world may be educated in just what we all suffer and have to carry on regardless with.

How sad it would take someone else to suffer to bring recognition. Sorry to say I have a dear friend in stage 4 cancer and there are comparisons but as he may not live it does not matter about the side effects of the meds on his body in quite the same way so...........