I could just kick myself!!!

[RedFlame]

I could just kick myself today.  I woke up with a terrible stomach ache, most likely from the handfulls of Ibuprofen, Tylenol and Nuprin that I take along with my Tramadol, Neurontin, and Flexeril.  

I go to the kitchen sink where I apply cold compresses to my face.  My 'much loved sister  asks "is that a side effect or something".  Not knowing what she is referring to I just say "no".  

After I get online here on the forum (where I go first thing every morning) I make the mistake of saying "sometimes I feel like I am the only one who has never been treated for their Chiari".  The gates of hell seem to open up and my sister starts to talk with a disgusted voice then stops herself several times.  FInally she yells, "but how long have these other people been on this forum?",  I am just dumbfounded----I say "I guess longer than I".  

Silly me, I didn't know membership to a forum was pre-requisite to treatment.

Why can't I remember to keep my big mouth shut?  Why do I continue to struggle with not talking about it?  I don't understand why the people around me can't validate my struggle.  

I just wish I was better at all of this!   Does this happen to you guys too?

[*Stormy*]

Right back at you too :)

Like Selma says...we all have each other..and that means the world to me!

Carolyn

[RedFlame]

Hi Carolyn, Thank you so much for responding to my post.  It means so much that all of us are together.  I need to do the same as you as in giving up trying to make people understand.  I wouldn’t want others to have this!  

I’m sorry that your husband doesn’t understand.  That has to be tough with him being your closest relationship.   I know that people can’t fully understand because they haven’t experienced this, but still it hurts at times.  I just feel like they think I am nuts.  

As far as time here on the forums, no one in my family knows that either.  They would probably think that it was a negative thing.  

Hi Selma, I’m sorry that you have had this same type of treatment.  It does hurt.  It’s like we have to put on armor before talking to someone.  As far as the mis-information I know what you mean my sis talks to another family who come up with ways to minimize or blame me.  At least that’s how I feel.  I’m sorry that it has taken you so long to finally be diagnosed!  That is just downright horrible!!  

I know there is no prerequisite, it was just another odd insinuation.  
\
I am sooo glad that we have each other!!

lois
hugs to both of you

[selmaS]

HI Lois....not since my dx have I had this except at work....when I was on leave, the boss kept making snide remarks...I didn't like him so I didn't care.
But when it is  someone u care about and thought cared about u, it hurts.

But as I tell all members with this issue...we can not expect family, friends or co-workers to understand what many NS's don't....if they were to go online and read some of the misinformation out there...it will only seal the deal of disbelief.

As for ur sister u can tell her I have searched since I was in grade school for answers....and it took until I was 47 to get my dx and another yr to get surgery.....there r some that pop on not sure what is wrong go to the drs get dx'd and have surgery in less than 6 months.....

there is no prerequisite for who, when and why someone gets surgery.

One thing u do have tho...US !!!

We understand and care how u feel : )

"selma"

[*Stormy*]

Yes all the time...

Before or after surgery...I still struggle with this. People just don't understand whether they are friends, family or well meaning strangers. I have given up trying to get people to understand...b/c the only way they could is to be walking in my shoes. It also makes me realize that I will never again think that I know what it is like when other people are dealing with a chronic condition.

The other day my DH comes home and says "so and so was asking about you today and I just don't know what to say. I can't say that you are doing well b/c you tell me that you are still struggling...so I don't know what to say and it makes me feel like an idiot b/c it sounds like I don't even know how my own wife is feeling." And I'm thinking BINGO...you don't know..but I know it's not his fault. I also am the master of continuing on with doing things despite the pain so really, how can I expect him to understand?

So in a long about way...you can drive yourself nuts trying to validate your struggle to others...or you can just validate it to yourself...after all, they don't do brain surgery over nothing...

If they don't want to understand it...then there is no way you can make them. OH and BTW..no one in my family realizes that I spend the kind of time I do on the site...or I'm sure they will think it "influences" me somehow..

Carolyn