Tonight we went to hubby's Aunt's house for a St. Patrick's Day party.  I didn't find out until after we got in our van to leave that Jesse ended up yelling at his cousin and uncle because they started making headache jokes.  His uncle had ribbed him before about it when he went on a trip for a couple days with him and Jesse gave him a smack down then.  I just feel really bad for him that he's getting ribbed yet again. :(

I just got done with my cycle 2 weeks ago, and some of the family out here just don't get it, nor will they ever.  They act like I make my CH's up just for attention.  How the fuck can you make something like that up???  

Fuck em.  Fuck them all!  They know not what they do.  They have absolutely NO clue what it is like.  They do not live with someone who has them, nor do they get them themselves.  

And I can't help it but say; How dare they ask my husband why, after being diagnosed (a 2nd time mind you) by a neurologist do they ask why I didn't "go further" for help for them when I am already doing everything I can that works for me!  How dare they think I'm just "doing it for attention" (WTF?)!  How dare they not even say all this shit TO MY FACE!!!  Fucking cowards. >:(

Even though I am a strong person, IT STILL HURTS!!  It hurts to be played, it hurts to be lied to and it hurts to have lost something you thought you once had...a good friendship.  Guess one thing that CH's find out for you is who your friends REALLY are. :-[

I hate this disease.  I hate what it does to my family and I hate how lonely it can be when the only ones who understand are the ones you live with and all you guys.  

I wish we all lived in the same community :(.

I'm sorry for the vent everyone, but this just really struck my nerves tonight.  

love you all,
me

Melissa am so sorry what happened to you and yours some people just dont understand and can be mean sending you enough hugs for you and yours Terry

Take a deep breath Mel.  Stress can cause a ch. Yes, we all hate this disease. And yes, we all have relatives that just don't get it.

I can only add that we love you here. We get to PICK out friends, unfortunetly we don't get to pick our relatives.

Go to sleep and relax. You are loved by many. :)

I feel so bad for my husband, he doesn't need that crap on top of what he has to go through already with me!!! :'(


btw, I told him if they bring anything up again about it, he is to direct them TO ME or not even respond!  

[smiley=hug.gif]

Mean people suck. >:(

Joe

Mel, I'm so sorry your outside family doesn't get it. I hate that they crack jokes like this is some trivial thing we have. Remember, Jesse loves you, just the way you are. :) And we do too.  [smiley=hug.gif]

And what Jimi said. We can pick our friends...

Try to get some rest, and forget about those guys. The ones that matter are in your house right now.

Love you.

I am so sorry Mel to hear how mean those people are to you. I know how upsetting it is for Jesse too because I have been in his shoes. I had been asked the same questions by relatives on both sides of the family. I was asked why didnt Daniel stay in hospital to get his headaches "fixed" if they were really that bad. I was even blamed at times to be the cause of the headaches ....

You know what though ? As a supporter, I was upset not for myself but for Daniel and I was always ready to take on the world for him ... and I did .... and I still do. I am sure Jesse feel the same. He loves you and as your husband and supporter, he would stand up for you willingly, time and again.

Now take care, do something really nice for yourself, mean people dont deserve your time and effort.

HUGS

It's not a headache.      

You know it, and I know it.  We know it.  They don't.  They never will.

It's a place they don't understand, and we can't show it to them.  If they could be made to feel even the merest whiff of it, it would change their lives, as it has changed ours.  

Hell, to many people, is a theory--but we know what the bones of hell are made of.

They don't.  If they did, they'd never say another word about it.

All my best to you, Mel.  

George   [smiley=hug.gif] 

Melissa,
        First let me start with, "People that don't haveheadaches like this will never understand the intensity of the pain"
        You, My Friend are a wonderful,Sweet and Compasionate soul and I know you hurt for everyone as well as for yourself!
 
         Here is my suggestion, go buy a large "Slurpee" for each of the people that dont understand, make them drink it as fast as they can untill they get a good brain freeze!  then make them keep going for a few seconds!
        After they can think, ask them how it was and then as what if you had added a "white hot sword stuck through their head, that should bring about a minor understanding, then tell then how long that pain last with a cluster!
        If they still don't get it the -----in your words--"Fuck it" its not worth waisting your down time on trying to make the blind see!
        You are without a doubt one of my favorite friends here and I just wanted to let you know I had to shut down my "FaceBook for a while, I just didn't have the time for it right now, I will reactivate it soon so I can stay in contact with all of my Facebook friends,   Hold your head up High Sweetheart! You have touched more people on this board than you could ever imagine and I Love You for it!     John

Have you tried showing them the videos of Chuck? I know that might not do a LOT of good, but maybe if they could see...

The only thing I have trouble explaining how bad this is, and making people understand, is some doctors. The way I solved that problem was by making sure that any doctor who does not 'get it' will see me having a cluster.

My family, and friends have all understood this, due to my chronic health issues. But if any of them HAD said anything about it? I'd have done the same thing. Forgive my language, but, that is my way of saying "FUCK YOU!" to anyone who CAN'T understand how bad this shit hurts!

Do people think this disease is nicknamed suicide headaches for NO REASON? D:

Why would you care what those people think? They all sound like a bunch of a$$holes.

You are better than that.

As difficult as it is to do... try having some fun with their stupidity. Although we know that these headaches are no joke and not a laughing matter....stupidity can be laughable and sometimes humor will diffuse stress as well as enlighten.

I'll never forget the time my sister... god love her... told me that my headaches were a gift from god..... that they were his way of showing me how much he loved me.. by giving me a pain similar to what jesus suffered on the cross....and that I should offer my suffering up to jesus and be grateful that god chose me to bestow such a special sign of love.

after I prayed for a moment.. god gave me the strength to constrain myself from slapping her halfway to heaven...

I told her that from this moment forward... my most fervent prayer would be for god to show her how much he loved her in the form of 12 ch attacks a day and if he felt like it... perhaps he could throw in some leprosy and a titch of ebula.
and then after a weeks worth of that... please see to it that she became stupid enough to believe that god hurts people to show that he loves them.

Why wouldn't I want her to feel "special"?

with warm regards,
Tony

Artonio wrote on Mar 15^th, 2009 at 4:49am:

Why would you care what those people think? They all sound like a bunch of a$$holes. You are better than that. As difficult as it is to do... try having some fun with their stupidity. Although we know that these headaches are no joke and not a laughing matter....stupidity can be laughable and sometimes humor will diffuse stress as well as enlighten. I'll never forget the time my sister... god love her... told me that my headaches were a gift from god..... that they were his way of showing me how much he loved me.. by giving me a pain similar to what jesus suffered on the cross....and that I should offer my suffering up to jesus and be grateful that god chose me to bestow such a special sign of love. after I prayed for a moment.. god gave me the strength to constrain myself from slapping her halfway to heaven... I told her that from this moment forward... my most fervent prayer would be for god to show her how much he loved her in the form of 12 ch attacks a day and if he felt like it... perhaps he could throw in some leprosy and a titch of ebula. and then after a weeks worth of that... please see to it that she became stupid enough to believe that god hurts people to show that he loves them. Why wouldn't I want her to feel "special"? with warm regards, Tony

I love Jesus' and all, but I don't want to be loved by him THAT MUCH!  :-?

Sorry Mel...some people just won't ever get it.  But at least we have our family here to come to for love, understanding and support.

Perhaps they need to read the "colleage letter".  And even then they just won't get it.

Hugs,
Langa

Mel, nobody else really "gets it" but us who suffer from it. Angie say's to me over and over " I see your pain but I do not know what it feels like" nor do I ever want her to.

I can't imagine how badly this made you and jesse feel, and tell him for me how proud I am of him to be in your corner.

As far as the comments from the "joke heads" ignore it. It is not worth the effort with them. Sounds like they have some major issues of their own, the big one for them is understanding human compassion.

This has struck a nerve with me the way you were a victim of someone's cruelness, and they will pay the price for that someday.

I also wish we could all be together in a community or on that Island we talk about. But until then, we continue our march ahead and keep our chin up  to face the next hurdle.

Keep smiling girl, your cycle is over and last night is behind you! Oh, also, you have all of us on your side, just to mention. ;)

Melissa wrote on Mar 15^th, 2009 at 12:24am:

I wish we all lived in the same community :(.

We do Mel.  It's just spread out a little.

Some people will never get it.  I'm sorry they've turned indifference into antagonism.  The former is easier to deal with.  The latter is hurtful and unnecessary.

I'm glad to see your husband is in your corner though.  Remember, we all are too...

-Dennis-

It was so hard to fall alseep last night, but inbetween the tears I must have somewhere.

Jesse kissed me goodbye this morning at 5:30 and I've been up since then because I couldn't fall back to sleep.  So, I decided to go online and I am glad I did.  The tears have been flowing since reading everyone's posts and I am glad.  I need this.  I am crying because I am releasing the sadness, the anger and the hurt.  I also have a new mission, and that's to get to the convention come hell or high water!!

I love all of you so much!!!! :'( :-* :-* :-*

Melissa wrote on Mar 15^th, 2009 at 7:47am:

I love all of you so much!!!!

Even ME??

Awwww ....

Ya KNOWZ I luvz you!!!

Chuckiepoo

We had friends who were scientists - they kept saying that there "had" to be a treatment/cure that Brew hadn't found yet.

We had friends that were very religious - they offered to pray and that God would heal.

People who don't have or live with CH have no clue and are doing their best to make it fit into their own world view.  They may have the best intentions, but you know what they say about the road to Hell . . . .

We keep to ourselves for the most part so we don't have to deal with this crap.

Awww Melly - remember some people are simply a waste of skin and not worth your shedding tears over, honey.

Sorry you had to deal with all of that crap.

Sending you hugs.
Carol

It's so hard to make people care and understand. There is plenty of information that clearly spells this out IF people want to understand. I think some people just lack the abilty to show empathy whether it's CH or many other diseases. It's not a part of their world and they aren't going to allow it to be.

I'm sorry your family has hurt you so much. We want to be a part of our family  but sometimes it just doesn't happen. The CH family is all here for you though.  (((HUGS)))

Charlotte

We love you, Mel. :-* :-* :-* :-* :-*

A man with no arms walked up to a bar and asked for a beer.

The bartender shoved the foaming glass in front of him.

"Look," said the customer, "I have no arms - would you please hold the glass up to my mouth?"

"Sure," said the bartender, and he did.

"Now," said the customer, "I wonder if you'd be so kind as to get my handkerchief out of my pocket and wipe the foam off my mouth."

"Certainly." And it was done.

"If," said the armless man, "you'd reach in my right hand pants pocket, you'll find the money for the beer."

The bartender got it.

"You've been very kind," said the customer. "Just one thing more. Where is the men's room?"

"Out the door," said the bartender, "turn left, walk two blocks, and there's one in a filling station on the corner."  

  I live it every day.  Ya just gotta laugh at the fools

        Kinder gentler Potter

Some people will never get it Mel.  The meaness is so unnecessary.  I hate hearing of anyone who has ch getting hurt from thoughtless cruelty by those who should be supporting, or, at least, trying to understand, instead of adding to the pain.

We will always be here for you Mel!  Looking forward to seeing you in St. Louis!

Love & Hugs
Beth

Melissa wrote on Mar 15^th, 2009 at 7:47am:

The tears have been flowing since reading everyone's posts and I am glad.  I need this.  I am crying because I am releasing the sadness, the anger and the hurt.

It's the only way - the only way - to cleanse the soul.

Brew wrote on Mar 15^th, 2009 at 11:20am:

Melissa wrote on Mar 15th, 2009 at 7:47am: The tears have been flowing since reading everyone's posts and I am glad.  I need this.  I am crying because I am releasing the sadness, the anger and the hurt. It's the only way - the only way - to cleanse the soul.

Laugh Melly Laugh.

   Potter

Well, besides what everyone else has already said...THIS jumped out at me:

 
Quote:

Jesse gave him a smack down then.  I just feel really bad for him that he's getting ribbed yet again.

Why?  Isn't that what husbands are supposed to do for the woman they love?  Isn't it the same exact thing you would do for Jesse if the situation was reversed?  Don't feel bad for him.  He's being a good husband and doing what he's supposed to do.

Have another good cry and then go laugh at Potter.  ;)

Potter wrote on Mar 15^th, 2009 at 11:26am:

Brew wrote on Mar 15th, 2009 at 11:20am: Melissa wrote on Mar 15th, 2009 at 7:47am: The tears have been flowing since reading everyone's posts and I am glad.  I need this.  I am crying because I am releasing the sadness, the anger and the hurt. It's the only way - the only way - to cleanse the soul. Laugh Melly Laugh.    Potter

Yep, Potter and Linda are right - Once it's cleansed, it's then time to feed the soul with laughter.

Thanks everybody.  I'm feeling much better now about it all, and once again you've helped!  I hope I do the same for you all here, and if I'm lacking in that department, I plan to step up more. :)

LYG!

[smiley=hug.gif], Don't waste your energies. Smile at them when you can, It'll drive em bonkers. Andrew.

Now I KNOW I have to make it to convention this year!  I've been wanting to meet you for the longest!  Bring Jesse too!  I want to meet the man who had the sense to choose you, CH and all.

I know they are family and all, but I have had to forgo some of the family get togethers that I used to look forward to.  Since going chronic it just is not worth the hassle of dealing with them.  I love them very much, but I don't have the time and energy to deal with their willful lack of understanding.  My closest friend is a Viet Nam vet who was terribly wounded in Nam.  He is one of the few who has ever seen me get a bad hit.  He had the sense to just keep his mouth shut and give me space, but then he has been through his own share of Hell on earth.  Other than him I have no real friends other than on this board.  Until I can meet you in person to give you the hugs you have earned from me you will have to settle for this: [smiley=hug.gif]

They may have the blood ties, but here you've got FAMILY!

Jerry

Well, Sweetie.....there is no explaining some people's ignorance.  You know, Jesse knows and we know.  We understand......to heck with them.  Hard as it may be, take them with a grain of salt.   [smiley=moonwiggle.gif]

We love you, Melly...a bunch.

Jackie

Love you, MELLY!   [smiley=hug.gif]

Jeannie

So sorry to hear this Melissa
I couldnt agree more.Ch reveals who are our true friends.
hope you are better now [smiley=hug.gif]

Mel,

I've thought myself on a few occasions that ch is a great way to find out which friends (and potential partners) are your true friends.

I'm so sorry about what you had to face. Family is always harder, because they stick around. I wish I had some wise words and advice to share, but this time I'll just send you lots of good thoughts and hugs and I'm so glad that your last posts revealed that you're already feeling better about it all.

Lots of hugs,
Sanna

No one in my family, other than, my son, daughter, and my wife have ever understood these headaches. I have 3 brothers and a sister, I have tried to educated them, but I have given up. That is probably why I ended up here. Which is the best move I ever made.

                                  Lee

It makes me sad and angry reading this Mel. People can be so clueless.

Recently I had someone that knows me well ask how the headaches were doing... I told them my hormone deal and he shot back quickly that having belief in the hormone treatment is what makes it work because most headaches are psychological.... dumb ass jerk!

I no longer have any respect for this person, but i realize that so many people are just clueless and stupid when it comes to health issues. I now keep my mouth shut about my treatment to everyone except other CH patients and doctors.



Paul

Oh Paul, one thing that grates on my nerves is the whole "hormone" thing!  I get that too. :(

To all:  I was able to get over my hurt and anger about the whole thing by the end of Sunday due to you fine people.  I think if I didn't have the support of each and every one of you, I would have probably stewed about it for quite some time (and I'm usually not one to hold a grudge!).

Hubby's relatives were being jerks at my expense.  No matter.  They have many more problems in their own lives to the point where thier own happiness is in question.  Unfortunately for them, when they try to pick apart someone else to not deal with their own shit, they picked the wrong person.  Idiots.

Anyway, love you guys SO SO much!  Thank you again! [smiley=hug.gif]

:)

Melissa wrote on Mar 17^th, 2009 at 7:32am:

They have many more problems in their own lives to the point where thier own happiness is in question.

Misery loves company, and they were - consciously or subconsciously - trying to suck you down into their abyss of despair. You wouldn't let 'em. Good on ya, Mel.

Melissa wrote on Mar 15^th, 2009 at 12:24am:

Fuck em.  Fuck them all!

thats right honey fuck 'em. if they don't understand what a ch feels like hit 'em in the face with a fuckin baseball bat then ask how it feels. then on the way to the hospital you can comment about what big pussies they are because a concussion isn't that big a deal.

i really don't understand how somebody can watch someone go through that much pain and make jokes about it, especially family. anytime you see a grown man cry like that you should concerned if not totally scared shitless.

I'm so sorry Mel. It sucks when your own family doesn't "get it." For them to joke about clusters shows that they need to get on that fukken yellow brick road and go find a heart! That's just beyond callous and shameful. I'll never understand those who mock other's sufferings. Just know you're not alone.

My brothers are very... well, I never hear from one, and the other... it's not his problem so he shouldn't have to deal with it, and doesn't want to hear about it. It's got old after 21 years.
For years everyone thought I was exaggerating the pain... and then 10 years ago next month, a friend found this site. I went to my brother's house, brought it up - and back then it was pretty much straight cluster talk since the board was fairly new. My sis in law started reading posts, and then starting crying. I asked her what was wrong and she said, "If I didn't know any better, I'd think you wrote every one of these posts." That was when she 'got it.' She's been the only real supporter in my family.

For them to joke about clusters shows that they need to get on that fukken yellow brick road and go find a heart!