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        Supporter's Corner >> Supporter's Corner >> Silent Heroes
        
(Message started by: Annikins on Jan 12^th, 2007, 7:37pm)

Title: Silent Heroes
Post by Annikins on Jan 12^th, 2007, 7:37pm

Hardships are where we learn the most—they mold us into outstanding human beings that we would not be otherwise. Why is there such a lack of compassion, understanding, virtue and moral integrity from those who do NOT have such issues for those that DO? Would that they could experience a cluster headache for just one hour. Wouldn’t it change their lives? My son is the bravest person that I know. I suspect that many of you are heroes, both those suffering and the loving family members that are supporting sufferers. My heart goes out to all of you. I am not alone, am I? I haven’t done this web thing before, but I need someone to talk to. I am a 52 year old mom with a son age 21 who has had cluster headaches for five years now. At first they were episodic, but they became chronic three long years ago. Brett tried to live on his own when he turned 19. I was terrified that he would not be able to take care of himself. He nearly starved to death because he wouldn’t tell me he had lost another job and couldn’t feed himself. We’ve tried Varapimil, oxygen, Depakote, Imitrex injections (help sometimes), and lots of others I can’t remember at the moment. I’m not looking for medical advice, but emotional support. He recently underwent nerve surgery and we are waiting to see if it is effective. It’s just that I have given total emotional support when no one—and I mean NO ONE—else in our family has. Brett’s natural father, my fiancé, my oldest son, they all think it is in his head to some extent despite reiterating to them innumerable times that this is a physically generated problem from the hypothalamus causing an overstimulated response. Fear, anger, certainly can set it off, but are not the cause. I finally got enough support to get these men in Brett’s life to pay for surgery and can only pray that it may help. In reality, I am prepared to support Brett throughout his life. I hope to provide enough money to set up a trust to take care of him after I’m gone. The tough part just now is that a beautiful little baby granddaughter has been born, Aeryn Tiffany. Brett’s girlfriend just couldn’t take the headaches any more and kicked Brett out. Now baby (12 weeks old) and son both have moved in with me and so, of course, my fiancé is having a major “I don’t want the responsibility” attack and threatening to oust us all. Normally, even that would not phase me as I am a very strong person. Spiritually, I know that God is with me on this journey and will always be with me. I just hate the fact that I am only just recovering from major surgery myself—silicone poisoning which came from a breast implant rupture. Although my I.Q. rivals that of Bill Gates (sorry if you dislike the guy, but he IS smart), the silicone causes memory lapses. I’m also tired, down and exhausted at 6 months past the surgery. I have to follow this crazy raw juice, raw food diet and then I’m ok, but I don’t have time for all of that, Brett and working to keep my business going to pay for everything. My boyfriend has been helping since the surgery but has made it clear I’m on my own financially to deal with this. Of course, Brett doesn’t have any insurance and I have paid cash for all medication and care. There goes that retirement! No wonder my boyfriend is considering taking a hike! I’m going to submit for some grants whether I have the energy or not, going to make this work even if I have to do it myself, but……I could use some friends who understand and can say something positive about all this. Thanks for listening! E-mails welcome to anne_romney@hotmail.com.

Title: Re: Silent Heroes
Post by crftymom on Jan 12^th, 2007, 8:24pm

Welcome to you and your son. Sorry you have to be here. Encourage him to hop on here too. There is a lot of help and support for both of you through this wonderful family. I can't tell you how much they have helped me deal with son, and they too will do the same for you if you let them.
PS.. Check your e-mail.

Title: Re: Silent Heroes
Post by Broken on Jan 12^th, 2007, 9:09pm

Hang in there my friend. Things will get better. I promise. If you need I'm here for you. We all are. I know exactly where you're at. I support for 3 and it's not easy when even one is hurting. PM me if you need to talk or anything. I'm always around and there are others here that will help you when you ask. Keep your chin up, face death with a smile, fight all of hell, never go down swinging, and don't ever give up. Vibes and love on the way to you and your's.

Broken

Title: Re: Silent Heroes
Post by Annikins on Jan 13^th, 2007, 12:07am

Thank you kind Ladies for your replies. Here is a poem I wrote to express my gratitude for your kindness and support:

Marshmallow

A marshmallow,
All toasty warm and golden brown
Resting on a bumpy stick
Waiting for a hungry kid to take a lick
Could not feel as nice inside as I
When I am warmed by the fire
Of your golden,
Ever-there
Friendship.

Mary Anne

You see, I reached out and there are others. Thank you for kind words. Broken, your heart picture speaks to me. If you would like to see one like it, please e-mail me. anne_romney@hotmail.com. 'nite ladies.

Title: Re: Silent Heroes
Post by Pinkfloyd on Jan 13^th, 2007, 3:45am

I'm not an "official supporter" in the sense of the term used here, in that I don't support a cluster sufferer at home, I am the support"ed"....but just a couple comments if I may...

1. I don't think that we can consider supporters as "heroes" without that automatically making everyone else that doesn't show support, at best, as "normal."

I think there has to be three levels...
1.Heroes/angels etc (deserving a pedestal)
2.Normal folk (deserving acceptence as middle ground) (showing some empathy but not really able to fully understand)
3. Harmful/deprecating/disrespectful

Be glad for the heroes in your life, learn from them and appreciate them, for they are few, as there should be. (otherwise they'd be "normal")

Accept those that don't understand, and hope that one day they will understand and in turn, be more accepting of you. You might as well, there are billions of them.

Eliminate or ignore those that would be harmful to your persuit of happiness. 3's never become 1's

An interesting thing I noticed about your (anni) opening post. Your early description of the man in your life, was as your fiance. After you noted his lack of desire to undertake some important responsibility, he became your boyfriend.
Significant? I wouldn't dare to venture a guess or dare to presume anything since I really know nothing of the situation. I just thought it might be something you'd like to ponder.

all the best...
This can be great place for support....hope you find some peace,
Bobw

Title: Re: Silent Heroes
Post by TonyG1 on Jan 13^th, 2007, 11:07am

Anne - Welcome to this place! I noted in your comments, ..."I am not alone, am I?" The answer to that question is no. First, like Bob I am not an official supporter either but rather a member of the supported. A good supporter is invaluable !!! I am sorry you and your son are having a rough time of it.

It is unfortunate that some of the people don't or won't try to understand ; however, not everyone will understand the problem. For those non-understanders that may be hurtful / harmful; thats unnecessary if they can't or won't try to understand the condition they should reserve their opinions. How can they speak to something of which they have no concept ... :( I know that isn't reality especially when dealing with family. Remind your son to let his dad and I guess soon to be step-dad he may be the one that chooses their nursing home for them someday.... [smiley=laugh.gif] Got to find the humor when and where you can ...

Thanks for what you continue to do! Wishing you and Brett all of the best and hope you find peace and renewed strength to battle on! Never EVER, EVER give up !

Best Regards,

Tony G

Title: Re: Silent Heroes
Post by Jackie on Jan 13^th, 2007, 12:12pm

Hi Annikins.....welcome to the site.

I'm married to a CHer. We've been doing this for years. This board and these wonderful folks have saved us. We learned how to cope, new meds. that might work, techniques to try, ways to deal, home remedies, etc.

There is hope. My advise is to read, read, read. There is a wealth of knowledge here and on the OUCH website. These folks have YEARS of experience dealing and they know more than the doc.'s in some cases.
Knowledge is power......learn all you can.....try new things. The 'beast' is a smart, mean SOB so you'll just have to help your son stay after it!

Again, welcome......ask questions if you need...there is always someone here to help.

Jackie

Title: Re: Silent Heroes
Post by BB on Jan 13^th, 2007, 8:52pm

Hi Annikins

Welcome and a big hug to you. :-*

My husband is a CHer and this is his first diagnosed cycle. I can relate to you completely as his family refuses to support him or us. His own mother turned her back on him.

I sent her links to this site and several other informations and literally begged her to read them so that she would understand what her own son is going through but she steadfastly refused. Her argument was that she herself has migraine and she knows all there is to know about headaches!

His grandmother came unannounced one day to "check on us". He had a bad hit while she was here. She sent me out of the room then proceeded to try to stop him rocking by holding onto him, to try to keep him warm by wrapping him up with blankets and try to " positively talk him out of the attack" by telling him to stop moaning and to snap himself out of it !! I thought he was going to hit her ! In the end, he couldnt stand it anymore and ran out of the house. Once the hit was over, he asked her to leave and not to come back !

Your son is very lucky to have you as your supporter. Please do not be swayed by others inability/unwillingness to understand or support. You are his lifeline and you mean a lot to him. Its your love and support that will do more for him than most medications or surgeries.

Please hang in there with him. The condition can be controlled/managed and things will get better.

Hugs to you and your son.

Annette

Title: Re: Silent Heroes
Post by Annikins on Jan 15^th, 2007, 12:18pm

Thank you, everyone, for the warm welcome. :D I am feeling much better. Thank you!!! This is a great forum for information and learning and SUPPORT!

Tony G, thank you for reminding me that there is humor in all things. I found my first humor here in thinking that everyone was married to someone named CHer--some giant polygamist thing. FINALLY figured out what it really means (clusterheader) and DID laugh!!! Stress definitely affects the mind!

Jackie, thank you for the suggestion to read. I am and will. This site was my first exploration. Knowledge is power!

BB, all I can say is "WOW". Your situation makes me feel grateful for my own! People are really bizarre! Brett and I always run into the "just stop it" syndrome, too. I find the hardest people are those that have never had a migraine or anything that helps them relate. You are a wonderful person to be there for your husband. Good for you! I'm proud to know you. Let me know if I can be there for you, too.

Thank you all for reminding me of my blessings. I am grateful for this beautiful new little girl in our family. I am grateful for my indomitable spirit and that I know there will be a way to grow and learn and live through it all. I do believe with all my heart that we are here on earth to better ourselves, so I'll dig deeper for the reasons and let those less understanding live their life, too.

By the way, the counseling is really helping. I recommend a good counselor for those sorting out family situations--at least where they are willing to go with you!

May you all feel a warm hug coming back your way...

Mary Anne

Title: Re: Silent Heroes
Post by kayarr on Jan 15^th, 2007, 9:00pm

Annikins,

Hola! I am the supporter and Love of a clusterhead. All of this is very overwhelming. Your son is lucky to have you in his life.

These people are wonderful and here for you too:)

Kimberly

Title: Re: Silent Heroes
Post by TonyG1 on Jan 17^th, 2007, 7:22pm

on 01/15/07 at 12:18:02, Annikins wrote:

Tony G, thank you for reminding me that there is humor in all things. I found my first humor here in thinking that everyone was married to someone named CHer--some giant polygamist thing. FINALLY figured out what it really means (clusterheader) and DID laugh!!! Stress definitely affects the mind!

Anytime Mary Anne ! Hmm... I guess for those who have spouses with CH... in a way they are kinda married to the Demon as well.... kind of is a polygamist thing if you think about it in that way.... OR it is one of those "for better or worse" things... ;;D I suspect that is the case :)

Take Care !

Tony

Title: Re: Silent Heroes
Post by Callico on Apr 21^st, 2007, 1:05am

Hi and welcome from another clusterhead.

First of all, thank you from the bottom of my heart for being there for your son. I don;t know what I would do without my wife. As Tony said, it is a "for better or worse" sort of thing. She is waiting for the better part! ;;D

Please get Brett involved here on the board. not only reading, but participating. The support from other clusterheads is invaluable. your support means the world, but the support from another who knows what he is dealing with from the inside really helps.

I didn't note where you live, but I would also suggest you try to find a meet and greet in your area if you can and try to make the convention in Richmond this summer. Meeting another clusterhead/supporter in person is such an amazing thing. Getting to know another through dots on a phosphor screen just is not the same as meeting one face to face.

Stay strong, be encouraged, and don't forget to take the time to care for yourself. If you get yourself run down you won''t be able to support either of you!

Jerry

Title: Re: Silent Heroes
Post by sldrswyfe on Jul 10^th, 2007, 11:54am

Very insightful and wise Pink...made me "ponder" a bit...

I see Annie's point...it is frustrating to be misunderstood, not understood at all...and left for a condition you cannot help nor asked for. Im a little sensitive because I had no support system...and lost everything I had...so that explains the nature of my responses at times.

However, I've evolved into a different thinking. This disease is part of my life and that's the way it is. Period.

If someone leaves you based solely on the disease...well I don't think they're worth much as a friend or human being...they too will have their own hour of need...or decades of need...whatever the case may be.

Hang on Annie... Thoughtfully, Sherri