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Topic: I CAN'T TAKE MUCH MORE (Read 1287 times) |
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RACH
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HOW DOES A FAMILY SURVIVE THIS CURSE?? WE ARE IN OUR 18TH YEAR OF THIS LIVING HELL!! WE HAVE DONE EVERYTHING KNOWN TO CLUSTER PATIENTS AND NOTHING RELIEVES HIS PAIN! I AM THE WIFE OF A CH AND NOT REAL SURE IF I WANT TO CONTINUE WITH THIS PAINFUL LIFE. MY KIDS ARE MORE WORRIED THAN EVER CAUSE THEY ARE OLD ENOUGH TO SEE THE GRUESOME DETAILS. PLEASE LET ME KNOW HOW TO CONTINUE BEING THE LOVING & SUPPORTIVE CARE TAKER THAT I AM WHEN I CAN'T STAND BEING AROUND HIM!!! HE IS SO PATHETIC AND IN SUCH PAIN AND NO ONE UNDER STANDS BUT ME. HE TOLERATES EVERYONE AND I OPEN MY MOUTH AND HE BITES MY HEAD OFF. I DON'T THINK I WANT TO LIVE IN THIS CLUSTER WORLD ANYMORE, BUT WHO WOULD? DO I LEAVE HIM TO SUFFER ALONE? I DON'T HAVE MUCH ENERGY LEFT. PHYSICAL OR EMOTIONAL. I DON'T THINK ANYONE UNDERSTANDS HOW HARD IT IS TO LIVE WITH SOMEONE YOU LOVE THAT IS GOING THROUGH THIS TOTAL HELL! THE EFFECT ON THE REST OF US IS DEVISTATING AND I AM TIRED OF TRYING TO EXPLAIN THE ILLNESS TO FAMILY AND FRIENDS. PASSING BASEBALL WITH YOUR SON SHOULD NOT RESULT IN SUCH A SLEEPLESS NIGHT!! PLEASE HELP!
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Jonny
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Re: I CAN'T TAKE MUCH MORE
« Reply #1 on: Apr 24th, 2005, 12:22am » |
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on Apr 24th, 2005, 12:04am, RACH wrote:| LOVING & SUPPORTIVE CARE TAKER THAT I AM |
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You may want to re-think that part 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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BobG
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Re: I CAN'T TAKE MUCH MORE
« Reply #2 on: Apr 24th, 2005, 12:23am » |
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I see you registered on this site about 3 years ago and you have only posted 4 times. Forgive me but I don't remember if you've told us about your husband, what meds has he tried, what are his symptoms?
Sorry his pain has caused strains in your home. Believe me, you are not the first to feel the way you are.
Please tell us some more about your husband, yourself and the children.
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forgetfulnot
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Re: I CAN'T TAKE MUCH MORE
« Reply #3 on: Apr 24th, 2005, 12:29am » |
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R wrote
Quote:| WE ARE IN OUR 18TH YEAR OF THIS LIVING HELL!! |
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There are drugs, many drugs legal and not so legal that help many people live almost normal lives. Read all the info on this site and ouch and you too could beat the beast.
Lee
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| « Last Edit: Apr 24th, 2005, 12:49am by forgetful » |
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BikerBob
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Re: I CAN'T TAKE MUCH MORE
« Reply #4 on: Apr 24th, 2005, 12:32am » |
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on Apr 24th, 2005, 12:04am, RACH wrote:| PASSING BASEBALL WITH YOUR SON SHOULD NOT RESULT IN SUCH A SLEEPLESS NIGHT!! |
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Is baseball a trigger for your husband ? Are you ?
Bob
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| « Last Edit: Apr 24th, 2005, 12:39am by BikerBob » |
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Jonny
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Re: I CAN'T TAKE MUCH MORE
« Reply #5 on: Apr 24th, 2005, 12:38am » |
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I was watching, she hung around till we started posting to her and she took off....go figure
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Sean_C
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Re: I CAN'T TAKE MUCH MORE
« Reply #6 on: Apr 24th, 2005, 1:24am » |
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on Apr 24th, 2005, 12:04am, RACH wrote:
I'll be at the bar 
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judkins
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Re: I CAN'T TAKE MUCH MORE
« Reply #7 on: Apr 24th, 2005, 1:42am » |
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DO I LEAVE HIM TO SUFFER ALONE? I DON'T HAVE MUCH ENERGY LEFT. PHYSICAL OR EMOTIONAL. I DON'T THINK ANYONE UNDERSTANDS HOW HARD IT IS TO LIVE WITH SOMEONE YOU LOVE THAT IS GOING THROUGH THIS TOTAL HELL! (sorry..not sure how to use quote)
Rach....there are many of our supporters that are drained emotionally and physically..and I believe their suffering is as real as ours.
Maybe it would have helped to have posted on the boards earlier and got some support from these guys before you got to breaking point.
My supporter is golden and if she had written a post like this I would be gutted.
Rach..how old are your children? They may understand more than you think if they are old enough for an explanation of what is happening to their daddy. It's when they don't know whats going on that they get scared.
Maybe there are other problems that you can't post on the boards.
I pray that you can find the strength to sort this out.
Does your husband ever visit the boards?
It may help him to speak to fellow clusterheads.
Everybody understands Rach..it's bloody hard!!!!
For sufferers and supporters alike.
Good luck to you and your family.
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Todays agenda..... get through it !!!!
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sandie99
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Re: I CAN'T TAKE MUCH MORE
« Reply #8 on: Apr 24th, 2005, 7:40am » |
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CH happends, Live anyway! PF days to us all!
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marty
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Re: I CAN'T TAKE MUCH MORE
« Reply #9 on: Apr 24th, 2005, 8:06am » |
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on Apr 24th, 2005, 12:04am, RACH wrote:| WHEN I CAN'T STAND BEING AROUND HIM!!! HE IS SO PATHETIC AND IN SUCH PAIN AND NO ONE UNDER STANDS BUT ME. HE TOLERATES EVERYONE AND I OPEN MY MOUTH AND HE BITES MY HEAD OFF. |
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Let's hope that you are just frustrated and tired and it is okay to vent here (and not to your husband during an attack) if that's the case.
My ex-wife called me pathetic to from time to time and she told me this during attacks - and she is lucky to still have her head intact since I to, tried to "bite it off".
CH interferes with a normal social life and that becomes frustrating and it strains any relationship.
Ask your husband to post or just read all the info on this website, maybe there is something here (meds or advice) that can help him.
Marty
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| « Last Edit: Apr 24th, 2005, 8:20am by marty » |
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don
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Re: I CAN'T TAKE MUCH MORE
« Reply #10 on: Apr 24th, 2005, 9:17am » |
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Quote:| WE HAVE DONE EVERYTHING KNOWN TO CLUSTER PATIENTS AND NOTHING RELIEVES HIS PAIN! |
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Such as?
Quote:| I CAN'T STAND BEING AROUND HIM!!! |
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I'm guessing the feeling is mutual.
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BarbaraD
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Re: I CAN'T TAKE MUCH MORE
« Reply #11 on: Apr 24th, 2005, 9:37am » |
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Rach,
You're going thru the same thing that other supporters have been going thru for years.
One thing you might try is getting together with other sufferers and Clusterheads. I watched the face of a supporter one day during a get-together and he was totally amazed that others go thru the same thing as his wife. I think it dawned on him that he was not alone anymore either.
I agree that you should explain to your children that daddy has a bad ailment and sometimes acts "funny". Most of us who suffer don't mean to be cruel or hurtful during an attack. Personally I just want to be alone and anyone getting in my space is subject to total abuse (most of my family and friends understand this NOW).
There are new drugs coming out daily that are helping CH patients. Go to the left and read up on the new remedies. What didn't work a year ago MAY work now. You just have to find the right combination of meds and that takes trial and error until you find the right one.
I can feel for you because I take care of an ex-husband who is a stroke patient. I watched him go from a brilliant engineer to a three year old. It's not easy, but you do develop patience over a time. There are times when he's perfectly lucid and other times when we're in space cadet school. I'm thankful for the good days and tolerate the bad ones.
This board is a good place to vent when things get too bad. Use it. And when he's not hurting - encourage him to come on and post or just read. the "aloneness" is the biggest problem most of us face. I've been chronic since 97 and without this board I don't think I'd have survived.
Good luck to you and your family.
Hugs BD
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bigred
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Re: I CAN'T TAKE MUCH MORE
« Reply #12 on: Apr 24th, 2005, 9:44am » |
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Rach
Im a single dad with a 10 year old girl and a !4 year old boy, Im a cronic CH sufferer and I play softball with one and baseball with the other.
The mother left us 5 years ago because she couldnt "take it no more." Unfortunatly she left and I still got the headaches  . I had to rule her out as the cause 
Since I found this sight in january,I have gotten a great doctor, put on verapimil, and been introduced to imitrex. "thanks guys." MY and the kids life are on the upswing.
Why dont ya come along for the ride. Tell us your full story and maybe we can help.
Or you can take the cowards way out and be like my Ex. Spineless.
Bigred
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Jonny
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Re: I CAN'T TAKE MUCH MORE
« Reply #13 on: Apr 24th, 2005, 10:39am » |
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Good for you, BigRed......I love hearing stories where things come together for a CH'er!!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Sean_C
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Re: I CAN'T TAKE MUCH MORE
« Reply #14 on: Apr 24th, 2005, 12:01pm » |
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on Apr 24th, 2005, 9:44am, bigred wrote:| Since I found this sight in january,I have gotten a great doctor, put on verapimil, and been introduced to imitrex. "thanks guys." MY and the kids life are on the upswing. |
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I often wonder if my life would have been different if I had somewhere to go like this 25 years ago.
Cheers to you Red 
Sean..............................
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maffumatt
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Re: I CAN'T TAKE MUCH MORE
« Reply #15 on: Apr 24th, 2005, 12:34pm » |
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HE IS SO PATHETIC AND IN SUCH PAIN AND NO ONE UNDER STANDS BUT ME.
We understand-that you dont-understand.
I think that you should wait awhile before you show him this site. If my wife wrote this post... well ...she wouldn't be my wife.
I DON'T THINK ANYONE UNDERSTANDS HOW HARD IT IS TO LIVE WITH SOMEONE YOU LOVE THAT IS GOING THROUGH THIS TOTAL HELL!
Do you understand what its like to be in his shoes?
Perhaps I am being harsh, but I doubt it. Try posting in the supporter corner, you might get more sympathy.
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kimmeesue
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Re: I CAN'T TAKE MUCH MORE
« Reply #16 on: Apr 24th, 2005, 5:29pm » |
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In 1990 my husband married a woman with three sons. He didn't bargain for A wife with lupus and CH, a stepson (he never uses the step part) with extreme ADHD requiring all kinds of counseling, out of home placement in another state requiring almost weekly trips,: another, with abandonment issues involving his bio father which he took out on my husband and caused all kinds of legal turmoil, multiple DUI's and wrecks, huge hospital bills, inpatient psych treatment, alcohol and drug treatment...;and the third who was the typical "good child" excelling in everything who's dad never missed an athletic event, award ceremony, teachers conference. When he signed on for better or for worse he wasn't bargaining for quite such an imbalance.
Today he has one son with a nursing degree and in Chiropractic school, another studying bio-engineering, and the third married successfully and in college. A wife who's lupus and CH have renderd her disabled and at times pretty damn pathetic, I'm sure.
Has he EVER, EVER, EVER made me feel that way?
FUCK NO!!! He makes me feel like being part of my life is a privelege and an honor. Like our sons are the best thing that ever happened to him
So my advice to you is do him a favor and hit the road. Sounds like you would be reducing his pain. Don't think he doesn't know how you feel. Us CH'ers are a pretty smart bunch. He knows.
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bigAl
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Re: I CAN'T TAKE MUCH MORE
« Reply #17 on: Apr 24th, 2005, 8:02pm » |
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on Apr 24th, 2005, 12:04am, RACH wrote:| I OPEN MY MOUTH AND HE BITES MY HEAD OFF. |
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Is he a lawyer?
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>>>------- >>>------- >>>------- Once I thought I was wrong, but I was mistaken.
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RACH
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Re: I CAN'T TAKE MUCH MORE
« Reply #18 on: Apr 25th, 2005, 9:52am » |
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MAN, SOME OF YOU ARE HARSH. I GUESS I SHOULD NOT HAVE POSTED AFTER SUCH A ROUGH WEEK! PB HAS HAD CH SINCE 1987, WE DID ALL THE MRI'S AND CAT SCANS AND HIS DR. HAD HIM ON THE STUFF THAT CAUSES REBOUNDS FOR ABOUR 5 YEARS, (CAN'T REMEMBER THE NAME) THEN WE STARTED SEEING A NEUROLOGIST, WE TRIED OXYGEN, BLOOD PRESSURE MEDS, LITHIUM, ETC.... NOTHING HELPED EXCEPT STERIODS TO STOP THE CYCLE. THAT USUALLY DOES WORK, BUT HE WON'T TAKE IT UNTIL HE HITS ROCK BOTTOM. HE DID LAST WEEK, SO HE HAS DONE WELL FOR THE PAST FEW DAYS. ANYWAY, WE STARTED GOING TO A PAIN CLINIC LAST FEB. AND STARTED ON BOTOX INJECTIONS. WE THOUGHT IT WAS THE ANSWER UNTIL THE CYCLE STARTED. NO LUCK. PAIN CLINIC REFERRED US TO ANOTHER NEURO THAT ONLY TREATS HEADACHES, THEY HAVEN'T CALLED YET!!
WE HAVE 2 WONDERFUL CHILDREN! JT WILL BE 13 IN MAY AND SJ WILL BE 10. WE HAVE EXPLAINED EVERYTHING TO THEM AND THEY HAVE READ SOME OF THE RESEARCH THAT I HAVE DONE. THEY ARE EDUCATED ABOUT CH BUT IT IS STILL HARD ON THEM. THANKS FOR PROVIDING A PLACE FOR ME TO BREAD DOWN, WE ARE BETTER NOW. I WILL KEEP IN TOUCH THOUGH, THIS IS A WONDERFUL WEBSITE AND I APPRECIATE HAVING A PLACE TO GO. I HAVE TRIED TO LET HIM SEE EVERYTHING THAT IS OFFERED HERE, BUT HE CAN'T TALK ABOUT IT AND HAS NEVER BEEN THE ONE SEEKING INFO. WHEN HE ISN'T IN A CYCLE, HE WON'T TALK ABOUT IT EITHER. THANKS AGAIN AND I AM SORRY IF I OFFENDED ANYONE, I DIDN'T FOR YOU ALL TO TAKE MY POST THE WAY YOU DID. I TRIED SUPPORTERS CORNER AND COULDN'T GET ON.
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Margi
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Re: I CAN'T TAKE MUCH MORE
« Reply #19 on: Apr 25th, 2005, 10:06am » |
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Rach, I read your post on the weekend and took some time to think how to answer you. I hope you haven't left here because this honestly could be your lifeline if you are to survive life with a clusterhead. Hear me on this, ok?
I, too, am an 18 year supporter - my husband, Mike has been an episodic clusterhead for as long as I've known him. He's in cycle right now, just passing the four month mark of this cycle. Life, as we know it, grinds to a halt when a cycle visits. There are some things you've said here, that I really need to comment on. I used to chair the Family Services Team for OUCH and I've talked to literally hundreds of supporters who have hit the same wall you're hitting right now. Rach, we've ALL hit that wall - it's how we decide to bounce that's key to survival.
on Apr 24th, 2005, 12:04am, RACH wrote:| WE HAVE DONE EVERYTHING KNOWN TO CLUSTER PATIENTS AND NOTHING RELIEVES HIS PAIN! |
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ok, let's start at square one here.
What meds is he on? Does he use oxygen? Has he been diagnosed by a cluster knowledgeable neurologist? Humour us and tell us his symptoms? The reason I ask this is that there are many misdiagnoses out there and if they are medicated with cluster meds, not only is it dangerous but usually counterproductive.
on Apr 24th, 2005, 12:04am, RACH wrote:| PLEASE LET ME KNOW HOW TO CONTINUE BEING THE LOVING & SUPPORTIVE CARE TAKER THAT I AM WHEN I CAN'T STAND BEING AROUND HIM!!! |
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Well, this one comes down to asking yourself a question. Do you love him? If the answer is yes, then you've got to find a way to work together to get through this. If the answer is no, then you have to decide if you're ready to make a change. Are your children ready? Is your husband ready?
on Apr 24th, 2005, 12:04am, RACH wrote: HE IS SO PATHETIC AND IN SUCH PAIN AND NO ONE UNDER STANDS BUT ME.
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ok, this one pisses me off a lil bit. Walk a mile in his shoes, honey. How would YOU be perceived if you were repeated hit with this pain, day and night, and know that you have a condition for which there is no cure? Would the adjective "pathetic" be used to describe you? How would you feel about being labelled like that? Take a step back and find the perspective you need here. He's not pathetic. He's a man in pain that is horrific.
on Apr 24th, 2005, 12:04am, RACH wrote:| HE TOLERATES EVERYONE AND I OPEN MY MOUTH AND HE BITES MY HEAD OFF. |
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well, what are you saying when you open your mouth? Are you reminding him that he's "pathetic"? I'd bite your head off, too, if you told me that.
on Apr 24th, 2005, 12:04am, RACH wrote:| I DON'T THINK I WANT TO LIVE IN THIS CLUSTER WORLD ANYMORE, BUT WHO WOULD? |
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Do you think your husband does? Consider for a moment his perspective of you. It could very well be that you do have an option to exit the "cluster world" and that you're very close to exercising it. He doesn't have that option. That could really be adding to the tension. I'm betting his 'tude would change if you showed him that you're willing to commit to working with him to find him his best treatment options. They DO seem to be different for everyone. Cluster pain IS manageable - to date, we've learned of 4 distinct plans that help - the rub is finding which one works for him:
1. Conventional meds.
2. Shrooms.
3. Kudzu.
4. Oxygen
(not necessarily in any order at all - my hubby hasn't tried the kudzu yet but his "magic bullet" appears to be a combination of oxygen and conventional meds (lithium) - THIS cycle. Next cycle might be different.
on Apr 24th, 2005, 12:04am, RACH wrote:| I DON'T THINK ANYONE UNDERSTANDS HOW HARD IT IS TO LIVE WITH SOMEONE YOU LOVE THAT IS GOING THROUGH THIS TOTAL HELL! |
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ok, this is where I'm going to stop quoting you. Yes, Rach, there ARE people who understand and we are right here to catch you when you fall, ok? BOTH of you. Does your husband know about this site? You have no idea how therapeutic it is for clusterheads to find each other. To know that they are NOT the only one to feel this pain is HUGE in their survival. To know that someone else understands and is an example that this is survivable, well it builds incentive like you would NOT believe. Same goes for finding other supporters. It's like we find someone from our home planet and few words are necessary to establish a common footing.
My advice to you? If you do still love him and want him back (yes, it is possible) - WORK for it. Educate yourself. Read everything you can. Sharpen your teeth when you're dealing with his doctors and push for viable treatment for him. Educate your chidren as to what he's going through. And show him that you're strong enough to help him find his strength again.
If you'd rather talk privately, you can email me at moxie_miss@hotmail.com anytime, Rach. I've worn your shoes and lived to tell about it. Hang in there, honey - we want to help you find your balance, ok?
Hugs,
Margi
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| « Last Edit: Apr 25th, 2005, 10:08am by Margi » |
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Margi
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Re: I CAN'T TAKE MUCH MORE
« Reply #20 on: Apr 25th, 2005, 10:09am » |
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you and I were posting at the same time. What do you mean you couldn't get on at Supporters Corner? If you could post here, you could post there. Where were you trying? If you were trying to post at the Family Services Team over at the OUCH website, it won't work there. I closed that area down last month.
ok, I've just read your latest post. The prednisone (steroids) could very well be adding to his "bite your head off" responses. Horrible stuff, that pred. Don't blame him, blame the meds and "the beast".
As to him not wanting to learn about cluster - very common. My husband was the same way at first. What I did was printed out some of the testimonials from the home page and that really caught his attention. I think Mike was at the point that he had convinced himself he was totally alone with this pain. Can you imagine how that must feel for someone? Consider the world's population and then try to imagine how YOU'D feel if you were the only one to feel pain like this? And then imagine how you'd feel if you found a small group of people who DO go through what you do? An oasis in the desert, for sure!
Yes, this is hard on kids - it's hard on everyone. We raised a daughter through it all, though and what I did when Mike was getting hit was to distract her and get her busy doing something else. As she got to be a teenager, she understood that cluster time was quiet time and she just took it in stride that there were times when Mike just wasn't available to her.
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| « Last Edit: Apr 25th, 2005, 10:18am by Margi » |
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Linda_Howell
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Re: I CAN'T TAKE MUCH MORE
« Reply #21 on: Apr 25th, 2005, 11:09am » |
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Hey RACH,
Margi has given you some excellent advice here.
I was about to bite YOUR head off for some of the comments you made in your first post til I scrolled down and saw what she had to say. Believe me this lady is the guru of supporters and she certainly *DOES* know what it's like to walk a mile in YOUR shoes.
I hope you will take her advice to heart and oh....Please stop shouting!!
Linda
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RACH
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Re: I CAN'T TAKE MUCH MORE
« Reply #22 on: Apr 25th, 2005, 9:58pm » |
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Thanks Margi & Linda... I really didn't mean to sound like such an ugly person when i posted the other night. It's not like that, i swear. I was exhausted and having a poor pitiful me moment! I have and continue to do all the research I can. I have many binders full of information and I go back to it each time a cycle starts. Between cycles we seem to push it way back and try to forget. You are right it is like hitting a brick wall. As for his symptoms, (I know you have to check), stabbing pain over & behind the left eye, eye lid droops, nasal congestion on left side, yes, it's CH. I have put myself in his shoes and I can't imagine the resentment, fear & pain that he lives with. It is heartbreaking! Maybe I feel pathetic because there is nothing that I can do to help except keep bringing him ice. He says that and meditation type breathing is the only thing that helps. I will check out the new treatments. Thanks 
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Margi
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Re: I CAN'T TAKE MUCH MORE
« Reply #23 on: Apr 25th, 2005, 11:17pm » |
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no need to explain, Rach - like I said, I've walked in your shoes.
Keep pluggin along, friend - you and I both know it does get easier and the pain free times really can be golden. Beg, borrow or steal some oxygen for him though - it truly has changed our lives and it really has been huge in helping Mike abort his attacks and stay calm through them. If meditation breathing is helping your hubby, that's a really good indicator that oxygen would be even better for him.
And I honestly did mean that it's ok to email me directly if you'd like to talk off the board. Sometimes it's a lot easier when it's one on one.
Hang in there, lady - just you posting here at all shows that you're on the right road to dealing with this.
BIG hugs,
Margi
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RACH
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Re: I CAN'T TAKE MUCH MORE
« Reply #24 on: Apr 26th, 2005, 10:16am » |
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Doing much better today!!! He went back to work after 7 days off. He hasn't missed that much work in 30 years!! I mentioned o2 to him again and he said no, it doesn't work. Even though he won't log on, we (all of us) discussed some of the things you talked about & he was really interested in what you all had to say. I told him what you said about the steroids and my daughter said that we shouldn't take anything he says personally. Easier said than done. He had 1 last night but he felt like it would have been much worse had it not been for the steroids & botox. His injection in feb. seemed to work, but then he was having the intense pain above the area, so they gave him another dose 2 weeks ago. Is there any chance that it might work?? Any success with it?? Have a great week and thank you for getting my head on straight!! Rach
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