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Topic: Need some help please (Read 433 times) |
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ThisHurts
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Need some help please
« on: Nov 17th, 2003, 11:21pm » |
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Been awhile since I have posted any thing, but I have come to the end of my rope and some advice would be nice. For those of you who remember me, I have Chronic Ch's. Since Dec of last year my life has gone away. I have lost my job, never sleep, completely isolated my self from friends and family. My doc's told me to apply for SSI, but so far I have been denied twice and am going for my 3rd appeal. (any on else out there whose has gone on disability please let me know how you made it) I am just about to lose everything my wife and I have. I just don't know what to do any more. Now I know my story is just like most every one out there so my brand of suffering is no greater than anyone else's. I guess I would just like to hear how you get up each day without putting the barrel up to your head.
Any input would be appreciated, even if it is get off your pity pot Dan! I just really need to hear from those who understand.
Thanks,
ThisHurts
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eyes_afire
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Re: Need some help please
« Reply #1 on: Nov 17th, 2003, 11:34pm » |
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Dude, sorry you're having a bad time. The thing that keeps the barrel from my head is verapamil. If you've tried everything else, maybe give Clomid a try. Check out the meds board... a few have been helped by it. Sorry I can't be a greater help. Just know that we care.
--- Steve
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TxBasslady
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Re: Need some help please
« Reply #2 on: Nov 17th, 2003, 11:44pm » |
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Hi Dan,
Sorry to hear that you are having such a bad time.
Sorry, but I can't help you with the question re the disability.
It is such a shame that CH can take this kind of toll on people's lives. I have heard your story before, from other sufferers.
I know that I am not much help to you, but I can sympathize with you....and let you know that my thoughts and prayers go out to you and your wife. I sincerely hope that you can find the solution you need to keep on going.
Sending lotz of pf vibes to you......
Jean
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Karla
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Re: Need some help please
« Reply #3 on: Nov 17th, 2003, 11:46pm » |
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I am on chronic and on disability. Please check your pm.
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Karla
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12gagueblast
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Re: Need some help please
« Reply #4 on: Nov 17th, 2003, 11:46pm » |
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Keep tring for the SSI many times it takes 2 or 3 times. They do that all the time my father is on SSI not for CH but for MS and they did that to him.
Good Luck
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Charlie
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Re: Need some help please
« Reply #5 on: Nov 17th, 2003, 11:47pm » |
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Sorry for you. Here's hoping you get a break.
I hope you have a lawyer...even if it's one of those mouthpieces with his picture on a billboard. The more you let them do the talking, the better.
Let us know how you make out and stick around.
Charlie
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Peppermint
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Re: Need some help please
« Reply #6 on: Nov 17th, 2003, 11:50pm » |
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Hey Dan..
Missed you... and your 'tude.: .. ... DAMN. You know, there's plenty of help here for you.... Do you still have your health insurance??
Check your IM's Dan. Don't let go that rope Spidey.....
Pepper
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Mastifflvr28
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Re: Need some help please
« Reply #7 on: Nov 18th, 2003, 12:26am » |
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ThisHurts,
BIGASS vibes goin up to you buddy.
Maybe come back and chat with us when you are getting a break. Ya know we CAN cheer ya up, if just for a little while. Or you can cheer us up
We ARE thinking of ya,
Take care,
Mast
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Mastifflvr28 (aka Michelle A.)
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ClusterChuck
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Re: Need some help please
« Reply #8 on: Nov 18th, 2003, 12:34am » |
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Shoot! SO sorry to hear you are so far in the dumps!! DAmn!
I am chronic also, and not SSI, but may have to do that soon. From what I hear, you have to keep at them to get it. Pain in the ass, but eventually you will get it. Hang in there!
Chuck
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sandie99
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Re: Need some help please
« Reply #9 on: Nov 18th, 2003, 5:18am » |
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ThisHurts,
I am so sorry to hear that you're having awful time right now... Here's my story, hope it helps and if not, use it as sleeping pill 
Ch is rather new thing for me, I was dignosed in this January, after having constant headaches since mid-October 2002. Last fall was difficoult time for me, as I had no idea what I had (although I've had HAs all my life, but as we know, nothing is like CH pain) and honestly, I thought I was going crazy and losing my mind! I lost lot of weight, lost the tiny amount of self esteem I had and felt, well, suicital. The diagnosis helped, but I was very wrong to think that I would be cured after that, oh no! I tried several meds and although the painkiller could ease individual attacks, cycle went on and on. This summer I had twice periods of 21 days without ch, after that ch has been back every now and then. And then, in october, the proper cycle started and I begin another preventing med which didn't work. And what was nice, the pain med stopped helping, too. Now, after visiting new doc, I have new pain med (maxalt) which works and I'm due to being new preventing med within a week.
What is different, that I see light in the end of the tunnel. I'm taking life positively now, as I have overcome other problems I had in my life. I know it sounds weird, but I don't let CH get to me anymore. I think it's just a tiny little mosquito, who comes to bother me occasionally during the day (had 3 yesterday), but I kill them one by one. For me, the books by Joseph Murphy (The Power Of Your Subcouncious Mind) and Louise L. Hay (You Can Heal Your Life) have helped a lot. I don't know, if they could help you, too, but it's worth taking a browse in your local bookstore.
I wish you the best with your battle!
Hopefully I didn't bore you...
Best wishes & PFdays,
sandie99
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JohnM
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Re: Need some help please
« Reply #10 on: Nov 18th, 2003, 7:37am » |
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Thishurts, I can imagine how you feel. I am "only" episodic but in April 2002 I was feeling at the end of my rope too with the constant pain and at risk of losing my job and life to this bastard. I felt like life sucked and the CH was sucking the life out of me. I am 52 and have had this affliction for most of my life.
I have told this story before on this board and been flamed for it many times so I am very resilient to it now, (so the flamers can just please fuck off  ) so here goes:
When I was at my lowest ebb a friend advised me to try a detox diet, using a detox aid he had had success with restoring his health, that claimed to do all sorts of good things for you. Check this out. http://www.pharmaline.co.za/Bepure.htm
It only seems to be available in SA but no doubt something similar is available wherever you are in a health store or pharmacy.
I went on a diet of Fruit, veg and water for a month and cut out all wheat/cereal products and all junk food (and most everything else from my diet for this period.
My CH cycle broke after 4 or 5 days of hell from a constant headache, the shits, aches and pains on the detox. Then I started to feel much better. I have repeated this on a smaller scale (1 weeks at a time) every 3 months or so since then and have been mostly HA and totally CH free ever since.
I really don't know if the Bepure was the main ingredient in my success, but it worked for me.
You asked for advice and this is mine to you - try it out. It is much cheaper and safer than all the meds! It has helped several people I know get their life back, but I will admit that others have tried it with little success. It may not work for everyone.
Hope you get your life back together soon.
Feel free to email or message me for more info.
Good luck
Cheers
John
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catlind
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Re: Need some help please
« Reply #11 on: Nov 18th, 2003, 8:12am » |
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Dan,
I'm so glad you have resurfaced. Promise you will stick around and let us help you out. Email me at catlind@cox.net and tell me what meds you need. I think you left some of your meds with me at the convention
You are close to a whole host of sufferers in the midwest, let us help you out. I would love to see you and your family in Jan. at the meet and greet, don't sweat the expense, I'll pay for it myself if it will get you out and around others who know what you are going through and can help you and your wife.
Email me. We know you're not an axe murderer
Cat
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TomM
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Re: Need some help please
« Reply #12 on: Nov 18th, 2003, 8:18am » |
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on Nov 18th, 2003, 8:12am, catlind wrote:We know you're not an axe murderer
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thomas
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Re: Need some help please
« Reply #13 on: Nov 18th, 2003, 8:51am » |
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I'm just a episodic, but man do I feel for you right now. Hang in there man!!!!!!!!! If you're not sleeping, you may want to try melatonin, it might help. Sending vibes your way pfnad soon.
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Paigelle
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Re: Need some help please
« Reply #14 on: Nov 18th, 2003, 9:30am » |
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It is so ridiculous they will give people SSI who don't really need, but someone who is suffering and needs help they deny. Sometimes I get so angry at "the system" for what they neglect to see. Keep trying, get an attorney. I wish you well!
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Ree
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Re: Need some help please
« Reply #15 on: Nov 18th, 2003, 10:27am » |
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!!!!Dan I know Dave spoke to you at great length at the convention hang in there and know we are rooting for you... we also have some left over meds we think you could use here... please call I am sending you my phone # in a pm... don't give up!!! Prayin for you... love ree
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Margi
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Re: Need some help please
« Reply #16 on: Nov 18th, 2003, 1:24pm » |
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on Nov 18th, 2003, 8:12am, catlind wrote:Dan,
I think you left some of your meds with me at the convention
......... I would love to see you and your family in Jan. at the meet and greet, don't sweat the expense, I'll pay for it myself if it will get you out and around others who know what you are going through and can help you and your wife.
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Lady, you ROCK. Same to you, Ree. Clusteroplis is full of heros.
See, Dan? We have an endless supply of rope here. Grab hold!!
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Little Deb
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Re: Need some help please
« Reply #17 on: Nov 18th, 2003, 1:53pm » |
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THis HUrts,
Hey. I don't know you. Wish I could help somehow though. Please see PM. Keep your chin up.
Hope to meet you in Nashville.
Little Deb
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catlind
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Re: Need some help please
« Reply #18 on: Nov 19th, 2003, 8:58am » |
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Ok Dan, since you haven't emailed you've left me no option. I have your phone number and address from the convention
Help is on it's way.
Ree, I'll email you with some info. I'm thinkin Dan needs to hear the voices of some clusterbuds.
Cat
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ThisHurts
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Re: Need some help please
« Reply #19 on: Nov 19th, 2003, 10:08am » |
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Well thank you all for everything. I really do appriciate all of the kind words and heartfelt statements. Knowing your all out there helps. I will try some of the suggestions, and let everyone know whats up. Again thank you all for everything
Except for you Cat! Ax Murderer! Who do I have to kill to get rid of that stigma?
Dan
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