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Title: Board's true purpose Post by Guiseppi on May 4th, 2007, 10:40am Read Erikas post in the supporters corner, under WOW May 3, 6:14 am. It'll make it clear to all why DJ's first in line at the pearly gates. WOW. Guiseppi |
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Title: Re: Board's true purpose Post by thomas on May 4th, 2007, 11:27am You are so right. Man did that post bring back some memories (not good ones) for me. The whole not knowing what was going on, thinking I was going to die. Then the awesome relief of getting a diagnosis, then the feeling of defeat when not much was working the relief again upon finding this place. Yep DJ is my hero and always will be in my top 5 favorite people in my life. |
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Title: Re: Board's true purpose Post by Margi on May 4th, 2007, 11:34am Amen, Thomas. I think a big part of the reason folks stick around here (whether in or out of cycle) do so because we all WERE so greatful (grateful? I never can spell that word!) to have found this oasis. I think, by giving some back to the community and helping folks who are new, it makes us feel as if we're making a dent in the payment we owe DJ. There are SO many more new folks arriving here now which is good and bad, I guess. Sad to see that this many people are having head pain at all, but good to see there are such valuable resources out there now. I know misdiagnosis is a common thing nowadays but true cluster folk can recognize each other through the haze...usually right from the first post. It's so cool to watch those folks get love-bombed and to see the light bulbs start going off for the newbies. Always a good feeling to come in and read the morning reports too when a sufferer has had their first good night in a long time. DJ's created QUITE the amazing thing here..... :) |
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Title: Re: Board's true purpose Post by Rosybabe on May 4th, 2007, 11:50am on 05/04/07 at 10:40:15, Guiseppi wrote:
sure He will be, he already won his place in heaven ;;D |
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Title: Re: Board's true purpose Post by Yorky on May 4th, 2007, 12:11pm on 05/04/07 at 10:40:15, Guiseppi wrote:
erica WOW! « on: May 1st, 2007, 11:44pm » Quote Modify -------------------------------------------------------------------------------- Let me start by saying that I am not sure if I am releived or not. Part of me is happy to hear it really isn't an anurism and my honey isn't dying like we both were thinking, the other part feels so frustrated that there is no cut and dry solution and he will most likely continue to suffer for the rest of his life. Here is our story: About 10 years ago my honey started having these horrible one-sided headaches that would cause him to go from super tough guy to kicking, screaming, banging, cursing, pacing - if you can even call it walking - in less than 10 minutes. Always the same side, same time of year, same time of day, etc. I have witnessed in horror and terror the agony of this beast and his struggle to defeat it. For the first two years he went to every specialist he could and had every test run possible. After taking every prescription possible and ruling out every other medical cause of these horrible life-altering pains, his doctors finally reached a verdict. They told him he had a degenerate nerve and that the only possible help would be surgery with little hope of success. They led him to beleive he had baffled the medical field as no-one had seen anything like it and had no clue what to do for him. They said it would most likely get worse and probably eventually kill him. Frustrated and scared - he quit going to the doctor. No amount of pain medication ever worked, noone could do anything to help him. It seemed to come and go - at times he went 5 months or so without incident. But they would always return. I felt and feel so helpless, and frankly it is TERRIFYING to witness!!! As it must be so much worse to experience! We never kept a headache diary so I am not sure of the pattern yet, but we are starting to do that now. We thought it was over. He went a full 9 months without anything and we had both begun to thank God daily for taking it away. Until 6 weeks ago that is. Having gone so long without one, he had forgotten the intensity of the pain and I witnessed his terror and agony. The pressure just builds and builds until he is screaming and hitting himself and pushing so hard on his eye I am convinced one day it will pop out of the socket. I just sit there looking for blood to come spurting out of one of the sockets, but it never does. This last bout - which he is still in - is sending him over the edge. He is becoming paranoid and terrified to do anything for fear it will bring on a headache. You see, his start in the evenings always about 1-2 hours BEFORE he goes to sleep and then continue throughout the night even after he has gone to sleep. But the first one or two for the night happen before he goes to sleep not after. So he started thinking maybe air conditioning was causing it - or showering - perhaps it was a blood sugar problem and he shouldn't eat - the list goes on and on. I once watched him sew up his own finger with a needle so I know he isn't a wimp. To go from that to scared to bathe, eat, sleep, go outside, stay inside, etc etc etc is so terrifying!!! Especailly when the pain is so bad he contimplated ending it himself. The other night was def a 10 - just a horrible thing to watch your loved one go through. After his head didn't explode - I had to do something - so I went to webmd to self diagnose. And lo and behold there it was! His story - his pain - his symptoms - the BEAST! Here is where we are now - 10 years ago he had good insurance and now that we have moved to a different state and he started a handyman business - of course we find what we believe it may be and NO INSURANCE to do anyting about it. Does anyone know of any programs out there that may help CH sufferers with medical needs?? If anyone can point us in the right direction we would forever be indebted!!! thanks for letting me vent! I feel like we are home now! |
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Title: Re: Board's true purpose Post by Jackie on May 4th, 2007, 12:29pm Yep.....DJ is the bomb!!! Guiseppi...you nailed it!!! I remember coming here years ago.....we got our lives back. Jonny....you remember when....that was one hell of a night.....you, Paco, Gunner, Kip and me..... I swear you all helped me save Blake's life. Love to you all...... Jacks 8) |
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Title: Re: Board's true purpose Post by BB on May 4th, 2007, 8:45pm This is our home and I try my best to help keep it clean and nice and presentable :) , sometimes that means I have to take a broom to people who litter but mostly I thank those who bring fresh flowers :-* . Thanks DJ for giving us a home away from home :-*. Annette |
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Title: Re: Board's true purpose Post by Kingjames1 on May 4th, 2007, 8:54pm Wow Annette, thanks for looking out for everyone! |
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Title: Re: Board's true purpose Post by TxBasslady on May 5th, 2007, 1:24am on 05/04/07 at 12:29:59, Jackie wrote:
......So many Angels... God, I hope you know how much you're loved! Jacks, my dear friend....you have certainly earned your wings by paying it forward for all this time. I couldn't have made it without you! It's because of Angels like you that I had the strength to go med-free, and succeed! We've shared so many tears....and so much laughter and love together. These are special gifts to me...and I'm forever grateful. This board...gives a whole new meaning to "he ain't heavy...he's my brother." I love you all, so very much :-* Jean |
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Title: Re: Board's true purpose Post by chucknot on May 5th, 2007, 9:43am :) Short version: I had long forgotten my many years earlier off the cuff GP's diagnosis of Clusters (after All I was young and the pain went away). It came back and after years of Pain a diagnosis "you have a blood clot an aneurysm"...now you are going home every night alone with your 2 year old thinking you will fall over dead (not so big of a deal) and your 2 year old will be crying and shaking you saying daddy, daddy...only to finally lay beside you and wait for someone else's arrival. HUGE DEAL AND STRESS. Sometime later, discovery of Medical Incompetence and malpractice and back to just lost ignorant suffering. THEN MY SPOUSES DISCOVERY OF THIS SITE! [size=2]VERITABLE MIRICAL[/size] The impact of this site is immeasurable in those sorts of terms alone...not to mention the medical info, and personal support. So yes, WOW. |
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Title: Re: Board's true purpose Post by gore2424 on May 5th, 2007, 11:04am to all I have meet and all I have talked to this site is the greatest Ü Terry ( the builder) BTW "hey Dj and wifey keeping the OUCH semi washed and waxed Ü http://i16.photobucket.com/albums/b16/gore2424/16662d9d.jpg |
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Title: Re: Board's true purpose Post by Mrs Deej on May 5th, 2007, 12:24pm :'( :'( :'( :'( Soooooo, the hormones don't help this post at all!! LMAO!! I have been sitting here reading and just bawllin my eyes out. You all are amazing and you all are what make this It's amazing what just one person can do to touch another human beings life and soul...pay it forward. You all are the greatest family, I'm honored and humbled to be a part of it!! Love, Steph |
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Title: Re: Board's true purpose Post by Erika on May 5th, 2007, 1:58pm on 05/05/07 at 12:24:26, Mrs Deej wrote:
not just one person - but a host of total strangers! it IS humbling! We are AMASED by the outpouring of genuine care and love that we have found here. You really have no clue how very near the edge he was. I am forever indebted to all of you for helping me bring him back! Erika a newbie, but here for a lifetime! |
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