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        New Message Board Archives >> Jul-Sep 2003 >> The latest on Chuck
        
(Message started by: ClusterChuck on Aug 24^th, 2003, 6:30pm)

Title: The latest on Chuck
Post by ClusterChuck on Aug 24^th, 2003, 6:30pm

Hi, Bob again.
The good news is that Chuck continues to improve. The bad news is that he had a rough day today with his headaches. He was not in the best of spirits, when I was there. He wants to get out. He wants a cigarette. He wants them to remove all the wires and tubes that are keeping him confined to the bed. He even made the comment that got me mad. He asked why they saved him, why didn’t they just let him go? I really gave him the dickens for that statement. Too many people are praying and pulling for him not to survive. Too many people need him, love him, even if it is from a distance.
He had a beast attack, as he calls it, while I was there. It was not a pretty sight. Devastating! They rushed me out of the room so that I did not see the whole thing. They have to strap him down into the bed to keep him from thrashing and trying to get up to pace, run, dance, and everything else I have seen him do. Fortunately, it did not last that long, only about 45 minutes. But what horrors he had to go through for those 45 minutes! I can’t see how any of you can stand it. When I got back into the room, they had straps to each leg, each arm, and across his chest, all to keep him in the bed and the tubes and wires connected. He looked so desperate! He obviously had been crying, and unfortunately, I ended up doing the same. We had a good cry together, maybe it helped him. How much more torture does he have to go through? How can anyone take it? It is inconceivable that he and the rest of you are forced through such torture, and yet you all seem to survive it, and still have the sense of humor and compassion that you all seem to have. God seems to have cursed and blessed you at the same time.
By the time I left, he was better. He was just irritable and cranky. I guess he has the right to those moods! Even after I witnessed his hell on earth, I can see that he is getting better. They did restart the DHE treatment that they had to stop earlier. He is getting a lot of different drugs, and he says it is getting better. If what I witnessed is better, I can not imagine what it was before! He says that the attacks are shorter, not as severe, and not as many. I left there around 6pm, and he said he has only had 5 attacks so far today. How can he survive through one, never mind “only” 5 today? What is a bad one, if what I saw was “not as severe” as they usually are?
Yesterday I was so happy! I guess I sounded a bit giddy in my message to you. I was doing what you call a happy dance. I am sorry I can not be as chipper and cheery and bring you better news. But at least they have his heart under control, and they can direct more of their energies onto those devastating headaches. I feel funny calling those “headaches” as they are as far as I can imagine from a “headache” that most of us think of. The bottom line is, he is much better. I have to keep telling myself that.
You people are more help than any of you can be aware of. You have helped me, and I am not even a “clusterhead” sufferer. I keep trying to print your support out for Chuck, but I cannot figure out how to get his printer to work. I have told him about it, and I can see that it helps him immensely. He is frustrated he can not be online with you. You people are the salt of the earth. The honest and sincere compassion that I see is amazing. Whatever else is going on, that shines through. The love, support, and friendship is what this site is about, and you all do it so very well. I thank God for this site and that wonderful person, DJ for this site and all of you. Continue your wonderful work. It is so deeply appreciated.
I guess I have rambled on for long enough. I need to quit blubbering and get this information out to you.
Thank you. I can’t say that enough, thank you.
God bless
Bob

Title: Re: The latest on Chuck
Post by OneEyeBlind on Aug 24^th, 2003, 7:20pm

Tell Bob PAIN FREE VIBES are coming his way. Praying the DHE drip works for him !!!!!!!!!

Title: Re: The latest on Chuck
Post by tsayswhy on Aug 24^th, 2003, 7:49pm

made me feel like :'( reading this :vibes for chuck god bless

Title: Re: The latest on Chuck
Post by CathiP on Aug 24^th, 2003, 7:54pm

Bob- What a big heart you have....Chuck is lucky he has your friendship!
Please tell Chuck to keep pushing forward! I'm glad the DHE drip is back at work, and I'm sending out the best selection of heart/head vibes I can find!
Thank you for keeping us posted, Bob....keep thinking positive.
Cathi

Title: Re: The latest on Chuck
Post by andy on Aug 24^th, 2003, 7:55pm

Bob, thanks for the updates on Chucks condition. You are a true friend. Lots of good vibes are heading up there for Chuck and some for you too. ................andy

Title: Re: The latest on Chuck
Post by badfly on Aug 25^th, 2003, 6:40am

Bob thanx for the update. You are a wonderful person for standing by your freind like that. It is really rare, and I am jealous of Chuck. You tell Chuck that I said, no matter how bad things get, at least he has/is blessed in his freindship with you.
Give him our best and tell him we are all rooting for him.

Title: Re: The latest on Chuck
Post by Georgia on Aug 25^th, 2003, 7:36am

Bob - As my husband always says.."clusters are not a spectator sport". He and I both have CH and it tears me to shreds to watch him in pain...and to feel so completely helpless...I usually have to turn away or leave the room.

You are a brave soul for staying with him as long as you could. Go back to happy dancing now, clusters hurt like hell....but they ain't gonna kill ya. (hard to believe after seeing one, I know)

Tell Chuck that every ounce of strength we have is being sent to him....tell him that he is not alone in this battle against the beast...he has thousands of clusterheads from all over the world fighting beside him.

Oh and the phone number!!! Please?! If you don't have the number on you...just tell me the name of the hospital...I can get the number from there.

Stay strong, both of you. We need you.

Peace and love,
Georgia

Title: Re: The latest on Chuck
Post by taraann on Aug 25^th, 2003, 9:13am

I would also love a phone # if thats possible.....I'm going offline soon for probably about a week and i would love to call and see how he's doing

my email addy is tara_ann_77@yahoo.com

Title: Re: The latest on Chuck
Post by Peppermint on Aug 25^th, 2003, 9:45am

Bob,
You've not rambled, you've written some insightful and touching words. It IS wonderful work, the support on this site from everyone and what you are doing.

I'm sorry Chuck is getting hit and what you witnessed. That you are learning for your friend's sake is a wonderful thing.

Please give Chuck best PF vibes and thoughts, and hang in there. I know its easier said than done. To repeat - Stay positive!

Take care,
Pep

Title: Re: The latest on Chuck
Post by Patrick_A on Aug 25^th, 2003, 11:08am

I am so happy to know that Chuck is only dealing with the CH problem now. As we all know, CH dont kill! It just sux!

Pain free vibes out to Chuck

Patrick

Title: Re: The latest on Chuck
Post by stuey on Aug 25^th, 2003, 11:20am

Bob good feeling and thoughts going Chuck's way. If I had a friend like you - wow. Stuey

Title: Re: The latest on Chuck
Post by ShariRae on Aug 25^th, 2003, 7:39pm

Bob,
Thanx for the updates on Chuck.. Please tell him he is in our thoughts. He is truly a lucky man to have a friend like you, I do hope that after he comes home & comes back to the board that you stick around here as well. You have witnessed in Chuck what few people ever see...the demon at work. Now you are officially a supporter..so ya hafta stay!
Huggs
Shari

Title: Re: The latest on Chuck
Post by Charlie on Aug 25^th, 2003, 7:50pm

Thanks Bob. You're one hell of a friend. Chuck is very lucky in that department.

Damn clusters. They are horrible but they won't kill you. I saw someone have one for the first time last month and like Den says, it's not a spectator event.

Chuck has my best wishes and thanks for your posting.

Charlie

Title: Re: The latest on Chuck
Post by hopefull on Aug 26^th, 2003, 9:56am

Hang in the Chuck for all thoughs who love you ...and no pinching the nurses....*smile*

All kidding aside...be good and take care