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Topic: The waiting game (Read 389 times) |
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Wifeofchman
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The waiting game
« on: Jan 26th, 2004, 6:31am » |
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I've had episodice CH for 10 years now. I'm sleeping on the couch as to at least let my family get rest. I survive on as little as 3 hours of sleep a night for months at a time. I lose 20-30 pounds everytime the beast wakes up and presents itself. I set here right now just wondering after a 3 severe attack night how much longer? I try to adhere to the imitrex inj. protocol as I would like to keep my liver for awhile. So I pick and choose which attacks are going to be the worst. Sometimes it pays off other nights I just rock and scream silently in the cold ight air with tears running down my cheeks wondering what kind of deals I can make to get these things to go away. I'm just throughly exhausted from each nights activities and in roughly 45 minutes my 14 month old will be awake and I have to care for him and hope that the beast at least stays away while I look after him 'til noon so I can go to work. The waiting game, not hurtful; just plain damn frustrating. When will they end this time ? "The Man"
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TTYL,
Carrie
Wife of CH Sufferer
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magman
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Re: The waiting game
« Reply #1 on: Jan 26th, 2004, 6:41am » |
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Gawd how I wish i could just come and sap the beast away from you!
Your description brings back such vivid memories of my own life only 1 week past that it brings tears to my own eyes. I feel for your bro and am sending you mega vibes that you may find that releif so you can at least tend to the little one.
My better-half has been gone too, and my biz has suffered cus i just can't. But it is only biz and not another life. Hang on Man, for this shall pass.
Devil leave my Bro alone!!!
-dan
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Renee
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Re: The waiting game
« Reply #2 on: Jan 26th, 2004, 7:59am » |
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THE MAN,
My heart goes out to you, more than you will know.
When you get into times like these, just remember to reach out your hand and we are beside you!
Are you trying the o2?
PF vibes and prayers for some rest for you,
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Woobie
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Re: The waiting game
« Reply #3 on: Jan 26th, 2004, 8:52am » |
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I'm sorry CHman...... I dont know what else to say - i'm not so good at words.
I hope you get some relief soon!
tina
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benj
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15 year cluster vet...and counting...
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Re: The waiting game
« Reply #4 on: Jan 26th, 2004, 8:57am » |
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keep strength 'Man', remember that you ARE stronger than these things - you gotta be, you've got a family who needs you. AND YOU WILL BE  You have to fight these things and never, NEVER let them win!!!
they will not be here forever - painfree days are yours soon.
reaching out to you brother... ...you have US all here to help, so suck up the good vibes  ...
PS - sleepin' through the night request coming your way....
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I don't think of all the misery, but of all the beauty that still remains - Anne Frank
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Wifeofchman
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Re: The waiting game
« Reply #5 on: Jan 26th, 2004, 9:09am » |
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I wished the o2 worked for me. It just doesn't do it. the injection take more than half of them away and I'm grateful for the means and ability afforded to me to be able to even do that. I fear for my marriage more than ever as this round has been the worst by far and it's toll on me and my wife. Maybe it's the wonderful joy that was brought to us by the lord 14 months ago that makes it more trying than ever but whatever the reason; it's a game that I just don't want to play.  I'm anxious to meet folks in raleigh next weekend as we look for some advice to keep this from tearing us apart. we both know that if it's any worse that I'll have to move out at least until they go away just give my wife some sanity. That I can control. "The Man"
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Carrie
Wife of CH Sufferer
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Patrick_A
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Re: The waiting game
« Reply #6 on: Jan 26th, 2004, 9:53am » |
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on Jan 26th, 2004, 9:09am, Wifeofchman wrote:| we both know that if it's any worse that I'll have to move out at least until they go away just give my wife some sanity. That I can control. "The Man" |
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I am sorry you are struggling bro, But moving out is not the answer. You need to attack the Beast with all you have. LET your wife support you during your struggles. Get to a Neuro and demand treatment. Prednisone taper with Verapamil knocked my CH's out. There are lots of different treatments that work for people. DO NOT GIVE UP!!!!
Patrick 
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ShariRae
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Re: The waiting game
« Reply #7 on: Jan 26th, 2004, 10:06am » |
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Have your wife go to the supporters page..she will find much help & understanding as well as helpful do's & don'ts for a supporter...DONT move out...that will be more damaging that any headache could ever be...Sending pain free vibes & prayers your way..
Huggs
Shari
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Jesus Christ and the American Soldier.
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Wifeofchman
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Re: The waiting game
« Reply #8 on: Jan 26th, 2004, 10:12am » |
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Already had my prednisone twice this cycle. Verapamil just doesn't seem to to work well for me and the hard thing is I affect so many peoples life's everyday because I'm in healthcare. I don't want to get anybody hurt from a mistake just because I can't think or function. It's not that I want to move out but sometimes it seems that no support would be better than some of the support I get at home. It's not her fault, she just doesn't understand. Lithium, I couldn't keep a consistant level no matter how much I took.
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Carrie
Wife of CH Sufferer
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magman
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Re: The waiting game
« Reply #9 on: Jan 26th, 2004, 10:45am » |
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CH Man,
Ever since I read you post about move'n out I haven't been able to get it off of my mind. Everyone else is right....it isn't the answer. Trust me! This is my first episode where i realized this is clusters and I have had to bear it alone and without the meds for clusters [been treated for meegraines for 18 yrs].
I know suicide isn't the answer, but week ago Sunday, I did have the 357 to the temple. Only thing that stopped me was looking at my wifes picture and knowing how she would suffer.....gawd my hands are shaking just thinking about it.
You cannot face this Beast alone!!!!!
Being that you are in health care, and probably have better access than most of us to professionals, why not demand and fight? Take some short term disability, get yourself admitted to the hospital? That would give your wife a break, she could still visit and support and you could get some treatment.
I cannot for the life of me figure out how you can maintain at work with what you are going thru???? Damn, I only do IT work and I have'nt been to one of my client's offices since xmas due to my episode this year.
Move'n out and being alone isn't the answer Bro, fighting the Beast is.
Hope I'm not medeling here, only try'n to help. Look forward to see'n you in Raleigh.
-dan
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RichardN
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Re: The waiting game
« Reply #10 on: Jan 26th, 2004, 10:48am » |
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A little hope for ya chman,
I've been PF (clusters anyway) for over a year now. Verap and 02 worked for me, also quitting drinking (definite trigger for me....dammit), water,water,water.
You said that the 02 didn't work for you. I seem to remember that when I came here neither Verapamil nor 02 helped Jonny (at that time, I don't think anything did).................the point being.........per recent posts, even Jonny who's had these MFs for a LONG damn time.... has finally found a cocktail + 02 that works some/most (I hope) of the time. SOMETHING WILL WORK FOR YOU!....and you're in the right place to find it.
I will be having surgery this Friday..........my wife will not be with me this time......my oldest daughter (mother of grandson Alex) and possibly younger daughter will be in attendance for this one. You see, my wife has seen me also in pain 30+ years with one rare disability, then the damn clusters, and this past year meningitis/encephalitis, treating bladder cancer these past six months. She just can't stand to see me hurt (by others especially) when there's nothing she can do about it. It's like having a sick child..........you suffer with it in your own way. So..........take heart that you're in a place that understands.
If you know someone at Mercer, go borrow a canoe and paddle upriver to the sandbars arround the area of the indian mounds...........or go climb the large mound, especially if you can make it just prior to a good storm. We lived in Macon 25 years ago (Bond Street) and still miss being able to gather pounds and pounds of pecans for nada every year.
Hang in, hang out, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Wifeofchman
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Re: The waiting game
« Reply #11 on: Jan 26th, 2004, 11:43am » |
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Thanks for the replies, the leaving is for her not me. I feel like she thinks I can turn this on and off. I wish I could, we all do! She really is sweet and it's probably just more stressful to her this time around then any. I'm not going to candy coat the fact I'm in miserable shape most days lately with the only reprieve being no pain in the daylight, most times. I feel like the walking dead and I'm not sure which direction to go in. Not working is just not an option. Last week I went through 16 injections during the working hours just to stay at work. Maybe some are rebound; some are not, I just can't afford to have them at work in any shape or form. My job is serious and needs my attention at all times to be sharp. I guess maybe I should take the same approach at home. I can't wait for the weekend. You hearing this Deb, my friends think I'm crazy for doing this but then they have also seen the beast come about and say go for what do you have to lose.
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Carrie
Wife of CH Sufferer
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BlueMeanie
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CH Man,
Sorry to hear the Beast is back. Remember, being an episodic. this cycle WILL end. Don't give up and hang in there fighting the Beast with all you've got. Your probably at high cycle right now. It WILL get easier with time.
Glad to hear you're gonna meet some Clusterheads in North Carolina. It will be worthwhile for you to understand how this pain effects us all at different levels. Taking a few days off work might help you get through this also.
PFDAN
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Callico
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Re: The waiting game
« Reply #13 on: Jan 27th, 2004, 2:33am » |
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CHMan,
Let me add my little bit to the mix. Unless you want your marriage to end, DON'T leave. If you took the same vows I took, you each promised to be there for each other "for better or for worse, in sickness and in health." I understand you wanting to spare her the stress of you in this condition, and I understand that she does not understand why they turn on and off, but I would strongly urge you both to spend some quality time with another clusterhead's wife in Raleigh. Pick her brain on how your wife can cope both with you and your suffering, and the need to handle things around the house that you cannot handle right now. Trust me, it's worth it for both of you. Right now while you are in the middle of the storm is not the time to think about getting out of the boat.
As someone else said, have her get on the supporter's board and pick other supporter's brains. This site is good for those of us who suffer to be able to interact with others who understand us, but it is also good for our supporters who cannot understand to be able to ineract with others who are in the same place.
If we can help personally IM me for my phone number. My wife would be most happy to talk with your wife and try to help her understand and be able to handle things. She has been with me through 25 years of this, and I could not handle it at all without her, specially since going chronic.
Didn't mean to write a book!  Let us help you. That is why this board is here.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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Little Deb
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Re: The waiting game
« Reply #14 on: Jan 27th, 2004, 3:17pm » |
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WOW! I am so glad you guys are coming to Raleigh! Come as soon as you can! Chuck and Paige will be here Thurs. and Dan, Mikey, Kim and Nancy and others will be here Fri. Kim will be great for your wife to talk to. And she will learn alot visiting with everyone. I am looking forward to meeting everyone, and for everyone to meet each other.
Stay strong, and come as soon as you want
little deb
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AlienSpaceBabe
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chman: it's really tough to know how much you affect someone else, isn't it?
my question is - have you asked her what she wants?
the supporters board is a fantastic place for supporters to get information and to vent frustrations.... if she wants you to stay, have her look at the supporter board. if she wants you to leave, have her look at the supporter board. chances are that she wants you to be with her and not leave. no matter what choice you make, you'll be giving her the gift of information and experience through the warriors who are our supporters!
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