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Title: Here's a thought.... Post by Margi on May 21st, 2003, 6:31pm I quite often get emails from fellow supporters that their sufferer has fallen back into cycle. That always makes me feel so sad - for everyone involved - and I automatically go into 'cluster mode' ...offering up suggestions to help find temporary relief, lending an ear, etc. Sometimes I feel so guilty that Mike and I are now blessed with longer remissions and we have a lot of non-cluster time on our hands. I don't know about you other supporters, but when I hear of someone else starting to dance, I want to lend them my supporter's weapons while they need them. Know what I mean? So, to all you supporters out there who are NOT supporting a cycle right now, let's keep an eye out for those who are. Shoot 'em an email and just let them know you're there or something. Supporters that I know of needing vibes right now: BonnieW Firebrix Jackie Sharon TrayM4 Leesa? was it a rogue attack or was it the real thing? AtWitsEnd's wife (she sounds like a GREAT supporter, BTW) That's all that I know of at the moment....please feel free to add names to this thread if you, or someone you know, need(s) us to pool our resources for you. Or if you know a supportless sufferer.... We've just got all this supporter stuff inside us and it's not being used at the moment...I guess this is kinda like the Empty Nest Syndrome. ::) |
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Title: Re: Here's a thought.... Post by Jackie on May 21st, 2003, 8:53pm Great idea, Margi. We're doing pretty good right now...as good as it gets in a chronic house. I've been trying to keep an eye out for any newbies or anyone having a really bad time that could use an extra boost...sending a few e-mails in their direction. I think it's REALLY important to get to those who don't have any good support at home. Just a simple "thinking of you" e-mail can make a big difference. Jacks 8) |
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Title: Re: Here's a thought.... Post by BonnieW on May 23rd, 2003, 6:02pm Thanks for that Margi - we are definitely in cycle again here - as much as Warren wants to think it is just a random attack. He just called from work and got hit there, but managed to get to First Aid and the oxygen there in time. Thank goodness there is an understanding First Aid attendant - who just lets him use it as he needs. As much as I am dreading the next couple of months, I can only imagine how he is feeling!! At least he had 20 months of remission - something to be thankful for. I do not know how those that are chronic deal with it - but I guess we just have to do whatever it takes. I am thinking of everyone else on the list and will check in lots. Take care everyone. |
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Title: Re: Here's a thought.... Post by cathy on May 24th, 2003, 4:23pm Great thread Margi.... Sorry to hear that Warren is back in cycle Bonnie, Im here often so if you want to chat or vent or whatever just let me know...you to Jackie. Luckily Wes is okay at the moment, and we're now armed with the O2 hope it works for him if he does need it because they won't let him have anything else just yet.... :-/ To all of you on margi's list wishing you PF times but let's remind Margi that she is also allowed to vent and rant and ask for support if and when she needs to, okay Margi....we're here for you too! Take care all Cathy :) |
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Title: Re: Here's a thought.... Post by merdjb on May 27th, 2003, 2:13pm Hello! I'm new to the list and think it's a godsend. My fiance is a cluster sufferer and is in his 3rd spisode in the last 6 years. This new cycle started 2 years almost to the day after the last one and the one before...always right before Memorial Day, making me wonder if there might be something seasonal that can trigger them. I have to say, I'm much more calmer about the situation then I was that very 1st time when I honestly thought, especailly after 2 different doctors couldn't diagnose the problem, that he might be dying from some horrible neurological condition. We finally found a doctor that knew right off what it was and started treating the condition. 2 years ago the cycle lasted almost 6 months before finally the combo of prednisone and depokot knocked them out. The one thing I can say to family members attempting to support their sufferer is that whatever self-pity you may be experiencing because you haven't seen the light of day for the entire summer or that you're awaken every night at 2am what you're feeling is nothing compared the pain of your loved one. Michael likes me to be with him...reminding him to breath, providing a hand to squeeze, or to rub his back in attempts to soothe the spasming muscles. I've read that some sufferers want to be alone and I've read of some supporters not being able to watch their loved one dealing with the pain, but I couldn't imagine leaving him to deal on his own with the pain and anxiety. I've also discovered that you have to reassure your loved on that you do, indeed, love them very much. As time wears on depression starts to set in for the sufferer...their entire schedule, work and play, is destroyed by these monsters that attack them several times a day. This is about them...not you and you need to vent your frustration to a friend, another family member, anyone, but the sufferer. It will do them no good to sense you're angry at them because a vacation has to be reschedled or you have to attend events alone. Chances are the anger you're feeling isn't at aimed at them, but at the horrible condition they're dealing with. Just let them know you love them, and eventually the episode will subside and for awhile things will be normal again. If anything I've grown to love Michael even more since the 1st episode. I was so worried I was losing him that I can now support him unconditionally knowing that as awful as it is to watch him in so much pain, that he'll still be with me when the episode is finished. I suppose everything is realtive and perspective can provide one a bit of hope. Thanks for listening! Debbie |
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Title: Re: Here's a thought.... Post by Margi on May 27th, 2003, 2:41pm Wow, Debbie - AWESOME first post! You sound like you're doing a fabulous job for Michael. He's a lucky guy. We supporters here can learn a lot from you! Keep up the great work! |
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Title: Re: Here's a thought.... Post by Jackie on May 27th, 2003, 5:56pm Debbie, I agree with Margi. You are doing a wonderful job supporting your Michael. My hubby, Blake, a chronic sufferer, likes for me to be right by his side during an attack too. I think they are a lot less scared with us there...dunno for sure...it's kinda like a "safety in numbers" thing. Another good thing you're doing is helping to keep his spirits up...the best you can. We're here if you need us. Take Care & Good Luck, Jacks 8) |
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Title: Re: Here's a thought.... Post by merdjb on May 28th, 2003, 8:43am Thanks so much for the affirmation...I sure needed it after the night and morning we had. It's so difficult to leave for work when he's feeling so badly. This morning he tried to get through the headache without an imitrex because they're running low and 12 more days before they can be refilled. Fortunately, this one came and wnet relatively quickly. I can't tell you how great it is to know I've got an outlet with people who understand! THANKS!!!!!!!!!!!!! |
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Title: Re: Here's a thought.... Post by Jackie on May 28th, 2003, 11:56am Hi Debbie, You mentioned running short on imitrex. Have you checked out the Imitrex tip (botton on left)...some have great success with it and it gets/makes 2 or 3 shots out of one. I was also curious....has your Michael used oxygen therapy? Good Luck, Jacks 8) |
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Title: Re: Here's a thought.... Post by merdjb on May 28th, 2003, 1:18pm Unfortunately his insurance won't cover the Imitrex injections....just the pills and nasal sprays. He uses the sprays for the really kick-a** ones and the pills for the ones where the pain is a bit more manageable. His neuro attempted last cycle to perscibe oxygen therapy but, again, the insurance wouldn't cover it. He called him today to see if they can try again. I did find a few places online where one can purchase Imitrex far more inexpensively then our pharmacy charges for non-insured coverage. We will be ordering some this evening to have in reserve. |
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Title: Re: Here's a thought.... Post by Jackie on May 28th, 2003, 3:05pm By all means try for the oxygen again. If the doctor will write the script you can get it yourself...then appeal the ruling by the insurance company. It's not nearly as expensive as the triptans. Your doctor can help you with this by writing letters to the insurance company. If you think he can handle the shots (not being used to them) ask the doctor to write a script for the injections...just a couple thoughts.... Good Luck, Jacks 8) |
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Title: Re: Here's a thought.... Post by merdjb on May 28th, 2003, 3:13pm thanks for the suggestions...we need all the ones we can get. He's awaiting his doc's call back as we speak. I told him the whole CH world seems to have oxygen therapy so to ask the doc for the script. we're even having turkey tonight...hey, you never know maybe there's something to the tryptphen (sp?) theory...and it's realtively free and won't leave him wasted. :) |
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Title: Re: Here's a thought.... Post by Jackie on May 28th, 2003, 3:22pm You might try printing out some of the med. and oxygen information on this site and the OUCH website , have him take it to his doctor...it might help your cause. Good Luck.. Jackie 8) |
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Title: Re: Here's a thought.... Post by cathy on May 28th, 2003, 5:35pm Hi Merdjb...Welcome to the board...you've already been given great advice....sorry to hear that yr fiance is a sufferer, but it looks like he has a great supporter...!!! There are some GREAT supporter on this site too, keep us posted. Cathy :) |
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