CHfather Posted February 11, 2011 Share Posted February 11, 2011 Just getting this off my chest . . . I've only been here a little while, just a few months, but I've been shocked by how many folks show up, receive an outpouring of not just generous assistance but something pretty darn close to real love, and then disappear without so much as a thank-you or a good-bye or a "Hallelujah, I'm PF; don't need you folks anymore!" I can easily count five such cases without even trying, and that doesn't include the one who at least answered my PM asking what was up. It makes me admire you all all the more, because it feels kind of like a slap in the face to me; and it makes me more appreciative of the keiths and beckyvs and so many, many others who stick around, report on how they're doing, say thanks, and even help others. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted February 11, 2011 Share Posted February 11, 2011 I know what you are saying CHFather. I often find myself asking...what happened to...so and so. Oh well, I just have to hope that they are better. It seems that some people,once they get "fixed up" , don't want to even think about cluster headaches much less chat about them all the time. I understand their way of thinking, I just see things differently. Dan Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted February 11, 2011 Share Posted February 11, 2011 I disappeared from the main CH board for a year and a half due in part to a lot of crap happening. Computers getting screwed up, losing the internet, grieving, and just generally having life fuck me up. I was also in a place where the pain was so severe, I wasn't much use to anyone but those closest to me. When the disease is fixed, or under control, I think people forget about it. I've mostly forgotten about my Pseudotumor Cerebri/Idiopathic Intracranial Hypertension since I've had my shunt put in. I just don't think about it unless my pressure is up (and then, I'm a complete idiot who can't think properly) or the shunt is fucking up (Hasn't for 1 year now. I'm lucky.) It's not that I don't care about others with the disease... it's that other things have come up, and my brain is pretty much occupied in dealing with it. It doesn't mean I don't care, or don't think about the others with it. Life just has gotten so hectic, the PTC is better, and I just don't think about it. There was even speculation on the IIH board that the reason we don't hear that many "Happy Ending" stories with shunts, is because people are there while it's not working... and forget to tell everyone "OH MY GOD. IT WORKED." because once it works, you're good to go, no need to think about the disease again. Not until replacement, infection, or revision. (When it's any of those, you go back, because your life is on the line again.) It's different when you have to take something regularly for it, I think. If you have to be aware, and stand guard against it. I'm so thankful to everyone who IS here... those who are able to be here, and offer advice. Mystina Quote Link to comment Share on other sites More sharing options...
FunGuy Posted February 11, 2011 Share Posted February 11, 2011 I'm thankful for those that are here and I have only best wishes for those that have moved on. Lots of reasons for people coming and going. I hear what you're saying, I`m sure we all feel the same sometimes and I appreciate you voicing it. Keep in mind, we all keep doing what we do for the next person. And the next. And the next..... No looking back. Onward. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted February 11, 2011 Share Posted February 11, 2011 Hi CHfather, I understand your anger toward those who've come in pain, found relief and disappeared. More than anything, I think I'm sad for them. This is one place where almost anyone who wants to can ease the pain of others. And I think that, more than anything, is our purpose here - if there is any purpose at all. The number of people who've read your posts and learned from them or been comforted by them - or who will in the future - is, I'm sure, huge. Just in the short time you've been here. You know that you're both needed and appreciated. They would be too - if they'd stayed. Maybe you're just a little smarter about how the world works than they are. Thanks for staying, my friend. Ron Quote Link to comment Share on other sites More sharing options...
dereksgirl Posted February 11, 2011 Share Posted February 11, 2011 Maybe not all are "family", maybe some are just vistors, some poor wayfaring stranges seeking comfort and help. I think that is okay. I posted somewhere before that it "already feels like home" - some of us newbies - we read so much about your lives...we receive your help and hold you dear in our thoughts, we read of your suffering and hold you even dearer! But we feel inadequate to speak sometimes, unsure of what to say, afraid of our inexperience. I hope to be a sticker to it, a champion of this noble cause, until the day comes when we can all quit rowing because a cure has been found! Amen Funguy, "Onward!" Quote Link to comment Share on other sites More sharing options...
Guest Posted February 11, 2011 Share Posted February 11, 2011 They'll be back next episode... And they will get more help. Crazy world. the bb Quote Link to comment Share on other sites More sharing options...
TakinitEZ Posted February 11, 2011 Share Posted February 11, 2011 As long as they're respectful and courteous while they're here, well, they're being good patients. I'm the same with my doc...love him when I need him, don't hang around when I don't. -T Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 11, 2011 Share Posted February 11, 2011 I'm in the TakinItEZ and FunGuy camp on this one. Now I'm starting to understand how those two got their names. ;D (Also agreeing with dereksgirl, who at the rate she's going may be up for a CH medal of honor nomination ) Quote Link to comment Share on other sites More sharing options...
Jammin Posted February 11, 2011 Share Posted February 11, 2011 Speaking from experience, once you find your "cure" walking away for awhile can be a huge part of the healing process. I have taken a 7 year hiatus for personal reasons but have always been here in spirit. I left CH.com many (many) moons ago because I just got tired of the naysayers. Seemed like we had a near perfect solution and many sufferers spent the bulk of their energy trying to convince others as to why they could not fix themselves. I am just now starting to come back into the fold and plan on making myself avail if needed. I can also attest that just because someone leaves the forum does not always mean that they are not helping others in a less public way. Quote Link to comment Share on other sites More sharing options...
dereksgirl Posted February 11, 2011 Share Posted February 11, 2011 aw shucks... that's sweet Bejeeber... [smiley=dankk2.gif] Quote Link to comment Share on other sites More sharing options...
Brew Posted February 11, 2011 Share Posted February 11, 2011 Speaking from experience, once you find your "cure" walking away for awhile can be a huge part of the healing process. I can certainly appreciate that. However, I made a HUGE mistake. I started meeting some of the folks here and over at ch.com, and I found I wanted to spend more time with them. Now I'm fuckin' hooked. My absolute best friends in the world are here and over there. What does that say about my social life? Quote Link to comment Share on other sites More sharing options...
Jammin Posted February 12, 2011 Share Posted February 12, 2011 I get it Brew, used to hang on CH back when it first fired up. Finding folks who knew what I was going through and actually understood the condition was nothing short of life saving at the time. I have made some life long friends that I still keep in touch with today but again, sometimes (especially when you find your "cure") it does the soul good to step back. I have surprisingly met quite a few in the meantime and still hold true to the brethren that is the cluster sufferer. Peace 8-) Quote Link to comment Share on other sites More sharing options...
Hipshot Posted February 12, 2011 Share Posted February 12, 2011 Right on brew. Have you'll figured out why jamming has been away? He has a secret island that I am going to visit. Thanks for the post jammin. It is under a new thread by jammin...short term memory again...I can't recall the topic title but it's the only one there 8-) 8-) Dan Quote Link to comment Share on other sites More sharing options...
dereksgirl Posted February 12, 2011 Share Posted February 12, 2011 http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297450426/14#14 here you go Dan Quote Link to comment Share on other sites More sharing options...
Brew Posted February 12, 2011 Share Posted February 12, 2011 Jammin - It's all good. Different strokes, and all that. I certainly respect where you're coming from, and I can tell that you respect where I'm coming from, too. Stated another way, there are many times when I swear to myself I'm going to take a break, but there are always certain folks whose presence keep drawing me back in. Like I said, I'm hooked. (Say it with me, now: I can quit anytime I want) ;D Quote Link to comment Share on other sites More sharing options...
kaboom Posted February 12, 2011 Share Posted February 12, 2011 There's lots of valid reasons to slack off or not continuing to post here, but there is never an excuse for not expressing gratitude when it's due. Your post made me think also of the numerous charitable organizations - Red Cross, Goodwill, food pantries, crisis centers, shelters, soup kitchens, etc.- that have assisted countless people, yet are often in desperate need of volunteers and donations. Some people feel more obligation than others to give back. Some people may honestly forget about the help they have received. (Clusterbusters accepts donations [smiley=thumbsup.gif] ) Quote Link to comment Share on other sites More sharing options...
alleyoop Posted February 12, 2011 Share Posted February 12, 2011 I started meeting some of the folks here and over at ch.com, and I found I wanted to spend more time with them. Now I'm crappity smackin' hooked. My absolute best friends in the world are here and over there. I couldn't agree more Brew! For any of you out there that have never met another clusterhead, you really don't know what you're missing. Go to the next Clusterbusters conference -- you will not be disappointed. Bob Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 12, 2011 Author Share Posted February 12, 2011 After talking to my daughter, I have one small, final thought to add. I ask her from time to time whether she'd be kind enough to come on the board and express her thanks (which are deep and sincere) personally, instead of just through me. I realized yesterday that because her situation is relatively minor compared to so many (she's episodic; until her last cluster she was somehow coping by just enduring her attacks with no abortives or preventives at all; and the combination of seeds and O2 worked extremely well for her), she doesn't want to relive anything related to CH, and she doesn't want to consider that things could become worse for her in the future. She doesn't want to read, for example, about people for whom seeds or O2 don't seem to be working. This might be a failure of compassion, but she's young, too, and trying to deal with the rest of her life, which isn't an easy one, so I give her a grudging pass. I think maybe a lot of episodics might fantasize that the last cluster somehow might have been their last one ever. I know that in psychology certain things and experiences are recognized as "anchors" that automatically bring up good or bad feelings, and I suppose it could be true that for some people who have been at the board when they were hurting and desperate and scared, just returning to it stirs up all those bad feelings, even if they're okay at that moment. May we all hope that rum specials or BOL or licorice root or dereksgirl's investigations into the effects of the flu or some other breakthrough will mean that one day no one has to come here at all. I heard on the radio the other day that 50,000 Parkinson's patients in the US now have electrodes in their brains that reduce or even prevent tremors. It's going to happen -- and then we'll have to find another, happier reason to keep this amazing group together. Quote Link to comment Share on other sites More sharing options...
dereksgirl Posted February 12, 2011 Share Posted February 12, 2011 I think your daughter if very wise in her decision. The knowledge that Derek could become chronic, as he puts it, "scares the $**t out of him" (and he is not one to swear usually)(I know as a supporter takes an amazing amount of self control to not let all of this overwhelm me). A younger person would probably have a very difficult time coping with that fear. Why see her burdened with it, when hopefully she will never have to go through that. You are a good "information buffer" for her . Quote Link to comment Share on other sites More sharing options...
Bonkers Posted February 12, 2011 Share Posted February 12, 2011 I wouldn't worry too much about your daughter's sense of compassion. That shown to her by her father at a time when she was in total distress won't be forgotten. With a father like you, I don't imagine she'll turn out too bad. My son is still very self-centered and, as much as I've tried to get him to, won't spend any time on the board. He says that when he's got a HA, he can't; and when he's PF, doesn't even want to think about it. Hard to blame him. When we finally get this thing under control, I'm confident that his sense of gratitude will kick in and he'll become a strong, contributing member. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted February 13, 2011 Share Posted February 13, 2011 ...and I'm not too worried about Bonkers either, with a cool old man like you Ron. Not being queer or anything...but what are you wearing? 8-) Quote Link to comment Share on other sites More sharing options...
Bonkers Posted February 13, 2011 Share Posted February 13, 2011 Far out! Since you asked, I'm wearing that little lacy number you sent me (along with the edible undies, you bad boy). Ronny Quote Link to comment Share on other sites More sharing options...
Hipshot Posted February 13, 2011 Share Posted February 13, 2011 You mean eatin britches... I haven't heard the term "far out" in a long time. Haha ....back to the subject at hand, I am glad to have all of you guys as friends. I miss a few. Their absence is duly noted but I can't dwell on that. I'm thankful for what I have. Each and every one of you guys...far phuckin out indeed. Dan Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted February 13, 2011 Share Posted February 13, 2011 Not being queer or anything...but what are you wearing? Far out! Since you asked, I'm wearing that little lacy number you sent me (along with the edible undies, you bad boy). Ronny .......tsk, tsk, tsk........this from two of my best friends......lmmfao!!!!! Not sure what the hell that says about me!!!! DD Quote Link to comment Share on other sites More sharing options...
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