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Everything posted by 1961mom

  1. We're taking the good, the bad and the ugly! Well, maybe not the ugly, lol....but hopefully you're ready to fire off about 5 ideas you've had over the years and bump up the understanding of what we go through a notch or two via a single sentence. I bet there's some good ones in our threads over the years too! Cheat, go find them! lol One of the goodies passed out at the conference was the "Branding Project" flyer. NIKE has... Just do it! LOWES has.... Never stop improving! CLUSTER HEADACHES,_______________________? The Goal: To insert our own punctuation mark to better inform any audience (print, video and/or conversations) exemplifying, more clearly, the reality of life with clusters Here's why:
  2. Shocked! Joanna is working with a few of the ladies from the conference to rewrite some of the myths! Thanks for posting her articles. Searching the web for her articles was on my to-do list. It felt totally in sync! Cindy
  3. Super disturbing. wow.
  4. So true. I found myself thinking about all the "firsts" on my return flight and welled up like a big ole baby, and just knew the guy seated next to me was going to start "trying to help".... I tried really hard to turn and ignore but it's practically impossible squished between this guy and the window person. He amazed me and said, "I think those are happy tears, am I right?" OMG. BG, thank you. You've nailed the experience for me and the hundred or so others who made it to the bestest of the best CB conference ever...and the guy on the plane? Well, he wasn't quite the cherry on top of the sundae but damn, I did bust out in a real boo hoo session at that moment too!
  5. Well now you'll be beholding to tell...look forward to the scoop at the conference!!!!! ;D
  6. Shocked! That's our doc!!!! Robert Shapiro is the doctor (and president of The Alliance) who was in the meeting with Bebee & I with the NIH and SSA. He was definitely doing a little jig as we left that meeting!!! Good eye
  7. Hi guys, Here's the response...If he's not BSing me, lol...it seems as tho our particular Angel fundraiser timing is smack in the middle of a site remodel going on at Causes. Since he doesn't offer a bug work around, if I may, I'd like to suggest 2 options. http://clusterbusters.com/?page_id=305 If you choose the website and use the donation button please send a note to me so we can add your Angel Wings to the Banner. Or second, snail mail with a note saying you're an "Angel" Clusterbusters P.O. Box 574 Lombard, IL 60148 Thank you CHfather and spiney. Getting your feedback was really helpful. I'll do more research on options for sure....Cindy James (Causes Support) Aug 21 10:27 am (PDT) Hi Cindy, Thank you for the taking the time to provide such detailed feedback. We're sorry for the issues you experienced with your campaign. We've always allowed for donations to be made without logging into Causes or Facebook, but unfortunately it looks like our updated campaigns have a bug where this isn't allowed. We're terribly sorry for this and thank you for bringing this to our attention. We know that we need to improve the sharing experience too. At the moment, sharing of campaigns is done through posts. If you click on one of the posts on your campaign, you can click the share button on the right side of the post page and share through Facebook. We're in the process of integrating more deeply into LinkedIn and Twitter as well. I understand the frustration with links as text too and have passed this feedback along to our Product Team. We're working on polishing the site experience in time for our full upgrade the end of next month so that all of the pieces are working with one another and developed. We're sorry again for all of the confusion you experienced with your campaign. Your participation on Causes is highly valued and we really appreciate your feedback. If you have any additional feedback for our team please let us know. Thank you again for your honesty. Best, James Community Support Lead Causes Support
  8. Sorry guys I just got the email sent out today and included both of your comments as my feedback. I asked specifically if they had an "opt out" option for this info gathering quest they seem to be on. I've been a member of their site for a few years. It's a real pisser when things work and yet for some reason they decide they need to change it! They did share that they're doing some major changes (which won't roll out until September....of course!) I'll be looking for other fundraising site options to compare features before the "Headache on the Hill" fundraiser fo sho! Yeppers, spiny...if you would like to send via friend that would be wunnerful, wunnerful. Again so sorry. Cindy
  9. UPDATE Check out the $3000 gift Clusterbusters received today from an anonymous donor to our "Angel" Fundraiser! https://www.causes.com/posts/796157 [move] [smiley=engel017.gif]Â Â Â Â Â Â Â Â Â Â Â Â Â Â [smiley=engel017.gif]Â Â Â Â Â Â Â Â Â Â Â Â Â Â [smiley=engel017.gif][/move]
  10. You know, I wasn't aware that they asked for all of that information hmmm....no spot to opt out? I will send them an email right away. It seems to me there should be a way to donate without having to share other than your credit card info of name, billing address, state, etc. Once I hear back, I'll post right away. If you'd rather send through the Clusterbusters website donation area, I'd be glad to add your CB username to the Angel Fundraiser updates on "Causes" and write a short note too....let me know. And thank you!!!!! Cindy
  11. [move] [smiley=engel017.gif]       [smiley=engel017.gif]       [smiley=engel017.gif][/move] Support your buster buddies by donating to the "Angel" fundraiser! It's similar to the Miracle Network fundraiser where you buy a hot air balloon in convenience stores, your name goes on your balloon and the balloon is displayed for all to see....only with ours you'll get a choice between angel wings and a lightening bolt! [smiley=engel017.gif] Somebody requested the lightening bolts last year. We liked the idea and so we kept it! [smiley=engel017.gif] Here's the link....remember to share with your family, friends and coworkers. The progress Clusterbusters continues to experience has taken this family to a place where we no longer need to remain in the closet about how our lives are effected by this diagnosis. http://www.causes.com/campaigns/485 [move] [smiley=engel017.gif]       [smiley=engel017.gif]       [smiley=engel017.gif][/move]
  12. Reminds me of this evenings experience.... But I persevered. Waiting for the diatribe to be expelled. Waiting for the silly comments to fade. Still more waiting for the horror stories of "my sisters nephew's best friend is still in a mental institution..blah, blah, blah. Waiting. Goading. Inserting facts. Pleasantly smiling. Responding calmly. Finally 45 minutes has gone by and the real discussion began. So worth the waiting. Thanks Shocked. I enjoy the links you p0st.
  13. I'm just imagining, based on my own 5 yr chronic life (the first 2 yrs on verapamil, gabapentin & O2 then actively busting the last 3 yrs) as to what Tony's friend, Mika is feeling. I'll try to relate it back to Bob's question..... I haven't done the Ketamine drip (yet). Without knowing I was about to find a gem in a neurologist, I had my own treatment plans in motion......the timing of my first appointment with Dr. Estavez coincided with a "medication holiday". I'd been on 1mg-2mg per day of Sansert (methysergide) for the previous 6 mos. 98% pain free during those 6 mos! Ah, but that damn drug holiday was looming so before my appointment I'd managed to find the one alternative treatment I'd never tried, LSD. Dr. Estavez agreed, responding well to Sansert was a great indication for efficacy with LSD. So that's been my June-July treatment plan! 3x! I cannot convey in words what it feels like to have this guy on my team!!!! What I do know is I don't have to 'splain those feelings to this crew 8-) Here's the bio on Dr. Miguel Estavez at Oregon Neurology, Eugene, OR There's more cool stuff about meeting Dr. Estavez.... I'll start a new thread to share more. http://www.oregonneurology.com/html/physicians.html I think the transition out of ones normal state of ill health (lol) into being a "patient" with this condition especially, drives us to seek out medical professionals to have in our toolkit. The wrong one is incredibly damaging IMHO, mainly because of the hope lost. But also because of the very real danger of prolonged neuronal reprogramming, prolonged use of medication and the nasty side effects and worst of all, going chronic. Fragile, fragile, fragile moment in time when this occurs! Mika's story is a testimony to "you never know if your first attack is day one of being chronic". This community held my hand and lifted me up tremendously during those days. And now your friend, Mika can experience the same new hope, especially because you went the extra mile of reaching out to him, his support person AND you told your story to the media! Wow. I love that you did that Tony!!!!! This is the crux of my irk celebration!!!! tee hee Jerry, you do bring up very interesting point and to me not at all crazy. I think some of the "busting fans" who post in an almost zealot fashion on other social media sites intrinsically understand what we're talking about here.....but it's still a balancing act, isn't it? Feeling the need to have a medical professional on your team based on the pain is So SO SOOOOO real. I don't think it's a point that can be ignored. Spreading the message of treating yourself doesn't reach those folks in the "Isolation Phase". In the "Isolation Phase" you don't know you're isolated! After all you're seeing a doctor, right? In my mind, isolation occurs most often to the baby boomer generation because we weren't nursed on "Google"! What I see happening and love, love, love is watching the younger generations of newly diagnosed CH patients, who've been trained to use Google almost from birth, skip the "Isolation Phase" (which does include a doctor, but doesn't include the internet patient group). A phase which unwittingly brings about playing one of most perilous games of Russian Roulette.. Thank God this is phasing out! These guys get into the "Connection Phase" as second nature...without having to experience what us other poor bastards, including Mika who didn't have this second nature "Google" programming developed. Anyone whose been lucky enough to remain episodic during this transition is IMHO at risk of repeating my hard learned lesson. My own 9 year remission period quadrupled my thinking that "This too shall pass" and I was more than willing to try the newest medication, which was verapamil, prescribed by my doctor. In fact it's what I did count on. I remember quietly assuring myself that by the time a new cycle started surely there would be a new miracle treatment available from my doctor. Who knows where I'd be today if on day 1 of my CH return I'd Googled clusters, found CB AND then trusted all the internet posts. Boggles my mind! Of course, I pray Mika's results with the D3 and other alternative treatments work quickly. I've seen others who've reported it did within days of trying it after 38 years of being chronic. Having an open and honest discussion regardless of the time it takes to get back to a pain free life is crucial to Mika sticking with these alternatives. This is where this community's knowledge, support and generosity completes the circle. Everything matters.
  14. Thanks for sharing the Fact Sheet Larry! I'll be sure to share this often on other social media sites....Looking forward to seeing you. Cindy
  15. Greek tragedies have absolutely nothing over on the cluster patient and their amazing stories of what we can live through! Shit!!! I'm so happy you recalled Doc Larry and made that call. I'm pretty sure he's speaking at this years conference. Hope you can make it bubblesup. I'd love to shake the hand of a warrior/survivor!!!!! Cindy
  16. Tony, It's never overlooked by this CH patient how you continue to share your gifts, talents, knowledge and hope while balancing your own reconciliation in the area of medications and their side effects. Every single sentence resonates with your dedication to always look forward. To that point, I wanted to tell you how it's an honor to know you. Half of this mans battle has been addressed just by the connection he's made with you. Hope is 100% necessary. It's what keeps thousands of CHer's who have finally made it into the "connection" phase alive, but beyond alive, we're also living a purposeful life again. Managing the pain becomes part of the life we're living. For me, the hope instilled in me from you and our fellow supporters is an immeasurable component. I credit this support system to returning the joy of life. I've also come to understand the importance of measuring the success's with self love and patience. The goal of being pain free is always there, however I've come to understand that the brain, the neuronal system, the smooth muscles and it's system and both the venous and arterial systems have all been changed. Every single attack is in effect, a reprogramming of patterns by these systems. I didn't understand this aspect until I found the wonderful new neurologist/headache specialist just a few months ago. His first question was, "Cindy, how long has this been going on?" When I told him 5 years, the look on his face combined with the words of his next sentence, emphasized an urgency he clearly understood that up until that moment, I had not connected in my own head. God, how silly I feel now. Really, I just didn't realize what was actually happening in my own head. New paths of norm were being created with each attack! Because I'd always been episodic, and believed that the cycle would run its course and I'd be pain free again, I just didn't make the connection regarding the repeat information being instilled to be my new norm! His sentence was wonderful. He said, "We've got to get you hospitalized so I can run a Ketamine drip to stop this pattern of behavior now!" It was an incredible moment of clarity. This man got it! And not only did he get it he was freaked out by the sheer number of years I'd been reprogramming! So I tell you all of that so I can tell you this; This man is blessed to have you as a supporter. Yes, I am mindful of detoxing and all of the knowledge shared within these boards, but I believe if ever there was a time to implement the power of placebo it is now. If I had to redo all of my "detoxing", I now know that I'd do it with a dose of magic. Be it RC seeds, mushies or LSD. My memories of detoxing are the absolute worst days of my life and I believe, psychologically astounding fear played a role in the process. Even if I did know the goal had purpose, the reality was, for me, that detoxing took a toll I will never, ever, ever forget. To this day, I know I would have rather dosed (without detoxing) and believed that some of the medicine was getting through with an understanding that treatments would continue as a part of my life until the day the reprogramming of all those systems had been erased and I was the woman I had known years before. I'm still working on being that woman and that's why I share what I share today.... much love to you. Cindy
  17. Jerry, your post mimics my experience with Andrew...my life changed forever because of his genuine concern and frankness regarding the CH patients. And then yours Brew, stunned. Very sad.
  18. I need to book mine! Insert me in the Everyone~ Jeff See you in September
  19. This device can cause a CH as well, so I read in a related article. I couldn't find the article (sorry) but it's fairly new on the market. I just wish the surgery community would spend that money on BOL [smiley=thumbsup.gif] http://www.google.com/patents/US8394075
  20. I'm hoping they'll be available at the conference? Bob? Kim?
  21. Thanks Bob & Kim! It's nice to read the 'cluster stories' are being shared and are making a difference. Sounds like the debut distribution went to the perfect audience. I can only imagine what it would be like to be correctly & empathically perceived (as a patient group) by the entire world as you share we were by this sampling of caring people. Also, thanks to Billy & Becky. You 2 amaze me with your steady contributions to the CH patient group. I've got to believe in the following quote (and I have no idea who said it, I only know it was a WWII commanding officer) "With these troops, on this day, with this armament, in this theater, I can win this war." Much appreciation to Clusterbusters!
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