Jump to content
ClusterBusters
Sign in to follow this  
Galwin

Portland Conference, a life changing experience

Recommended Posts

After 7 years with episodic clusters and nothing more than a prescription for Imitrex, I finally have some hope.  Up 'till this past Friday evening, I had never met another Cluster sufferer, and now I feel like a member of one of the most supportive families that I could imagine.

Just like the diversity of our cluster community(and that of Portland itself), I'm so struck by the range of experience that the conference provided.  On one hand, there's the wealth of information by the extremely knowledgeable doctors that presented. Previously, I hardly understood what was biologically going on with me, but now I feel like I just completed a medical school course on the subject.  And on the other hand,  the outpouring of emotion... compassion, sympathy, optimism, brother/sisterhood is still choking me up as I write this.  There just aren't words to describe how much this has meant to me.

It's taken me about 6 weeks to finally type up this first post.  Partially because I was in the throws of my annual July episode, but also because of negative experiences on other forums.  Let me say that if anyone is apprehensive about speaking about what they're going through like I was..... Don't Be!  The folks that make up this community are open minded, intelligent and compassionate people that welcomed this newbie with arms open.  And if your style is a little more on the private or 1-on-1 side,  send a p.m. or come to the next conference like I did. 

I'd like to thank everyone again personally by name right now, but that'll take quite a while and ya'll know who you are.  But seriously....THANK YOU for the truly life changing experience!!!

-Daniel

Share this post


Link to post
Share on other sites

Hi Daniel,

Welcome. Good to have you here. Lots to read - check out ClusterBuster Files. Ask questions. Sometimes it takes awhile to get an answer, so be patient. Glad you enjoyed the conference. We couldn't make it. Maybe next year. When you get the chance, would you please provide us with a little more of your background.

My name's Ron. I'm the caregiver for my son, Michael. He's chronic but has had a lot of success with the psychedelics. He's 23 and just recently joined the forum himself.

Ron

Share this post


Link to post
Share on other sites

Hey Daniel,

So nice to see you here!!!  It was a joy meeting you and Nancy at the conference and I look forward to seeing and visiting with ya'll again soon!!  Welcome Home my new friend!!!

Dallas Denny

Share this post


Link to post
Share on other sites

Hey fellow New Yorker!  Glad you got to enjoy the conference, wish I had could have made it.  I keep promising myself that I am going to make one of them.  Need to get serious about that, I finally met a fellow sufferer and it was as if we had known each other for a lifetime.  Welcome home!

Share this post


Link to post
Share on other sites

Hi Daniel,

It was so nice to meet you.  Dan says to tell you "hey".  Maybe I can get him on here soon.  We look forward to seeing you again in Chicago.

Lee Ann

Share this post


Link to post
Share on other sites

Daniel,

I am a fellow Hudson Valley resident, I live in Lagrange how about you?

Share this post


Link to post
Share on other sites

Hi Lee Ann!  Tell Dan the Coors is on me when next we meet(hopefully soon)!

Thanks for the warm welcome to all the folks I haven't met personally here yet.

Birdman-  I felt the same way about meeting everyone, it was like we had already known each other for ages, what a rare feeling.  I spent years living on the other side of the Harbor from you in Brooklyn.

David- We're literally neighbors!  I'm in Hopewell near Shenandoah.

I'm sensing a New York mini get-together soon!

Share this post


Link to post
Share on other sites

Hey Daniel - I work in Brooklyn and live on SI.  If you have any get together ideas, definetely let me know.  Pain free wishes to all!!!

Share this post


Link to post
Share on other sites

Hi Daniel.  What a pleasure it was meeting you and Nancy.  I feel like you are part of my family now.

I found an extra regulator and mask and will try to mail them out by this weekend.  Be sure and get your doctor to write a script for oxygen and keep it handy.

Share this post


Link to post
Share on other sites
Hey Daniel - I work in Brooklyn and live on SI.If you have any get together ideas, definetely let me know.Pain free wishes to all!!! 

So for sure we have Daniel and I minutes apart, birdman (who I got to go to a ball game with) an 1 and 1/2 hours away and AO up in the boonies of Buffalo area. Now we just have to figure out a place to meet. If the Georgia and Texas people can do it, why can't the New Yorkers make it happen. :)

Share this post


Link to post
Share on other sites

There just aren't words Eddie, or is it "there just isn't words".  How about both.... x 1,000,000.

I kinda think of you as my Obi Wan Kenobi in the fight against ClusterVader.  My only hope is that I can pass on some of the support and love that you so generously showed me.

Maybe at some point soon we should start a thread specifically for a New York/New England meet.  Maybe make it a little easier for some folks to hear about it without having to just happen upon these specific posts?

Share this post


Link to post
Share on other sites
There just aren't words Eddie, or is it "there just isn't words".How about both.... x 1,000,000.

"there aint no words",

Whasa matter boy, you aint got no larnin? ;D

Share this post


Link to post
Share on other sites
If the Georgia and Texas people can do it, why can't the New Yorkers make it happen

And Oregon (folks too) LOL

O what a wonderful feeling, O what a wonderful day!

I just have so much happiness in my heart today!  Meeting all of you wonderful (fellow sufferers) and equally wonderful supporters was like being in Disneyland with only your friends, free for all!!!

Eddy, I still laugh and cry so hard thinking of the speech you gave.  My husband has a new understanding of our disorder and he really appreciated your candor.  Of course Dan and Le Ann's speech was also enrapturing being equally sad (pre-cluster busters) and hopeful!

So happy to have met SherrienAZ, Mastiflover, Galwin, Fungi, Darrel, and on and on!

What a happy birthday I had!!!!!

Share this post


Link to post
Share on other sites

Well young Daniel, you have joined the force, and the force is with you. You will never be alone in your quest again.

(That movie finally came to Arkansas a couple of months ago and they made us put on shoes to go see it)!

Share this post


Link to post
Share on other sites
(That movie finally came to Arkansas a couple of months ago and they made us put on shoes to go see it)! 

;D ;D ;D ;D ;D ;D ;D

Thanks Eddie, I can always use a good belly laugh!!!

DD

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×