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ClusterBusters
Brain on fire

To all attending the 2019 Conference in Dallas

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Woo Hoo!!  Sittin on ready and rockin on go BOF!!!  Looking forward to seeing old friends again and making many new ones!!  Looks like there's gonna be a lot of 1st timers!!

As she stated above,  if not this year then start making plans to make it happen next year.....the experience of a lifetime for a clusterhead and something you'll never forget!!

DD

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I noticed there’s an Apria Health very close to the airport. I was going to see if I could get tanks from them and bring to the hotel. Has anyone tried this in a city you don’t live in? Very excited to finally meet some people with the same “challenges” that can be a good life. 

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Yo Ken...for future reference....I regularly travelled while in cycle and either had O2 delivered to hotel or picked up from shop myself...CA, NV, OK...same price same great service as home. I used Lincare…. but noted from website that Apria has same/similar program. They ask for 30 day notice...

Best

Jonathan 

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...oops...forgot to mention...for those of you fortunate souls who will be conferencing...absolutely do not forget your mask and regulator (been there!...so did the redneck bag...read up on that just in case)...do NOT check in your bag (sometimes I think the airlines lose stuff just for fun)..and be prepared to explain "WHAT'S THIS!?" when TSA spots these items in your carry-on x-ray.  The ONLY time I ever got stopped and questioned in a screening check...…………..they were cool when I explained.

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On 9/11/2019 at 9:00 PM, jon019 said:

...oops...forgot to mention...for those of you fortunate souls who will be conferencing...absolutely do not forget your mask and regulator (been there!...so did the redneck bag...read up on that just in case)...do NOT check in your bag (sometimes I think the airlines lose stuff just for fun)..and be prepared to explain "WHAT'S THIS!?" when TSA spots these items in your carry-on x-ray.  The ONLY time I ever got stopped and questioned in a screening check...…………..they were cool when I explained.

Reporting my recent experience: To hopefully make my flight experience smoother, I alerted Delta about the regulators (never know...I’m bringing a regulator for both M and E Tanks); they told me not to expect any problems. Nonetheless, I am bringing my a diagnosis letter and a copy of my oxygen script.

 

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Back when I was flying more, I would run in to the occasional TSA agent that would seemingly have no idea what my regulator was and I'd get pulled aside to "discuss" this mysterious item. During a thunderstorm ground stop in Charlotte I was making use of the extra time to smoke a cigarette (long since quit), I struck up a conversation with a member of the TSA and eventually the conversation turned towards my regulator. She told me that the reason I was getting checked so much was that the regulators are hard to ID in my bag when going through the x-ray machine and thus triggering a manual check. Her advice was to place the regulator in the tray beside my laptop or shoes and she could almost guarantee I'd have no issues going forward. She was spot on....never a minutes trouble since then. Of course YMMV.

On a related note, if you are packing regulator(s) in checked bags, expected them to open the bag up and take a look. Just the way things are these days. I imagine they'll have a field day with the bag I'm packing with 6-8 different types of O2 equipment for my demo. No biggie......as long as it gets there.

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Hi, everyone! I'm Chaunté! My husband Zach & I will be heading to Dallas from THE Buckeye State (OH-IO!) for our first Clusterbuster Conference in just a few days! Seemed like fate that we have close family who live in Dallas!

Day 219 since the Beast decided to rear its UGLY head. It then provoked me to crawl up to my peacefully sleeping husband, I woke him up in hysterics and said " If I fall asleep now, I'm afraid I'll never wake up again. I think my brain is bleeding."  That first day was the 1 month anniversary of our marriage :blink:  I REALLY should have said " In HEALTH and sickness" instead of the traditional way!  (We're HARDLY traditional anyways!) 219 days of cluster headaches later................ we're headed to Dallas!!

Everyone told me in the beginning, "Stay strong. This won't last forever." About 2 weeks in, somehow I just knew this was going to be a longer journey than what I was being told. 

CH has (sadly) altered the person I was. It breaks my heart!

However, I'm overwhelmed with emotion when I think about meeting all of you who experience the life-changing pain that I do.  :wacko:  And can my poor hubster meet just ONE friend who really understands the 50 Shades of Crazy I go through during an attack? Haha Honestly, I'm more than blessed. He's basically a saint!  

Gahhhhh!!!!! I'm excited, nervous, overwhelmed, anxious, etc, to meet everyone!!! Is there an itinerary for the conference I can print out? 

XO,

Chaunté 

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Thanks for all the information. I am excited about the conference but I’m going to be at the Hilton (looks about 5 minutes away). I’m wondering if the conference will still let me check out oxygen tanks or if I’d be better trying to make arrangements for Apria to deliver to my hotel? Can’t wait to meet everyone... I haven’t said that in years!!

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G'mornin ya'll!

About to start loading up the car and get on the road....expect to get to Grapevine by mid morning!!  I went to a 3 day music festival with all Texas bands (ZZ Top was the headliner!) In Grapevine during the summer of '71 but that's another story entirely.....the parts of I can remember anyway...lmao!!

Already several folks there and quite a few more getting in this morning!!

Safe travels to all and see ya'll soon!!!!

DD

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