I just have to share this...

...after 30 yrs of this ch crap youda thunk I would be prepared for ANYTHING......youda thunk wrong! Another lesson learned...CONSTANT diligence required for this nightmare....please take this to heart...it could be you.....

I've been chronic for the past 6 yrs...and for the past 1...remarkably light hits.....please forgive the naivtae but I thought....didn't someone? say "when you get older it....just...goes...away?" what a knothead!!!!!...it doesn't...at least for me.....

So then....I recontacted my O2 shop...for whom I've been a 25 yr customer...THAT'S when the ugly started...

"Sir, you are not in our system (they drop you if ya haven't been a "regular")....who says computers are "marvelous"?

Me: Can ya just look into your archive records? She: OK...pause, pause, pause....there ya are! Me....sighhhhhhhh!

Me: Ok then, I need 6 e-tanks...thank you very much. She: Oh sir, we DON'T do that....we can offer a concentrator! Me: WTF (internally)....externally...no, that won't do...I need e-tanks! Her: Well, I'll need to speak to my supervisor. After what seemed like an eternity...where I sweated bullets...she came back on and said.....ok, we can do that. Glory, glory hallejuliah...thank you Lord! Got my first 6 e's....

Now then....NEXT time...I called two days ahead...I am nothing if not prepared...and way smugger than I should be....6 more tanks please. Them: Oh, absolutely, see you on Wednesday.

Now the bad....I showed up...delivered the empties...and all ready to pick up my green headed beauties! Her: What call?... we got no "stinkin" call...and besides...we got no e-tanks available. The look and the attitude was...you can LEAVE now!
Holy shit...I almost started crying...and I haven't cried in years.....ifn you are down to your last tank and they say no more...you will understand....

THAT'S when the GOOD happened. The tech from the back room came out front to see what was going on....Him: "hey, why doncha come to the back and see what we got? (her: putz!). So, I went back...and he showed me M-60's and M-40's and said...would these work? I coulda kissed him on the fricken lips!!!!...been asking for these for 20 yrs! Told me...well, you'll need a different regulator...me: how much? Him: Puzzled...why would you need to pay extra?...take it...use it...return it when ya don't need it anymore. And, how many lpm do ya need? Me: 15-25.
Him: ooh...this reg can only do 15...but I can hook up a series to get ya 25.! I got 2 M-40's.He UNDERSTOOD clusterville...his name is Norm...I GOTTA do something for him....suggestions welcomed!

Don't know why this has to be so hard...we need a few more Norms....

Best,

Jon

You need to cry more than that, Jon. It cleanses the soul.

Tell Norm I love him!  And tell the girl at the counter . . . well, don't.  I don't use that kind of language, and nothing I use is appropriate for someone of her lack of character.  Fell free to tell her I said so.

I had an O2 supplier that was willing to put two H tanks in series for me, but Walgreens bought them out and they will no longer allow that to be done, nor will they provide me with O2 because they know I will use my own regulator and go beyond their 15 lpm limits.  They don't care that I have a valid prescription for 45 lpm.  They say they can't take the liability.  The company I just got a job with says they can't tell what you do with the tanks after they are gone.  All they can do is advise you on the proper use and then expect you to be an adult.  Therefore, I WILL act like an adult and will get the volume I need when I need it!  If you have any further issues let me know and I'll see if we have an outlet in your service area.

Jerry

Brew wrote on Nov 28^th, 2012 at 10:27pm:

You need to cry more than that, Jon. It cleanses the soul.

a few thousand kip 8's over the years and I figured I was all cried out...but then...It's a Wonderful Life, Miracle On 34th Street, Field of Dreams...a particularly moving BB King or Van Morrison song or Billie Holliday song...et al...and jonboy is dripping...Ima sentimental sucker-sap...no worries Bill  ;)

I figured we were good... ;)

Even though it's months since I've had a CH, I just can't imagine what it's like to not have O2 available in case.

Good on Norm for understanding and going the extra mile to get you what you need.

Quote:

I GOTTA do something for him....suggestions welcomed!

Call him some some morning. Ask him what time lunch is for him and take him to a nice restaurant.  Bring chocolate chip cookies in a tin (still warm)  and tell him a few hundred of your friends love him.  O.k well.. you can word that differently if you feel uncomfortable telling another guy that.  Also tell him that "woman" should be fired.   So glad the bad and the ugly turned out so GOOD, Jon. :-*

Brew wrote on Nov 28^th, 2012 at 11:16pm:

I figured we were good... ;)

...and HEY...I forgot to mention Ashokan Farewell, Amazing Grace, Battle Hymn of the Republic...and any of a number of Chicken Soup for the Souls.....I said I haven't cried in years (that's guy-mode I'm guessing)....and I also said I was a knothead...seems the latter is more correct.

I'm not a bawl-baby..but truth be told..."a guy who can't (or won't) cry"..is actually missing a really important part of life...thanks brew!

I am reminded of my brother in law...a really good man.... who I had never seen cry in 50+ yrs. He did...when my Mom died...and rather than make him seem weak or wimpy...it only made me love him more...for the MAN he is.

Best,

Jon

[/quote]
Call him some some morning. Ask him what time lunch is for him and take him to a nice restaurant.  Bring chocolate chip cookies in a tin (still warm)  and tell him a few hundred of your friends love him.  O.k well.. you can word that differently if you feel uncomfortable telling another guy that.  Also tell him that "woman" should be fired.   So glad the bad and the ugly turned out so GOOD, Jon. :-*[/quote]

Good golly Linder...what a wonderful thought! I'm gonna do right by Norm...thinking a gift certif to a nice restaurant for him and his.....cuz lunch with jonboy...BOOOO-RING!

...whatever...I'm surely gonna communicate to him the BEST part....."and tell him a few hundred of your friends love him." ....we all go through life hoping to make a difference in one or a few lives...he needs to know THIS!!!!

...and to add to the GOOD...spent the entire day (shhh, don't tell my boss) calling neuro offices...all very nice...and all offering 2-5 month lead times for an appt. I got desperate...I got mad...but I did it calm. Finally found a appt coordinator who got it! Initially he was so proud to offer me a 6 week out appt..."Ya know...that's QUICK?"  Shit-oh-dear...I know, I know...and that's really sad. Not sure what I said, but it was heartfelt and it got to him...put me on hold for 5 mins...came back and said...."how about next Monday?...we think we can fit you in". Boy howdy, I 'd crawl the 25 miles to get there.....ya gotta advocate for yerself...aint no-one else gonna....

oh boy...I'll try to rein it in...can ya tell I'm in cycle...the quiet man can't shut up...........................

Best

jb

Ya know, if you were to post Norm's name and the name of the company on here, probably a "few hundred" of your closest friends would write letters of commendation to his superiors..

But a lunch and a BIG HUG and thank you is a great idea. I don't even know him, but I love him.  :-*

follow up:

today made my weekly call to O2 shop...either conscience or Norm...but "front desk lady" above was falling all over herself to meet my needs...I'm thinking Norm said somethin'  ;D...bless his pea picken' heart.....

yesterday met my new treating neuro...bright, funny, fully on board...she GETS ch...gave me exactly what I asked for cuz as she said...."well, let's not mess with what works!"...and when I thanked her for her schedulers understanding and professionlism and compassion...said..."you gotta meet him then"...which we did (delightful young man). She promises to convey his performance to his supervisor...I will do same...

jonboy the clusterhead remains a VERY lucky man...I fought for this...but it takes 2 or 3 to tango....

Best,

Jon

Jon, that is awesome!  I hope the awesomeness just keeps coming!  [smiley=grin2.gif]

Doing the happy dance for you Jon, and saying a few thankful prayers for those who understood and helped.

    whoo-hoo!!!!!!!!

follow up follow up:

...for those of you who have been here for a while...this is old hat...I post this for those new to the "game"...and a game it is....play it well...play it smart.

Let's start with this: You gotta advocate for yourself...cuz aint no-one else gonna!"

...after fighting to get a neuro appt....and fighting to get O2...I'm in another fight. My company's next and ANOTHER frustrating new health insurance "provider" (I use that word lightly...sheesh)..is denying coverage for a) my visit to a specialist in the first place (you need to be referred...despite the fact I have been a patient of this clinics providers for 10 yrs...the chief left me...I didn't leave her...and simply moved to another doc in same clinical group)...and b) the Zomig Nasal Spray I have relied on for 10+ yrs.... allowing ONLY 6 doses per month (doc prescribed 12...I need 18).

I anticipated this...I'm not angry, frustrated, defeated, resigned, nor accepting. In fact, knowing what would happen, I proactively called ahead to inform of the typical script I would get, asking if that was acceptable, asking that if not...what did I need to do (like a doc's letter of medical need)...they assured me...oh no...that's fine. Well...bulls**t.

True colors showed...they WANT you to quit, they WANT to take your premiums and deny coverage, they WANT you to accept medical malpractice as "just the way it is".....they can't, they haven't examined you, they have NO right or STANDING to over-ride YOUR Doctor's treatment of YOU. Do...not...accept...it!

I'll win this fight too...it's just another impediment in this ch nightmare we all live...it's sad it has to be so difficult...but aint no-one stronger than a clusterhead...take it to the bank....get what you need, deserve, paid for, and earned. You can DO it!

Best,

Jon

and THAT, Jon is something that can't be stressed often enough to all the newcomers we get here on a daily basis.

Advocate for yourself and don't take NO for an answer!!!!