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Happywoman

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Re: How do you still live life?
Reply #25 - Dec 19^th, 2009 at 6:54am

I admire you all for your courage and attitude. I wish I could write likewise. But I just can't. I'm into the first month of a cycle right now and the meds are unreliable. I'm either actually experiencing a CH or recovering from one, all the time. I can get stuff done, can spend time with the family, etc but going out is challenging. Because I feel so frail, sick, woozy, weak... doesn't anyone else get that?? Jeez.
Driving is not really an option, because the CH seems to affect my vision, balance, hearing etc. and when it hits it goes to 10 within two or three minutes, max.
Truth is, I don't really WANT to socialise or go rock climbing right now. I feel like hell.
Anyway good for you guys and your brave posts.
I think this thing is defeating me at long last.

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Mac_Muz

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Re: How do you still live life?
Reply #26 - Dec 19^th, 2009 at 3:18pm

Happywoman, Well what you need to do is get o2.

A great deal of these threads, if you read them, will show you many of us treat the problem with o2. O2 is all I use to treat this problem, and I can beat the beast down in a few moments each and every time.

So no I don't suffer like you do, unless I happen to feel like taking the beast on in it's terms.

Before I knew what to do and when to do it, I was a lot like you, beaten ragged. You are correct it messed with me to the point my vision, hearing and ballance were effected. I was totally miserable, but no more.

I am lucky since my hits come late at night this time, so my days are free. I make up for loss of sleep as I can, and I might get grumpy in day time when I have lost sleep, but most folks who know me know I bite anyway, and so don't mess with me unless they have too.

If you want to controll the beast, instead of it controll you, today you will get started getting o2.

If you have any garage men in your life you can go right now and get on o2 and knock the beast on it's butt.

Even a full blown Kip 10 will be crushed, it just takes longer.

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Happywoman

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Re: How do you still live life?
Reply #27 - Dec 19^th, 2009 at 4:51pm

Thank you Mac. I've read up about O2 and asked my GP who had never heard of it and asked me how I would go about getting it (!!) I told him, well, I need a letter from my doctor. We kind of looked at each other for a moment, then moved on from there. *laughs*
I think I will have to see a neuro. There is one here who suffers from CH himself, so he's ideal, but the waiting list is several months - by which time my cycle will have finished if history is anything to go by.
No, I have no garage people in my life! Actually I have almost no people in my life, ho hum.
Recently i've read about rebound headaches from 02 and that has put me off somewhat. I got rebound headaches from my meds last cycle and they were worse than the original CH. Unbelievable pain.
CH sucks.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: How do you still live life? Reply #28 - Dec 19^th, 2009 at 4:56pm O2 does NOT cause rebound headaches. Where, specifically, did you read that?
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Marc

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Re: How do you still live life?
Reply #29 - Dec 19^th, 2009 at 6:33pm

The term "rebound headache" is very often misused around here. A rebound headache is a specific animal unto itself but most people do not seem to understand this. Bob Johnson once again addressed this and posted a very good synopsis recently.

O2 does a good job of killing a CH, but does nothing to stop them from coming back. Having another attack is not a rebound - it's another CH.

O2 is an abortive, so people also need to seek an effective preventative if they want to reduce the number of hits.

In particular, people using O2 at lower flow rates appear to report "re-attacks" more than people using hyper flow O2(just made that one up - pretty cool term Grin

)

This is only an off the cuff observation - NOT the results of a controlled study. It also mirrors my own experience.

In my little corner of the CH world, high flow oxygen therapy provides me with the ability to put one foot in front of the other and keep going one day at a time.

Marc

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« Last Edit: Dec 19^th, 2009 at 6:38pm by Marc »

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Mac_Muz

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Re: How do you still live life?
Reply #30 - Dec 19^th, 2009 at 6:41pm

Brew wrote on Dec 19^th, 2009 at 4:56pm:

O2 does NOT cause rebound headaches.

Where, specifically, did you read that?

I'll back THAT UP!
No no no no re-bound headaches. This is why I use o2 in the first place exclusive of anything else!

For me it works like this:

The blooming thing wakes me up at some god awful hour. I decide whether or not I want to fight, or if I want to be lazy and take a part of the hit.

If not I get up, which 'we' do anyway, because layin there sucks.. I get dressed, currently in loads of feathers and wool since it is some wicked cold outside like -6 degrees below 0 F', and I walk out to the barn breathing cold air deeply to exchange the crud warm air I have breathed while sleeping.

All this may take me 3 to 5 minutes. The CH is just starting to get hard, maybe Kip 5/6.

I turn on the lights, my tank, check the regulator, and sit in a lawn chair, putting my feet up on a 12 ton jack stand.

With in 5 minute the pain is subsiding, with in 15 for sure it is gone, and I turn off the knob on my torch grip and go walking in the star light. I investigate new tracks in the snow for around 5 minutes still breathing deeply, then for good measure I return to the tank and set about a short while breathing more o2.

I don't take more than 10 minutes of real pain, unless I want too.

Then you could say I am strange.. No one I know does what I do, but I do it because i don't want to forget this sort of pain.

Sometimes I don't go get the o2, and once in awhile i will get mad and go have a beer, which is asking for it, but I am me, and I do weird things commonly. This weird thing is the only one that causes me any pain though.

There is NO after effects period.. Now I can't say that about imitrex injections a bit. Sure that aborts the pain right now, but leaves me logy and feeling as if I am drowning. The re-bound I get from that is extremely harsh, and it extends my season by weeks, if I just use that stuff once.

I am a very outdoorsie type of guy, and so is my wife. Other strange things i do is study and work at old woodland skills, so you get the right idea. I start fire with a bow drill and teach it, and do many other odd things under that heading.

I ride a motorcycle a lot in 3 seasons. New Hampshire USA is a tad too cold for that sort of thing in winter. But we rode across the USA and back in 05 into 06. 10 months on the road for no more reason than to see the USA.

I might suggest your doctor has no idea what you are dealing with. o2 and 'us' is very common.

Not like most my means are extremely meager, and I can't afford to run off and spend money on doctors, nor can I go just see one and not take all these tests. The end result is I just happen to be a mechanic of sorts doing what I want, when I want for a meager earning. Being such I gas weld, braze and silver solder, so own 2 torch sets and own one set of small bottle and lease a very large set.

I have all I need to deal with a CH, and to the point if I was alone suffering this wicked thing I would skoff at it.

I can and do beat the tar out of that beast on a mere whim..

There are proven ways to breath, these depend on the type of equipment you choose. If you decide to go primitive with this I am your guy... If not any else here except NAMVET and Marc... These guys use as primitive means like me. There may be others..

I don't understand all of why others use so-called medical equipments, but they do, and it works for them.

There is a lot of reading for you yet, but first I would get in command of some bloomin o2!

Marc knows about single tanks and single regulators i don't. My set up also contains acelelene, which I do not breath! far from it, but the result there is my lines are made side by side as 2 hoses, one red and one green. Green is the only color you want. o2 comes in green bottles, and my o2 gas is the very same stuff medical supply gas is.

I have watched tanks for both be filled off the same set up many times. Both are 100% o2, and nothing less is in your interest.

Sorry for the length, and detail, but I am a wordy old coot, and I don't take nuthin layin down...

Maybe with 02 you will break this, which often changes what the beast will do, but that SOB cries when I change with it and beat him down any time it rears its ugly head at will.

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Mac_Muz

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Re: How do you still live life?
Reply #31 - Dec 19^th, 2009 at 6:49pm

Marc cross posted with me...

he brought up 'another ch'. I get this.. Sometimes i end up in the barn 2 hours or so later and again 2 hours after that, for 3 ch nights. Not much fun, but it beats a size 12 boot in the butt.. or a Kip 10 in the head.

We are all hangin out there hoping somehow, somewhere, someone finds a blocker that will allow all of us to forget these CH's, for ever...

I myself look for ways, but so far I just end up with burned fingers... Grin

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« Last Edit: Dec 19^th, 2009 at 6:50pm by Mac_Muz »

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Marc

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Re: How do you still live life?
Reply #32 - Dec 19^th, 2009 at 7:12pm

Primary difference is that I cannot afford the delay of getting dressed and getting to the barn - gotta be NOW for me. I go from zero to sheer pain, fast.

The difference of 60-90 seconds is very real to me. O2 is my wonder drug but if I let a CH bloom I am screwed for 20-30 minutes. Hit one of the many tanks strewn around my place immediately and I'm back asleep in 6 minutes.

- Swing out of bed and grab the baby sized tank and open the valve as my feet hit the floor.
- Carry the tank toward the garage while sucking O2 like a banshee.
- Open the valve on the "mothership" T tank and grab that mouthpiece while shutting the valve on the baby tank.
- Spend 3-6 minutes remembering how bad it used to be without hyper flow O2.
- Close the valve, carry the baby tank back to my bedroom so I'm locked an loaded for the next one.
- Repeat as necessary.

Gett'n soft in my old age so I work harder to avoid agony than I used to but the lack of agony is worth it to me.

Marc

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Happywoman

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Re: How do you still live life?
Reply #33 - Dec 20^th, 2009 at 12:51am

Very very interesting posts. Can't remember where I read about the rebound headaches on 02 but will try to track it.

Now do I understand this right? Are you saying that I can go to some welder supply shop or something and just buy tanks of 02, and get the masks and stuff online from here? without needing a doctor's letter or an expensive neuro consult for a diagnosis I already have, and waiting several months to get it anyway??

Or have I missed some crucial piece of info here?

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Scott Wolter

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Re: How do you still live life?
Reply #34 - Dec 20^th, 2009 at 4:51am

As far as I know you don't need a prescription for o2, unless you need to write it off on insurance, or Medicare. I don't know what the difference between Medical grade 02 and commercial grade,used for welding, except the price, Maybe the threads on the tank are different, but I don't think so. You can get your mask and regulator at any medical supply store, and the tank,you can get there too, But you might be able to save a few bucks and a welding supply store. Either way you need to pay a deposit on the tank.

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Mac_Muz

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Re: How do you still live life?
Reply #35 - Dec 20^th, 2009 at 4:19pm

Happywoman wrote on Dec 20^th, 2009 at 12:51am:

Very very interesting posts. Can't remember where I read about the rebound headaches on 02 but will try to track it.

Now do I understand this right? Are you saying that I can go to some welder supply shop or something and just buy tanks of 02, and get the masks and stuff online from here? without needing a doctor's letter or an expensive neuro consult for a diagnosis I already have, and waiting several months to get it anyway??

Or have I missed some crucial piece of info here?

Yup...

Marc does something I haven't tried yet, and will breath right from the bottle with nothing else, if and when he must.

That isn't for everyone, exactly. Marc has learned to controll a bottle knob with some ability to controll the flow.

I think in the USA to get medical tanks, whether you foot the bill or some Ins does you need a doctor's script.

But in the USA anyone can go buy smaller bottles and lease large ones. No need to say any more than I want ...

Marc seems to know about tanks and regulators just for the single use of o2. I don't know about that, and as a welder I have never seen any equipment like that. So I don't know what this equipment would be for.

Maybe Marc will clue is in...

Like i said in any competent garage there will be torches.. These are used for cutting steel, welding steel, brazing, and silver soldering. This requires another gas as a fuel, which can be propane and or acetylene so far as I know. I only use acetylene.

But I make sure I don't breath even a faint bit when I am on o2 for a ch.

My problem here is wondering what o2 in a tank with no other gas is for, but Marc knows.

I can't afford doctors, the 3 hours drive, the fuel to get there the same for the way back, and just once I was diagnosed by a physician's assistant locally. I thought I had a sinus infection from hell, but with a few quick questions that gal was all over me having CH symptoms.

Being a bad boy I came up with some trex pills, a breather, injections kits on the black market.

From lesser to harsher i tried each item. I found the pills were useless. They don't act fast enough, and made me feel funky.

Oddly the breather didn't work, and I can't say why, but it did make me feel funky.

The injectors stopped a Ch Right NOW, but 6mg's almost killed so far as I am concerned, and then I rad about the Q tips. Still that stuff makes me funky, and brings on a rebound from hell.

I read and scoffed the idea o2 could work, and tried it a few times with out really meaning it. I set myself up to fail.

About the 5th time I was being crushed with an hours long kip 10, and tried o2 with more meaning and dedication, and in some long time i was able to beat that ch down, staying on o2 a long time, well over 1 hour.

Since then I find the faster I get o2 the faster I have no more ch till next time and o2 doesn't make me feel funky.

Garage men are not into asking funny questions.. They don't care about somebodies weird requests, at the same time they don't expect a law suit for helping.

Once away from o2 out riding my bike, I felt a ch coming, and went to a Fire Dept, and asked for o2, I was asked a few questions I mentioned CHead, and I was given o2 for the asking..

They planned to give me medical supplies they had on hand, but I walked by a set of torches and just moved a chair and helped myself.. They had already given me permissions. That did get some funny looks, but ya know when you have a hell pounder CH coming you really don't care much about funny looks.

Obviously I am no doctor, and I don't do things the way most people would, and haven't had some fancy pants pro tell me what is what, but I share the same things and o2 works.

I don't need a pro to tell me o2 works. And if i have something worse, then I will die from it anyway. I can't pay to save myself from any tumors.. I can't pay for brain surgery.

I have the idea if I had something worse o2 wouldn't work anyway.

I am sick of doctors anyway. I was born with phneumonia, and have forgotten more about that problem than most doctors know today. I am sick of being a guini pig to test.

In order for me to go seek out a doctor I must feel like I am on deaths door. I even fix my own broken bones and other ailments all the time.

Radical maybe, I might even die, but i am planning to die anyway, just not in any real hurry. The Democrates want me to die, and as a smoker I am doing my best to speed that up, but I fear they still have a wait on their hands. Grin

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Mac_Muz

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Re: How do you still live life?
Reply #36 - Dec 20^th, 2009 at 4:27pm

Scott Wolter wrote on Dec 20^th, 2009 at 4:51am:

As far as I know you don't need a prescription for o2, unless you need to write it off on insurance, or Medicare. I don't know what the difference between Medical grade 02 and commercial grade,used for welding, except the price, Maybe the threads on the tank are different, but I don't think so. You can get your mask and regulator at any medical supply store, and the tank,you can get there too, But you might be able to save a few bucks and a welding supply store. Either way you need to pay a deposit on the tank.

So far as I know the gasses are the very same.. I see both types at re-filling stations, but that has been a while, since I am so rural I exhange bottles. The lease allows me to pay for gasses inside a given bottle on the lease.

I own smaller bottles because large ones so far as i can tell are not sold. If I could buy larger bottle I would.

So I own the smaller type, and exhange them as well, so there is no point in my painting my smaller bottles to be pretty, since the new ones will be all chipped paint, and I would have to paint ever set I ever got.

So I own bottles that get exchanged. The brand new bottles were empty, and I exhanged them for full ones and paid for the gases.

About every bottle type has a different method and thread, but adapters are made to fix that. So far as I know, you can choose bottle x and have regulator Y and come up with an adapter, if the regulator and bottle threads are not a match.

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Happywoman CH.com Newbie Offline I Love CH.com! Posts: 13	Re: How do you still live life? Reply #37 - Dec 21^st, 2009 at 7:27pm Wonderfully helpful posts. Mac, your post made me smile and smile. Thank you. HW
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: How do you still live life? Reply #38 - Dec 21^st, 2009 at 7:58pm Here ya go: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or and Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Thank Marc for this. Potter
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sandie99

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Re: How do you still live life?
Reply #39 - Dec 22^nd, 2009 at 7:50am

Living with ch isn't always easy, but it can be done.

I know how simple it is to say on a PF day that yeah, just live it - I do the very same. Then comes ch and when it's here, everything stops for pain management.´But that is, really, the trick: when you're in pain, you deal with the pain and when you're not, you live your life.

Find your way to do it. Find the best way to make your life possible - even with ch in it. For me, it happened, when I understood that ch will come and go when it wants to, but I don't need to put my life on hold in the meantime. Sure, I've missed something things along the way and do some things certain way (avoid alcohol, don't stay up late if I can avoid it, don't eat certain things etc.), but I'm doing it MY way and in my own time. No ch's.

Just my thoughts,
Sanna

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Happywoman

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Re: How do you still live life?
Reply #40 - Dec 22^nd, 2009 at 7:14pm

This is a really helpful thread. Everyone is so upbeat!!
However. My experience of CH is this:
I'm in cycle at the moment. For me this means that I am either actually having a CH or recovering from one. I never have a PF period longer than about 2 hours, during which I'm likely to be asleep!
Yesterday, for example, I was collecting my daughter from trip to movies with her friends and suddenly a CH hit while I was driving the car - safe, NOT. As I go from 0-10 within five minutes, less usually, this was extremely hazardous to say the least. We got home safely obviously or I wouldn't be writing this, but it was the opposite of fun, driving in the dark with a raging headache and only one working eye.
So yeah.
Living your life and all that. Great, if you can do it.
For me it's a huge achievement to be able to get through producing a meal for the family. Sometimes I can't do it. I'm proud that I've done all the Christmas shopping, gifts and food, all gifts wrapped, house decorated, house even reasonably clean too! The kids (2 living at home) are wonderfully kind and helpful but sheesh, who needs it, a mother who's reliably out of action most of the time for 2 months. I know it's daft to feel guilty but I do. I wish I could be more fun and positive for them.
My headaches have changed in character this cycle, and instead of a great big 8 hour marathon followed by 16 hours woozy and feeble recovery before the next one, I now have bursts of 30 minute headaches followed by 20 minute reprieves which are not even close to PF, then another 30 minutes headache and blah blah blah.
There's no way I can come up with of living a productive life with this going on. My fervent hope is that having had six weeks of this so far, I must be mid-cycle if it's anything like prior experience, so by Feb latest I may be back to what passes for normal for me (i.e. PF and loving life and quite productive in many ways)
Sorry if this is off topic or in the wrong place or whatever. Just grabbing this window before the next one hits.
CH sucks

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Mac_Muz

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Re: How do you still live life?
Reply #41 - Dec 22^nd, 2009 at 7:15pm

Happywoman , Got o2?

Sandy, Yeah I get all beat up, but only when I can't get o2, or refuse to.

So far only alcoholic beverages seem to trigger me. That with either Fall or Spring.

I eat a boring diet, mostly bland rices, wheats, with fowel,fish and limited red meat. This is just the way I am, and have no wants of hot spicy, or much else.

I don't see any women other than my wife 'in season' and she isn't into make up stink. Shocked

I work part time sort of, as a mechanic/tech, carpenter, you break it, I fix it, sort of guy, so I get into keroscene, parts wash, diesel, and plenty of other harsh chems, like laquer thinner, acetone, and etc etc.. None of these trigger a ch for me, but I know they do for others.

I had teeth pulled that looked great, even after x rays, and fought dentists that didn't want to, so I know what getting beat up is.

Around here I go on and on with "Get o2" because that gave me my life back, and a weapon, as I see thing to taunt and play with the beast. I wouldn't suggest others do what I do there, but I highly reccommend they get o2 asap any way they can!

Even if it is a welding tank alone, although I would prefer it be regulated.

My ch's can move around from one season or in season. They might start at dinner time in early season and be hard in the wee hours at late season.

This season, all so far are after mid night, and hit about each 2 hours apart, so I can get 3 hits.

As of late I have been awake watching tv till 2 AM and even 4 AM, so the beast doesn't get to wake me up.

I grab sleep as I can in day light, and or do what ever I must to avoid the beast, unless i want to play. Even then I can still abort at will.

This whole time begining in Oct I have used o2, and only taken beatings i was willing to take. That might have been 5, just so i don't forget, what this did to me years ago.

I can't stop it, but I sure do controll it.

get o2!

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Mac_Muz

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Re: How do you still live life?
Reply #42 - Dec 22^nd, 2009 at 7:27pm

Happywoman , Got o2?

We cross posted... First of all you need a break. I have found getting a break can break a Ch into different kinds of segments.

Once you break the basic pattern there is no tellin what it will do, but it will do something different. Atleast i think so.

Now if you had o2 small enough to put in a car, all you should need to do to be safe is pull over and breath.

My hits are coming after mid-night, so I have no problems in day time, This Time...

I hope you can get o2 and break the beast once, then twice and so on. Yeah it will throw off some appointments, and it will screw up time. Then you must decide which is better, the pain and being totally un-able, or being near to PF and just late.

Oh Hell, yer a women you are expected to be late! Grin

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Happywoman

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Re: How do you still live life?
Reply #43 - Dec 22^nd, 2009 at 7:27pm

Mac, I hear you on the O2 ok *grins* and I've dutifully done reading up about it.

But there's a problem here where I live (Australia).

Firstly I was staggered by how expensive the 02 is, and all the accessories though of course you'd only buy those once.

But the actual gas canister things that you rent cost a fortune. I'm a single parent on limited income, ho hum.

In order to get them on medicare or through the health fund you need a neuro script (three month wait to see neuro plus big fat neuro fee)

and you need the doc to get special authority from govt
for you to access the therapy

the rules about 02 therapy are v. restrictive - check this quote:

• Entitled Persons requiring oxygen for more than four hours per day at a flow rate of greater than two litres per minute will be provided with an oxygen concentrator;

• Where flow rates of greater than four litres per minute are required, two concentrators will be considered but prior approval must be sought from DVA. In addition provision should include a regulation device; and

• As a basic guide Entitled Persons mobilising more than three hours three times per week should be considered for an Oxygen Conserver Device.

Did you notice the 2 litres per minute proviso? Encouraging, huh. Just at the moment, Mac, it's all too hard.

I don't at all doubt your rave reviews about how effective it is and all that, but the process of getting the stuff here is just - well climbing a mountain in stilettoes looks easier from where i'm standing right now. Or rather, sitting.

CH sucks

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Mac_Muz

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Re: How do you still live life?
Reply #44 - Dec 22^nd, 2009 at 7:37pm

Now there ya go building walls and thinking like a white wo/man.

You need to be clear with your self.

Are you going to go see a slew of fools who are known as doctors and pray you find the right one the first time, and so get relief, and write it off to some Insurance?

Or are you going to end the pain once and for all, for the better part?

Yeah I pay 200 USD each 4 years for 2 steel bottles leased, and one has O2 in it. I pay what ever the going rate for O2 is out of pocket, and i paid once in 1976 for a set of regulators and torches and again in the early 90s for another set of torches, with small bottles I own in theory.

No doctors, no insurance.. I paid for it.

see this Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Yeah maybe you will buy some stuff you don't need... maybe Marc/NamVet knows where you can get a single O2 regulator. It need not be 'medical', and neither are these guys..

In case it was you, who said they can't see the side bar menu, see this,
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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and scroll down till you see green bottles. The one I use most is the far right IRON kind.. That is the kind you want for home, and you will go lease it, for 4 years, or what ever they do downunder..

tell em Mac is gonna teach you to BRAZE, and 'ee's already got the torches and the Actelene

Now all this stuff might seem expensive, but there will be no waiting, and no more pain..

It is far less than a month of meds that may or not work very well, it is less than countless medical tests, and less than a few visits..

The USA has no programs... You either pay, have Ins and still PAY!

Get to a welding house... Car guys weld, boats guys weld, Hardware stores sell welding stuff. Tool warehouses sell welding stuff...

maybe harbor freight is doing buisiness in down under.

I might find out more from a Biker site I go to, as a few guys there are from downunder. I am about 1/2 the world away, but I know there is welders in down under and where there is welders there is o2..

I know this seems hard, but once you have this stuff you are going to wonder why you resisted...

My wife resisted me once, and she's hooked now Grin

The Pirate and his floosie (not yer merry santa HO Ho Ho)

See what happens when you resist me?
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Get o2

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« Last Edit: Dec 22^nd, 2009 at 8:05pm by Mac_Muz »

When all else fails read the instructions.

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Mac_Muz

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Re: How do you still live life?
Reply #45 - Dec 22^nd, 2009 at 8:15pm

•    """Entitled Persons requiring oxygen for more than four hours per day at a flow rate of greater than two litres per minute will be provided with an oxygen concentrator; """"""

That above won't work and isn't worth the powder to blow it to 'ELL, for us.. Not a problem any more is it?

•    Where flow rates of greater than four litres per minute are required, two concentrators will be considered but prior approval must be sought from DVA. In addition provision should include a regulation device; and

Same as above. no problem because it's no good for your use. Never worry about a device that isn't going to work for you anyway. Thar's no bloomin point......is there?

•    As a basic guide Entitled Persons mobilising more than three hours three times per week should be considered for an Oxygen Conserver Device.

Again it won't work, and what in jumpin blue blazes is that "Entitled Persons"

I never did understand socalist. GET o2, and I don't care if you need to out out red lights, bump off old geezers in the street, steal lollies from baby carriages or anything else. Get o2

Get welder's o2 since the big"they" have built a wall around something safe...

Just get it, don't do, or worry about anything else. Maybe after you can care for yourself then you can play that Entitled Persons game..

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Mac_Muz

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new hampster "eat seeds
or die"

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Re: How do you still live life?
Reply #46 - Dec 22^nd, 2009 at 8:23pm

Marc/ Vet this link
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

takes you to the $30.00 usd regulator at HF, but it isn't there for sale anymore alone...

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Northern has one for 89 usd...

Happywomen ,

ANYWHERE NEAR YOU IS THERE A DISCOUNT TOOL STORE?

Sometimes discount tool stores have inexpenisive welders gauges in whole sets. I am having a hard time finding 'replacement' regulators. I did in the last link.

Find a garage man and ask him about places for welding tools. Write down the store names so i can search Austrailia.

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« Last Edit: Dec 22^nd, 2009 at 8:38pm by Mac_Muz »

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Happywoman

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Re: How do you still live life?
Reply #47 - Dec 22^nd, 2009 at 10:45pm

Mac. I'm guessing you would be astonished to know how your kindness and input has affected me. Let's just say both eyes are watering and not due to CH. Thank you.

I will investigate garage/welder/hardware stores when the xmas lunacy subsides.

Your pirate attitude is admirable. Also your energy is contagious. And that's one handsome dog in the pic.

CH still sucks.

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Callico

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Re: How do you still live life?
Reply #48 - Dec 23^rd, 2009 at 12:07am

Happywoman, you are finding out what this site is all about. Mac going out of his way to help you find what you need and a way to get it, others doing the same for still others, and on and on. I know for newbies (not a perjorative, a description) all of this is overwhelming, esp when you connect it with a medical system that is not designed for your benefit. (And we are trying to copy yours Smiley

)

you will find a great number of people who will go out of their way to try to help, especially when you are showing an attitude of wanting to take control of your own situation. It is very easy to feel overwhelmed and helpless and then to feel sorry for one's self and not get up and do something about it. Be very careful to keep a positive attitude toward your situation as best you can. Please don't think I'm being critical, I'm not, I'm just cautioning you of the ease of getting yourself off track. You can do it! Is it hard? Very often it is, but life is hard. You CAN do it! We'll help.

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Happywoman

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Re: How do you still live life?
Reply #49 - Dec 23^rd, 2009 at 4:02am

Thank you Jerry. I do try to keep positive most of the time - it doesn't help to be glum. And I"m aware that self-pity is one of humanity's less attractive emotions.

Also, it doesn't help! Not one bit.

But every now and then, when the pain's been a bit relentless and I'm thinking the light at the end of the tunnel is definitely that of an oncoming train, yeah, i get glum. I can't do Pollyanna 24/7.

This site is amazing. In 40-odd years of having CH this is the first time I've had ANY support at all from anyone, let alone total strangers. Mac's positive rebel pirate attitude has fired me up with new determination to beat the beast.

Obviously everything's winding down here for Christmas, but when those boat builders/welders/hardware stores etc reopen after the break, this small and furious white-faced hedgehog woman will be beating a path to their door.

CH still sucks.

p.s. Jer 29.11

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