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How do you still live life? (Read 7566 times)
steph45
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Re: How do you still live life?
Reply #50 - Dec 23rd, 2009 at 4:46am
 
I have copied and paste all the info you have put on here Jerry & if i dont get the 02 script from the Prof i am seeing tomorrow (23rd dec 9am) i will get my fella to order what i need of the net or ebay etc. My fella is a keen diver now for over 30yrs and he his medical trained to help a diver who may get the bends etc. We have 100% o2 in the shed  (as well has the usual for his diving) but have the usual valve of 4-5lmp.

I will not let CH rule my life, i work, enjoy sports, socialising,travelling but when it comes to get you - you have no choice but to ride it out and let it pass. I am lucky in the fact that usually i get the worst of the pain in the early hours and only on two occasions this year has kip 8/9 got me in the day.

There is no reason or way to understand how the routine of this this thing will go - though i am trying to see a pattern but then it changes.I am used to having control over most areas of my life but this wont let me have control over it.

Regardless to the above - i am so relieved and grateful to finally know what this pain is (have had now for 24yrs - prev seasonal & misdiagnosed has chronic sinusitis & hayfever /allergies ect) because in the back of your mind at times i have thought if they cant seem to find the cause of this agony then maybe its a tumour of some sort behind my eye.

I am still waiting for the correct medications and the o2 - so far the Proff i have seen has only gave me the imigran tablets to try, which obviously are no bloody good at all.

But i know that nearly all GP's know nothing about CH or medications used to help but also most specialists also dont and this wonderful site has given me all the information i need (which i have down loaded and printed off) to take with me tomorrow when i go for my appointment.

I am lucky that i live here in the uk - that we pay just under £8 per prescription (or if you have alot of medications you can buy a pre-paid certificate and then no matter how many medications you have, you do not have to pay anymore)

All these years to get diagnosed correctly, i thought at long last i would get the help and the information i need form the dr's etc but unfortunately that is only half the battle - but i wont give up. If when i go tomorrow i get no where - i will then write to the PCT to complain (i have kept my letters to the my own gp and the proff, copies of ref from the opticians/dental ect)

I count my blessings everyday - i know how lucky i am, yes this "beast" as you call it on here can & does bring you to your knees but we just keep getting back up... again....& again & again!!!!

I will keep my fingers crossed (& toes) for you "happywoman"  that you manage to get your hands on some o2 and its works for you - i have my hopes pinned on this stuff as well

keep your chin up - steph  Roll Eyes
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Marc
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Re: How do you still live life?
Reply #51 - Dec 23rd, 2009 at 9:02am
 
Mac_Muz wrote on Dec 22nd, 2009 at 8:23pm:
Marc/ Vet this link
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takes you to the $30.00 usd regulator at HF, but it isn't there for sale anymore alone...

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Northern has one for 89 usd...

.......................


Mac, that was just an example that was available super cheap at the time that I created that web page. At least two people on this board bought them.

If people look around, other deals can be found. In a pinch, they can spend the $90-$100 and have unlimited O2 flow.

An important point is that a welding regulator can be used on welding tanks AND "M" sized (or larger) medical tanks. 

Then, by adding a CGA-540 to CGA-870  adapter, the welding regulator can also be used on little medical tanks like the "E" size. It looks like this one that cost me $15.00:

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This makes a universal kit that will supply from tiny flow to waaaaay more than person could breathe from medical AND welding tanks.

It gives people the option of deciding how much flow they need in lieu of being stuck at some arbitrary limit.

Keep in mind that this info applies to the USA - other countries use totally different oxygen tank fittings that are not directly compatible with ours.

Marc


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« Last Edit: Dec 23rd, 2009 at 9:09am by Marc »  
 
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Mac_Muz
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Re: How do you still live life?
Reply #52 - Dec 23rd, 2009 at 12:19pm
 
oh, don't start Mac the nice guy stuff. as I am a biker when I am not a pirate, or a wild native american, or anything but a nice guy... No nice guy here....  Grin

I have no idea how to search any places near you.. Thar's a pretty good reason fer that, since I live 1/2 the world away.

I want you on o2 Right Now. I want everyone here on o2 right now..

And I don't care how anyone gets it.... Poly tics and doctors may not be in anyone's best interest.. I don't give a rats a$$ about either one of those types. A CH has nothing to do with power, or anything else it is pure unadulterated pain.

Maybe if one can come by a doctor who knows something worth the knowing, that is a different story, but many doctors don't have the first clue. Not saying doctors are totally clueless, but more that this problem isn't in their list of tricks.

What I am saying is we who share CH probably know how best to deal with ch, and the safest way is o2.

Since it isn't likely that anyone is going to fall asleep at KIP 10 then there is no danger of breathing too much o2.

The only real danger as I see things is FIRES... You take the slightest fire and add o2 and you get a real bad fire.

Since o2 can soak into things like long hair, clothing, bed clothing, and the like you must be sure no fires will get started,

O2 in a room heated with gas heaters, kerosene heaters, oil lamps and the like is a sin. So is lighting up a ciggy butt, and or going onto a basement/cellar where there is a gas water heater.

Or any other place with fire. Still some how at a kip 10 I don't see anyone setting up the barbi for ribs..

I KNOW what ch is... I know if you can break it once it will change.. The change won't exactly be welcome, but the break will be.

Once you get that break, and discover what the change is, you can learn to move with it, and so change the Dance.

Most people think of the dance as the odd things they do in a bad ch. I do, but I also see the dance as ways you move life to avoid and abort the ch.

A part of my dance is to move my life habits, so I either don't get hit, or take hits when I am mad enough..

I KNOW all anyone needs is 1/2 a welding kits, unless they also want to weld and braze.

I just don't care about what is and what isn't legal. Not when it comes to CH anyway. It isn't like steraling a car, or robbing a bank. You are not doing anything to anyone but you.

And all you are doing to you with o2 is killing some very real pain. o2 won't make you crazy, or even cause any after effects..

Well with in 30 minutes you will be nearly as good as you ever were, and then be able to function.

I KNOW that even though I dwell very rural, that with in 1 hours drive in any direction I can get a lease and a bottle of o2. I KNOW that with in that same distance I can find 3 discount tool supply houses for lesser expensive oxy actelene set up, and closer I can get sets at auto part stores..

The work comes in finding a single regulator with atleast 6 feet of single hose for me. So the costs are reduced for exactly what is needed.

Not much sence in getting another reg or bottle for welding if you don't plan to weld angel winds like Tom Hanks found in the Castaway.

On the other hand, so what if you get torch tips, a red line made to the green line and just don't use it....

I have no mask, but Marc clued me in to the mask isn't always used by ch'ers anyway and the kit from here also comes with a mouth piece. Evidently the mask can hurt someone with a raw jaw..

Maybe I would gain bennies myself if I went and bought a swimming snorkel, and stuffed it on my torch grip.

Then I could bite down breath in and let go to breath out. Might improve the quailty of o2 and it sure would be warmer that what ever below 0 it happens to be in winter...

Last night I was frustrated and so thinking in text... When I do that the sentances come out the way my mind works, sort of scattered..

I got hurt real bad back in 87, and ever since find alternate ways to get what I need.. When I need a part I thing about that part, then I think about what else looks like that part.

Then I go find the freest thing I can to make what ever I need a done deal.

There is no way around a big tank of o2. A regulator is a real good idea, but can be done with out.. Going with out means there is a risl of blowing o2 at 2,000 psi into your lungs Right Now, and I that would kill. Still it can be done.

Maybe next most primitive would be to slam clear tubing on the tank threads.. That gets you a distance and will lower psi somewhat.. Then you could tie a big thicker than a trash bag to the hose, and add another tubing to that bag. Then the bag would fill up and you could see it. Breathing off the bag with some psi still blowing in your face..

I can dream up all sorts of things from that point and so far the costs are the lease, and some hardware store tubings..

The thing is, this way is wastefull.

My torches have apx 60 feet of line so I can cut steel away from the wooden barn, with less chance to burn the barn down.

I don't waste a bit of the o2. It6 runs out of the tank thru a regulator, thru that 60 feet of lines, to the grip. The grip has a knob I open and close as i breath.

After my walk to test the ch level, I return to the barn and breath more 'just to be sure'. Then I close the tank off, and breath the last in the 60 feet of hose....

45 psi is about the same feeling as on riding my Kawii Nomad at 85 mph.... maybe a little less.

So 'we' want lots of flow that won't blow us up.
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Mac_Muz
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Re: How do you still live life?
Reply #53 - Dec 23rd, 2009 at 12:36pm
 
Marc, yeah I got the idea... The regulator price has changed like every single other thing.

'We' could make these part assemblies up, but then they may not work over the world and shipping is killer..

Of you live in Crimey's! Downunder it is best to find out what type of fittings are used there..

I know if it were me I would go to a car parts store, and a hardware store and look at what ever they have, note the prices, and then find tool discount stores and see the same things.

I  would buy what ever was the lesser in dollars, pounds, sterlings, yen, deutchmarks, or chocolate, and then take the rig to a place that has 02.. Make sure the fittings fit, and then buy or lease the tank ....for brazing..

I would say brazing, since a salesman is likely to want to sell a welder, a mig, tig or arc welder... none of which use o2.

A o2 regulator is a fancy little device.. I blew mine up in too uch cold once, and no one would rebuild it... I didn't have $$$ and so i rebuilt it myself and that was back in 1990, and it still works right.

There is a rubber diaphram inside the reg, about the size of a silver dollar or a 1 troy ounce silver ingot round..

I managed to blow that thru a 1/4"/6mm hole. I fixed it with a similar size hunk of dead car tire inner tube..

Like I said, I don't go with out needs much...
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