I recieve lots of invitations from lots of wonderful friends to hang out, attend an event, go out to eat etc.
I always put on a brave face and try to join in as much as I possibly can, but I know my friends get disappointed that I can't always say yes.
Sometimes it's because of a lack of time and the general exhaustion that goes along with having a chronic illness.
A lot of the time, it's because being attached to an oxygen source 24/7 is really hard work.
Oxygen is funded on a State level and the rules are different in each and every State.
It's only available after you have been oxygen tested, and an application has been completed by a Respiratory Specialist, and then approved via the Department of Human Services - Aids and Equipment Program.
The maximum dollar amount funded per month is $200. This amount is supposed to cover the following:
Rental - Oxygen Concentrator (large electric machine that converts air to O2)
Rental - Portable Oxygen Bottles
Rental - Oxygen Conserving Device (which fits to the top of the portable bottles)
Rental - Oxygen Trolley (to drag your bottle behind you as you get around)
Portable Oxygen Bottle Contents
I took the option of purchasing my own Oxygen Concentrator (at a cost of around $2500) so that I could receive more funded portable bottles per month.
But, even with that, I'm at the maximum limit per month of 10 bottles.
If I'm very frugal with the flow rate (I use 2 litres per minute resting and 4 litres per minute walking), then I can get a bottle to last for a a maximum of about 10 hours.
So, when you do the math, I can leave the house for 10 lots of 10 hours. Make that 10 days per month.... out of 31.
Once I run out, I have to pay full price of somewhere between $17 and $25 per bottle, depending on the size and the supplier that I order from.
So if I decide that I'd like to go out for the day, and I've used my allotted oxygen for the month, I need to budget for the extra cost of leaving the house, but I also have to plan way ahead of time to even get a delivery from my supplier. I also need to check to ensure that I have enough oxygen in the car to cover me for the amount of time that I'm planning to be out for.
It's extremely frustrating, but I just really can't do everything I want to do.
8 comments:
I never realised you had to do this. That must make it really difficult when doing shopping, etc that requires hands for more than just your own oxygen trolley. Hugs for you. Cherrie
What an effort just to leave the house, if you have the oxygen to.
We need to have some fun parties online for you!(not sure how yet??)
thats horribly frustrating :/
i think some people don't stop and realize that when a person has a chronic condition, that they can't always do "normal" things that other people can do. for me, its steps. if there are lots of steps, not going to happen :p
$2500?!?1 thats a lot of money o.0
I find that completely disgraceful - an oxygen allowance? Holy cow, is that putting a price on life? Feels like it. I can only imagine your frustration at the limitations placed on you - from what I see you do more in your life than a person without a chronic illness, so that's amazing.
Frankly, I'm amazed you achieve as much as you do with that sort of expense and potheration. You are a superstar.
It's just amazing when you see it all written out like that. We never had to pay for oxygen as Imogen was always in hospital when she was on it. We did have to buy her a wheelchair though(even though she was living in hospital for 6 months while she used it), as both hospitals we were in (children's hospitals) didn't have enough child sized wheelchairs to go around. In the end our surfclub arranged for some of their families to all put in to buy her one. You don't really have any idea until you're put in that situation how seriously underfunded the medical system is.
And as I always say - you really need to have your wits about you when you're dealing with the medical system! Having an allowance seems nuts. If you don't have the money to pay for more oxygen, what are you supposed to do?
Thank you for informing those of us who don't know about these things.
That post made me stop and think, Cam .... Not quite sure how I'd cope if I could only go out 2/3 of the time. It's amazing what we all take for granted and quite appalling that you have such limits put on your life because of a quota system.
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