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Doing Disney with a Disability… part 2

Posted on October 26, 2017

This gallery contains 10 photos.

The first day at Disney, we moved from Port Orleans to Pop Century. We moved hotels early so we could go to Hollywood Studio and get at least a part of a day in at the park. We checked in, … Continue reading →

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Doing Disney With A Disability Part 1

Posted on October 22, 2017

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We made it. We made to Disney We made it through Disney (unscathed for the most part) We made it home (unscathed for the most part) And now here we are. We drove to Disney so Bear could take his … Continue reading →

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Dear IF September 22 2017

Posted on September 22, 2017

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Hi IF Well, we made it to Orlando. It was a hard trip but we are here. We checked in to Port Orleans Riverside today. Really really nice resort. I love the record in the rooms. We are in the … Continue reading →

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Dear IF, September 20, 2017

Posted on September 20, 2017

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Good morning, IF It’s a beautiful (if rather humid) morning in upstate Ohio.  Peanut and I are sitting on the porch listening to the fountain and the crickets and cicadas singing.  There isn’t a breeze in the air… nothing stirring … Continue reading →

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Pulmonary Fibrosis Awareness Month

Posted on September 7, 2017

  September is Pulmonary Fibrosis Awareness Month. Pulmonary Fibrosis means scarring of the lungs, but it is much more serious than ‘just’ having a scar on your lung. It means that scar tissue builds up (and continues to build up) … Continue reading →

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Inogen Customer “Service” rant

Posted on September 5, 2017 | Leave a comment
It’s sobering to realize how much people take the simple act of breathing (and not HAVING to be concerned about whether or not they will have the oxygen that they need when they need it) for granted.
I just got off the phone with ‘support’ for Larry’s Inogen portable concentrator. He’s been having an issue getting one of his batteries to charge in the external charger… it never seems to be charging but the ‘charging’ light blinks off and on off an on off and on red. One battery lasts 4 hours. One battery takes 6 – 8 hours to charge. He has three. Each one cost over 500 dollars.
The EVER so helpful man on the phone suggested that I plug in the battery and leave it blinking for a few hours and stick it back in to the concentrator. Do this for a couple days to see if it might just be a fluky little thing or if it really is a problem…
DO THE MATH
use the battery 4 hours until it is dead
Plug it in for 3 hours or so (while you are depleting the SECOND battery) and see if maybe the battery charges to half without you knowing it is even charging at all and without maybe guessing if it matters or anything. If it doesn’t HAPPEN to be charging, that means you are down to having 4 hours on one battery, one external charger you can use, two batteries to charge and nothing to assist with the next 12 hours.
But you will know if your 500 dollar paper weight will charge when it is doing blinky blinky blinky red light which isn’t what it’s supposed to do when it is charging.
Really? REALLY REALLY?
Do you think that anyone bothers to actually think about what they are telling you or do you think they just have a “your’re getting a call from a pain in the ass customer” script? I paid an OBSCENE amount of money to these people and after three months I should just play around and see if maybe we can get this baby to work…
It is warrentied for a year. Not a couple days. not even a couple months (and he’s had it almost five months now). A year. I don’t care if there are know little glitchy thingys that mean I don’t know if the battery might or might not be charging but we can hope and maybe it will maybe it won’t (but you don’t ACTUALLY need to breathe for the next few hours anyway, right??? )
I’ve never had a HUGE amount of patience with people on customer service lines that can’t be bothered to think at all for themselves or who get mad at me for questioning the sanity of what they are suggesting.
We are 2 weeks from going to Disney.  I will have to leave a battery in First Aid charging once it is depleted.  He has 12 hours of battery available to him at all.  If I can’t rely on the battery to charge in 6 – 8 hours, by the end of the day he will have no oxygen to get him back to the car.  I know this is a trifling thing if you don’t have to think about every breath you take but when you do it is a sobering thought.
Man was rather irritated that I wanted the battery warrentied.  I wanted to be able to rely on it working rather than hoping like heck it might work and taking a chance it might not.  I guess I was being difficult.  I know he thought I was.  He kept trying to get me to take a few MORE days testing out his little suggestion and see if maybe it is one of those little glitchy things (like in Wreck it Ralph?) or if it really REALLY needs to be replaced.
I honestly hope that the people who don’t get it never have to be in a position where they HAVE to understand what I’m trying to explain to them.  I sincerely hope they never have to worry about breathing (or hurting, or being able to walk, or what they eat, or when they have to take their meds to keep being okay or if they can drive because they have uncontrolled seizures or whatever the condition is that makes life less than ideal for someone).
But if for some reason they or someone they love happen to have something like this to deal with, I also hope they have someone with a brain and compassion to deal with as well.

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Hidden Gems

Posted on September 1, 2017

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Sometimes even when you’re feeling your crappiest you can still find hidden gems in your day. Yesterday was a case in point. Yay RA meds mean that every passing breeze is a mine field of germs. So when the boys … Continue reading →

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You Take Your Life In Your Own Hands

Posted on August 26, 2017

I worry. I know I shouldn’t. I know, once upon a time, I wouldn’t have. But the more bear walks with his Rolator (and he walks with it nearly every day, six miles a day) the more I worry. He … Continue reading →

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That time of month again

Posted on August 14, 2017

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It’s a full house at the infusion center. Along with the regulars, there is a chemo rookie today. She is pale and scared and won’t talk to anyone.. not even her gregarious infusion nurse. Being sick sucks? But… I wish … Continue reading →

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Dear IF, August 13, 2017

Posted on August 13, 2017

Dear IF It’s been a bit of time since I’ve written. Things get crazy sometimes, and sometimes you just don’t have the give a damn to do much at all. When those two things collide… yeah… it’s not pretty. Tomorrow … Continue reading →

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