Sometimes, I think that the only thing my sister enjoys more than giving me grief is turning her righteous fists of fury against those who screw me.
I realize it is more just jerks in general, but this is my blog and it's as life should be -- all about me.
On Tuesday, after hearing the insurer was going to take two weeks to approve my chair repair, she got involved. Mom had been doing the calling, and did everything possible.
Before she called the insurer, she called our Congressman and opened and inquiry. (Two older siblings suggested that.)
Then she called the insurer, and she told it about the inquiry and that if the motor died or caught fire someone was going to be held accountable.
The next morning Mom got a call that everything was approved
Mom called the wheelchair company, which said the replacement motor would take two weeks to get there.
Today, the wheelchair company called and is coming Friday to put on my new motor.
Everyone should have a sister like mine.
Wednesday, July 31, 2019
Sunday, July 28, 2019
Too much
My sister told me that many of her first-graders struggle before and after their birthday and thinks maybe it is the same for me.
Mom suspects my sadness is related to my broken wheelchair.
Both are contributing although that means that I have the maturity of a first-grader. But my problem is I can overcome one thing and a million more are waiting.
Mom suspects my sadness is related to my broken wheelchair.
Both are contributing although that means that I have the maturity of a first-grader. But my problem is I can overcome one thing and a million more are waiting.
Saturday, July 27, 2019
What works
When I am working with my PT student, he asks me before transfers: Where does your head go? The opposite way I am transferring, I tell him.
When I see my awesome PT, she always reminds pre-transfer to make sure my heels are behind my knees.
Both are good ideas, but they don't always helpmeet. Sometimes I find them downright dangerous.
I find myself struggling between what is proper technique and what actually works for me, at least mostly.
For instance, when I put my left heel behind my knee, my foot tends to slide. This is bad.
I am confident they'd both say do what works, but their ideas might keep me doing what I need to longer.
When I see my awesome PT, she always reminds pre-transfer to make sure my heels are behind my knees.
Both are good ideas, but they don't always helpmeet. Sometimes I find them downright dangerous.
I find myself struggling between what is proper technique and what actually works for me, at least mostly.
For instance, when I put my left heel behind my knee, my foot tends to slide. This is bad.
I am confident they'd both say do what works, but their ideas might keep me doing what I need to longer.
Wednesday, July 24, 2019
Not feeling very insured
I am on day 10 with a bad wheelchair motor.
The technician finally came last week, listened to my problem, then said, I'll order you a new motor.
That hasn't happened, though, because my insurer requires a doctor's note, as it did just to send out the technician, and my doctor's fax machine is apparently misbehaving and the office has not got the request from the wheelchair company for the note.
To make matters worse, really, it's possible, the wheelchair company refuses to send the request by secure email, which the doctor suggested. Because the important thing is not that you have a client afraid his will die or catch fire, it is that you are right and should prove it in a pissing contest with a doctor's office.
This isn't my only insurance issue lately, either.
Preapproval is ridiculous.
My doctor orders a sleep study. Nearly a month later, we call to see why it hasn't been scheduled. We're waiting for he insurer to approve it.
I finally find an incontinence medicine that works pretty well. My urologist likes it, too, and prescribes it. Here is what I was told: "Needs prior authorization. This drug will not be covered until you have tried other medications. Please consult your doctor."
I did consult him and he recommended the new drug.
Is it any wonder people want to overhaul the insurance and medical industries?
The technician finally came last week, listened to my problem, then said, I'll order you a new motor.
That hasn't happened, though, because my insurer requires a doctor's note, as it did just to send out the technician, and my doctor's fax machine is apparently misbehaving and the office has not got the request from the wheelchair company for the note.
To make matters worse, really, it's possible, the wheelchair company refuses to send the request by secure email, which the doctor suggested. Because the important thing is not that you have a client afraid his will die or catch fire, it is that you are right and should prove it in a pissing contest with a doctor's office.
This isn't my only insurance issue lately, either.
Preapproval is ridiculous.
My doctor orders a sleep study. Nearly a month later, we call to see why it hasn't been scheduled. We're waiting for he insurer to approve it.
I finally find an incontinence medicine that works pretty well. My urologist likes it, too, and prescribes it. Here is what I was told: "Needs prior authorization. This drug will not be covered until you have tried other medications. Please consult your doctor."
I did consult him and he recommended the new drug.
Is it any wonder people want to overhaul the insurance and medical industries?
Monday, July 22, 2019
Heart failure doc to Matty: You're dying
To be fair, he added, we all are. A comedian!
Me in particular, he said, you're not perfect, but doing OK.
One's heart, apparently, is not very efficient. I have an ejection fraction of 45%. This is just mildly bad because the normal percentage of blood ejected from the heart is in the range of 50-60%.
Me in particular, he said, you're not perfect, but doing OK.
One's heart, apparently, is not very efficient. I have an ejection fraction of 45%. This is just mildly bad because the normal percentage of blood ejected from the heart is in the range of 50-60%.
So my heart does suck, but just a bit, and while it may get worse, we are taking steps to help it.
I am starting a beta blocker, which he seemed to believe may help, not just with the symptoms of a fast heart rate but with my overall heart strength.
He also was strongly in favor of the sleep mask.
He wanted me too keep exercising, just not super-strenuously.
Finally, he wanted me to upgrade my Apple watch.
Saturday, July 20, 2019
Taking up the mask
Last night, I woke up about 2 and my mouth was really dry. But I couldn't reach my water bottle.
Unbidden, Fame began barking, then howling. My sister came down to see what on earth was happening.
I got my water.
My sister refuses to believe Fame and I are that in sync. Mainly because I was 3.6 miles away at the VHC Sleep Lab testing a bi-pap mask.
As she usually is, she is probably right. Plus, I owe her because she stayed in my room with Fame to calm her down.
It is true, though, that my water issue and Fame's barking happened at roughly the same time.
The big takeaway from my night is that the mask was no fun. It was hard to relax. I did it, though. I can do this. And with my canine mind meld, I may be unstoppable.
Unbidden, Fame began barking, then howling. My sister came down to see what on earth was happening.
I got my water.
My sister refuses to believe Fame and I are that in sync. Mainly because I was 3.6 miles away at the VHC Sleep Lab testing a bi-pap mask.
As she usually is, she is probably right. Plus, I owe her because she stayed in my room with Fame to calm her down.
It is true, though, that my water issue and Fame's barking happened at roughly the same time.
The big takeaway from my night is that the mask was no fun. It was hard to relax. I did it, though. I can do this. And with my canine mind meld, I may be unstoppable.
Monday, July 15, 2019
Stopped
Insurance companies are concerned about fraud. I am sympathetic.
But making someone whose wheelchair you purchased, meaning you were confident it wasn't fraud, get authorization from a doctor and yourself before allowing a repair seems less about fraud and more about trying to make things stupidly hard.
And if I were such an awesome fraudster, why would this stop me?
If, however, I were someone who relies on his chair to get around, it would totally stop me.
But making someone whose wheelchair you purchased, meaning you were confident it wasn't fraud, get authorization from a doctor and yourself before allowing a repair seems less about fraud and more about trying to make things stupidly hard.
And if I were such an awesome fraudster, why would this stop me?
If, however, I were someone who relies on his chair to get around, it would totally stop me.
Sunday, July 14, 2019
An uncle of firsts
We held part one of my uncle’s funeral yesterday. Friends and family gathered to tell stories.
It was good to hear them, well, read them. We bought in a captioner for me and my brother.
As I listened, I wanted to talk. I didn’t, of course. Even though it is my job, I am not much of a communicator, especially speaking. Also, I am not sure I’d have been able to get my words out without crying.
I wouldn’t have told them about how at the dinner table one night, he put my finger in a nutcracker and slowly started squeezing. I laughed until it hurt so bad I started crying and could not tell him to stop.
I also would not have told them he got my little sister to take a swig of vinegar, although I wish someone had told that story.
No, here is what I would have said:
For me, XXX was an uncle of firsts.
He was the first person I knew who had a dog (Doobie) and the first to raise puppies (with the crazy awesome Plott hound Peaches, the daughter of Bad Leroy).
He was the first, and still only, person to give me a ride on a motorcycle.
He took me to my first baseball game. The Orioles beat the Blue Jays in the 12th inning on a Doug DeCinces homer. I was 9, and somehow got up the nerve to ask a ball girl for a ball. I got one.
He also took me on my first fishing trip (not my first time fishing). It went poorly: no fish, no nibbles even, I fell in the freezing water then burned my hand on a woodstove. But he handled it all.
He taught me all I know about fireworks.
There’s many more firsts: He bought me my first aluminum bat, he was the first person I knew with tattoos or who sometimes slept in a hammock, he and his brother introduced me to the blues.
All three of my uncles (and countless others) helped me become the person I am. One wrote a letter of recommendation to my colleges. One introduced me to Canine Companions for Independence and a good friend. XXX was different.
He lived next to us with Gram, or behind us in his Airstream trailer, for pretty much my entire youth, so I saw him daily. I saw him act with kindness regularly. In this, I am lucky.
It was good to hear them, well, read them. We bought in a captioner for me and my brother.
As I listened, I wanted to talk. I didn’t, of course. Even though it is my job, I am not much of a communicator, especially speaking. Also, I am not sure I’d have been able to get my words out without crying.
I wouldn’t have told them about how at the dinner table one night, he put my finger in a nutcracker and slowly started squeezing. I laughed until it hurt so bad I started crying and could not tell him to stop.
I also would not have told them he got my little sister to take a swig of vinegar, although I wish someone had told that story.
No, here is what I would have said:
For me, XXX was an uncle of firsts.
He was the first person I knew who had a dog (Doobie) and the first to raise puppies (with the crazy awesome Plott hound Peaches, the daughter of Bad Leroy).
He took me to my first baseball game. The Orioles beat the Blue Jays in the 12th inning on a Doug DeCinces homer. I was 9, and somehow got up the nerve to ask a ball girl for a ball. I got one.
He also took me on my first fishing trip (not my first time fishing). It went poorly: no fish, no nibbles even, I fell in the freezing water then burned my hand on a woodstove. But he handled it all.
He taught me all I know about fireworks.
There’s many more firsts: He bought me my first aluminum bat, he was the first person I knew with tattoos or who sometimes slept in a hammock, he and his brother introduced me to the blues.
All three of my uncles (and countless others) helped me become the person I am. One wrote a letter of recommendation to my colleges. One introduced me to Canine Companions for Independence and a good friend. XXX was different.
He lived next to us with Gram, or behind us in his Airstream trailer, for pretty much my entire youth, so I saw him daily. I saw him act with kindness regularly. In this, I am lucky.
Tuesday, July 9, 2019
FA loses
A friend was taking about celebrating little victories, and logically I agree, especially in situations like mine when short of an act of God, a big victory is pretty unlikely.
The problem is, emotionally, I am quite bad at taking small victories. The big crap overwhelms the little win. Friedreich's ataxia pretty much overshadows almost everything. It's the New England Patriots of crap.
I need to do better, not weigh everything against FA.
FA overwhelms everything but friends (and family), but they aren't little victories.
The problem is, emotionally, I am quite bad at taking small victories. The big crap overwhelms the little win. Friedreich's ataxia pretty much overshadows almost everything. It's the New England Patriots of crap.
I need to do better, not weigh everything against FA.
FA overwhelms everything but friends (and family), but they aren't little victories.
Thursday, July 4, 2019
Heart hasn't failed yet
I got a good report from my primary care doctor on what the cardiologist said.
She more or less said the cardiologist was probably preparing for the almost inevitable heart decline that accompanies Friedreich's ataxia.
She said I could still ride, just to be aware my heartrate might spike.
She even suggested I get an Apple Watch that takes EKGs, so I know if the heart rate sis Afib-ish. Like I need an excuse to upgradE, but now it is medically directed!
She more or less said the cardiologist was probably preparing for the almost inevitable heart decline that accompanies Friedreich's ataxia.
She said I could still ride, just to be aware my heartrate might spike.
She even suggested I get an Apple Watch that takes EKGs, so I know if the heart rate sis Afib-ish. Like I need an excuse to upgradE, but now it is medically directed!
Monday, July 1, 2019
Heart Failure
I haven't written in a week because every day something seemed to happen that sapped me and left me wanting to curl up in a fetal position in bed. I didn't but also didn't write.
Then came yesterday.
When I had told my cardiologist about my latest ER trip, he seemed to think it normal. For some reason, he thinks I am out of shape. I am confident I am not.
I asked him yesterday if it was OK to bike.
He responded with a long email with several points. This is the one I latch onto: He wants me to see the Advanced Heart Failure team of cardiologists at a local hospital.
I find myself wanting to sing, "Ob-La-Di, Ob-La-Da," except life doesn't go on when your heart fails.
I am not sure why I struggle so much when I am screwed.
Then came yesterday.
When I had told my cardiologist about my latest ER trip, he seemed to think it normal. For some reason, he thinks I am out of shape. I am confident I am not.
I asked him yesterday if it was OK to bike.
He responded with a long email with several points. This is the one I latch onto: He wants me to see the Advanced Heart Failure team of cardiologists at a local hospital.
I find myself wanting to sing, "Ob-La-Di, Ob-La-Da," except life doesn't go on when your heart fails.
I am not sure why I struggle so much when I am screwed.
Subscribe to:
Posts (Atom)
