Absolutes, hope and MS

“This house is not for you. You should be in assisted-living. You will never again be able to climb the stairs, or even get into the kitchen, past all this clutter.”
 
I’m sure she’s right. But once I heard the word never I stopped listening.
 
Because in my mind, this is my only life. And I believe that really anything could happen tomorrow. No one knows the future. She can’t know the future. 
 
I could live another fifty years! And I do not want to live another fifty years in assisted-living. I wouldn’t want to pay for that anyway. I’d like to use that money to travel, maybe. Or make accessibility improvements to my current home. Or buy a lakehouse as a second home.
 
Never or always
 
In our house we say, “In case of emergency, break glass.” It’s important to us to have some sort of “safety net.” That is kinda how we plan. Just know what you’re going to do next if it all goes to hell. What is your next, first step?
 
Then don’t spend your precious life, the only one you have, obsessing over it. If you believe in a God or some sort of benevolent hand, it will all work out. If you don’t, you can just say “S@#t happens.” You’ll wake up tomorrow either way. You can start dealing with it then.
 
It happens to me frequently (although some may say I’m just framing these incidents in my life as “emergencies.”)
 
Just one example
 
As an example: the wheelchair.
 
Years ago I asked for a prescription for one from my neurologist. Next I went to a “wheelchair store” and saw that everything was like $3000 and up. And when I contacted my health insurance provider about it, they basically told me to come back after I’d met my $2500 deductible first. 
 
Since I was still walking, albeit with a cane, and there were other health issues going on in our house at the time, I didn’t think it met any level of urgent yet.
 
Some time later, we found a used one for free on Craigslist. As that seat wore out and the wheels began to deteriorate, we found a $300 one at the local Walgreen’s (although pricier than free, it was no $3000!). 
 
This year my most recent one did come from my health insurance.  It is very basic, but they bought it for $1260 and I only paid a copay of $4.13.
 
Time passes, s@#t happens, we live our lives the best, and happiest, way we can.
 
What I’ve learned this week

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43 hours without electricity

Or lessons I learned from the outage.
 
We lost power on Saturday night at 8 PM and it stayed off until Monday afternoon at 3 PM. 43 hours. Not anything like what other people have gone through, but disturbing nonetheless.
 
There were a few emails the day before, warning us that they would need to shut off electricity in advance of the powerful wind as a precaution. Given the recent, disastrous fires, it is easy to agree with the reasoning.
 
But really? Is this the best PG&E HQ could come up with in the two years since Paradise? I think this is a distressing lack of imagination! Even my cousin in Washington said “Somehow many other countries have figured out how to run the power lines underground. Perhaps they could draw us a little picture.”
 
OK, I do believe in climate change, both natural and man-made, but I also
living in Hayward and suffered through the Oakland Hills firestorm in 1991, so this is hardly a recent problem. If burying the lines was so expensive back then, we could’ve at least started saving then. Maybe had a bake sale? Just sayin’
 
The outage
 
We lost power on Saturday night at 8 PM and it stayed off until Monday afternoon at 3 PM. 43 hours. Not anything like what other people have gone through, but disturbing nonetheless.
 
With advance notice I was able to put fresh batteries in my flashlight and charge up my iPad and cell phone. In present day society, being able to text and listen to podcasts while the power is out is not a hardship. I was able to ration my battery accordingly.
 
Like camping
 
I am heat sensitive like many MSers but I do not use an Air conditioner at this time. Luckily if  I needed an air conditioner I could be driven to a local cooling station, for example. Usually in a community in crisis there are places that are running on a generator.
 
Another friend asked do you have a plan if you have to get out? Answer yes. In fact my husband keeps the gas tank in the truck above the half full level at all times, and has it already stocked with emergency supplies. So at a moments notice (well for me that’s more like 10 minutes!) we just have to get ourselves out the door and into the truck.
 
Debrief
 
Ultimately this could have been way worse. Clearly my exit plans rely on rely on friends and family to help me out of the house, or to drive me somewhere. I‘ll continue to mull exit options for the future, but I guess you never know what you don’t know until after the event.
 
So for the next power outage should get: hand crank radio, solar powered or battery-operated cell phone/iPad charger, maybe some cans of cold coffee and a battery operated fan?
 
Which makes me think of preparing for camping or a zombie apocalypse (digression: would zombies be a danger to me since I notice that mosquitos no longer will bite me now that I’m taking a DMT, probably my blood tastes bad to them, although that is anecdotal so could be applicable just to me…)
 
What I’ve learned this week
  • Hoarding is twice as common among people with MS versus the general population
  • Most of us have inherited some core limiting beliefs about money, like ‘Money doesn’t grow on trees’ or ‘Waste not, want not’ so changing your underlying programming is critically important in manifesting a different reality. Cairns, J. A. (2015). The abundance code
  • 30 days is a good length of time for developing a new habit. Scott, S. J. (2015). Exercise every day: 32 tactics for building the exercise habit (even if you hate working out).

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How could I get out?

When I read the news report about the recently rescued victims of the earthquake/tsunami, I realized that there was more that I should consider about our disaster planning.

OH and I have talked about disaster planning in the past, often when some major disaster happens. Like the San Bruno gas explosion and the earthquake and tsunami in Japan.

We both lived through the Calif. Bay Area earthquake in 1989. I was serving beer at a pub in the East Bay, getting ready for the World Series between the two Bay Area teams.  So we cheered at the first rumbles thinking it was a sign.  Then the TV screens went black and when they came back up we saw pictures of the bridge and freeway collapses.

OH was doing garage door service calls in S.F. at the time, had his last one of the day canceled by the dispatcher, and made it home to his wife and the two babies she was caring for just as the quake hit.  They lived on a top floor of an apartment building on the Peninsula at the time and were just able to save their dog and make a harrowing descent by crumbling staircase during the disaster but when it was all over, had lost everything.

In case of emergency, break glass.  The phrase has become shorthand for us, whether talking about creating wills or just visiting assisted-living facilities.  It conveys the idea of having a plan for any eventuality.  Be prepared as best we can.

We have agreed to set up earthquake kits and store emergency supplies. I have resolved to keep a pair of shoes under my bed (and to try to always wear slippers, although I really am more comfortable in bare feet).  [The importance of this recently became apparent when I broke a glass and couldn't move without stepping on the shards.]

So when I read the news report about the recently rescued victims of the earthquake/tsunami, I realized that there was more that I should consider about our disaster planning: “The 80-year-old woman's weak legs kept her from walking…out of the wreckage…”

Hmmm.  Yikes.  Weak legs.

I started searching for emergency preparedness for those with limited mobility.  I was oddly comforted by discovering the existence of emergency evacuation chairs, that there are even brand competitors!  OK, so I can get downstairs after an earthquake. [I truly believe that our stairs will weather anything; OH overbuilds for my safety!]

The other thing I'm thinking here is to focus on the strength of my upper arms. If I need to, I will be able to scoot around on my butt.

And the MS society suggests that "If you cannot move from your bed without help, store a fire-resistant blanket in your bedside cabinet, along with a washcloth or small towel that you can wet with your drinking water and place over your face as a shield against smoke."

I will keep looking but now I feel like it would be manageable.  Let's hope our plans are never tested in the real world.

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