Monday, April 25, 2016


you interpenetrate my mesh. The tendriled gods
still climb my spine, stars are my tears,
birds wing my feet and lions lick my hair,
but the net of mankind wears so thin
that the old soul falls through, slick fish,
cynic butterfly, shadow of a crow.

-Ursula K. Le Guin

…Withstanding Death
Till Life be gone,
I shall treasure my breath,
I shall linger on.

I shall bolt my door
With a bolt and a cable;
I shall block my door
With a bureau and a table;

With all my might
My door shall be barred.
I shall put up a fight,
I shall take it hard.

-Edna St. Vincent Millay

None of us likes to think about the things that could go wrong, but by not planning for eventualities, we are doing a disservice to those we love.

Consider creating a Living Will with your physician. Be sure you keep a copy in your papers, signed and easy to find.

Keep a list of your conditions, allergies, and current medications on the refrigerator. This will enable emergency personnel to give you better care when you are too sick to explain things.

Wear a medical alert bracelet or device. I have a med alert ID that fastens to my shoe. It comes off with velcro, is reflective, and is great for those who don’t wear jewelry.

Get Life Insurance. It’s not as expensive as you might think.

I recently made sure all of my accounts and passwords were up-to-date and clearly written on an index card. That way if my husband needs to pay the bills while I’m in the hospital, he’ll know what to do. Make everything simple and easy for your caregivers.

Know when you should go to the emergency room. Do you have a blood pressure parameter that means you should get IV therapy? Do you know what heart symptoms mean you should be seen? Often, people with dysautonomia tough it out because we know the looks and judgment we will receive from health care providers that aren’t familiar with our disease.

One way to overcome this is to make sure your records indicate that you have spoken with your doctor, and they have TOLD you to come to the ER when things look/feel a certain way. This can go a long way toward being heard when you show up pale and in need of help.

If you are still able to work, get short-term disability insurance. If you end up in the hospital, you’ll still get a paycheck. This is vital and could save you a lot of stress and heartache.

If you don’t work, and you’re married, be sure your spouse had short-term disability insurance. Same reasons!


  1. An excellent post, when one gets to a certain age we do wonder about what could go wrong, be prepared but not to dwell on it I think is the answer.

  2. I don't have a living will, but I know my grandmother has been talking a lot about it with others in the family. Her husband didn't didn't take out any kind of insurance, which would have helped her after he passed. I found that to be pretty bizarre, as it seems to be common practice.

    His doings were intentional, and I think she wants to avoid similar situations and issues cropping up with her children, especially when there is a house to be concerned with.

    I've thought about a living will, but I don't have much, and no insurance is available to me (that I know of?), which I can afford. If I started having more complications due to my diabetes, however, I'd look into it a lot more.

    Never hurts to have your family and loved ones in mind on the off chance something happens. It can be infinitely harder if you don't, which may not seem so obvious at first glance.

  3. One way to overcome this is to make sure your records indicate that you have spoken with your doctor, and they have TOLD you to come to the ER when things look/feel a certain way. -- Oh, I hadn't considered this. Thank you!


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