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
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!