My spinal muscular atrophy comes along with several medical issues. I have lousy circulation, to the point that I’m always cold enough to claim to be part lizard. My tracheostomy, etc. further prove that I have respiratory issues.
About 5-10 years ago, I heard about a tool that I was certain would help with both the circulation and the breathing issues. It comes with the added benefit of not needing someone to turn me regularly.
Funding medical equipment is sometimes a cluster of exercises in creativity and networking, but I will go into that some other time.
For now, I’m just going to say that the bed is here. My family and I get to sleep the whole night through. The Probed Medical Freedom Bed will keep me moving all night, making small position changes like everyone else. It will keep the blood moving and keep secretions from “puddling” in my lungs.
I still think it was a good idea. I need to learn how to speak my needs more clearly and openly, I’m not afraid to share others’ needs. This is just a downside to my being “a hardheaded woman from a long line of hardheaded women.” It is also a downside from my tendency to “John Wayne” my way through illness.
(I’m sure you know what I mean: he has been shot and is traveling across the desert with no water. Someone offers him a drink of water from their canteen and to bandage the gunshot wound. He says, “It’s just a flesh-wound. I’m fine.”)
Anyhow, Saturday I was sick enough to admit that I was sick. I stayed in bed and did NOT drink Romulan ale.
In spite of that, I couldn’t focus well enough to enjoy the movie. To top it off, only two people were able to participate. (That’s on me. I obviously did planned and advertise well.)
1 ounce vodka
1 1/2 ounces blue curaçao
1/2 ounce simple syrup
3/4 ounce fresh lemon juice
1 egg white
4 drops orange blossom water
1. Fill a pint glass with ice.
2. In a cocktail shaker, combine vodka, blue curaçao, simple syrup, lemon juice, and egg white. Shake vigorously for 10-15 seconds to emulsify.
3. Pour into glass and top off with tonic.
4. Add 4 drops of orange blossom water and enjoy!
There are so many folks who need additional help with funding medical needs! I found a group who helps with that. Take a look at HELP HOPE LIVE.
They are helping me get that bed funded, and there is a lot of creativity behind this. We are doing a Star Trek Movie Marathon watch party on Facebook. We are each getting a copy of my favorite trilogy of the classic movies, watching them in comfort of our own home, and discussing it online.
You know the little plugy-iny-thingy place that connects the power plug to the laptop? It wouldn’t actually connect and the battery was lasting like… 45ish minutes. I pulled every trick I could think of. I asked all my nearby computer gurus.
The Reader’s Digest version is that it was going to cost more to fix than it was worth.
Soooooo… I have another laptop. It took me a while to get it MOSTLY configured and working the way I like, but it is Lisa-usable.