Sometimes life just crashes in on you, doesn’t it?
I have been trying to take care of my pressure sore. (It is healing well, thanks for wondering. Maybe 2 more weeks?) Since it is the first one I ever had, I and my family and caregivers were feeling foolish for letting it happen in the first place. I suppose guilt is in there, too. It often rears its head, especially when it is truly irrelevant.
I think that the worst part is that it stole computer time from me! That has been filled by Amazon Prime Movies. While I have seen some truly unexpected gems, some were NOT. 😉
I also started something new. Here are some quotes from my private diary.
I cannot tell you how quickly things moved to get things started with Evrysdi. It was nothing like my experience with that other medicine. This time, the doctor prescribed it. It got forwarded to Medicaid/Medicare. They approved it. I got a call from the pharmacy that works with this medicine. I have been trained in how to take it. They plopped it in the mail. It arrived, and I took it.
I will have to drink more water afterwords and maybe eat something soothing. It feels/tastes uncomfortable on my tongue. That is something of a caustic medicine, I guess. The instructions say not to get any of it on your skin. It helps distribute SMN the body, slowing the deterioration due to SMA. People getting it early enough seemed to have really good results. This webpage shows what Evrysdi can do – and has done in testing with real human beings.
I have been using this bed for a week. It is WONDERFUL to not have to have someone wake up to turn me twice a night, both for my sake and theirs. While it could be “placebo effect,” my feet feel slightly warmer in the morning. My respiratory system hasn’t shown much of a difference, but I’m not surprised – we will see what happens when I’m sick. I have had one small bout with sciatic pain, but it ended quickly.
Putting the night routine together is easier. Instead of being balanced and surrounded by pillows, I only put one small one to protect my tailbone. We move the gastric tube into a position that will not bother anything – especially my face. I get prepared for bed as usual otherwise. Once I sit up a little bit, so I can manage secretions, we can switch like controls.
Slowly and quietly, the bed rotates 30° to the left. 30 minutes later, it rotates 30° to the right. This keeps happening until we turn it off in the morning.
The first night, I startled when some of the turns began. I wasn’t scared or anything. It was just DIFFERENT than what I was used to. I was only awake for a few seconds each time.
Now, I sometimes wake up once or twice a night. It isn’t always connected to turning. (The ice dropping in the refrigerator is noisy, but I don’t think it’s that, either.) Anyhow, I usually fall asleep right away.
If I’m wide awake, I listen to Lutheran Talk Radio or an audiobook for a little while. I’ve been waking up early, sometimes 6 or 6:30 AM. Once again, I listen to something until someone is ready to work with me-usually around 7:30 AM or a little bit before.
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 tried to email these to Maxmino at NuMotion, but no matter what I did, they didn’t work. I’m trying this method now. Feel free to ignore this post. If you click the thumbnail, you will see the large picture.
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.
I’m behind, and August has barely started! It is SPINAL MUSCULAR ATROPHY month. Yes, it is still weird to me to celebrate a disease, but celebrating people who have rich and full lives with SMA is kind of cool.
You can also ask any question about living with a neuromuscular disorder. Feel free to put it in my comments. I will either answer privately or publicly.
Many tools are available to make life with SMA easier now than it was when I was younger. For example, breathing treatments have kept me from several rough situations that I faced. My tracheostomy tube is one of my best friends, pulling mucus out of my lungs when I sound like I have inhaled an aquarium.
It’s better than listening to my doctors predicting my death since I was 2 years old!
Some of the things are a little bit pricey. One of the lateral turning rotation beds would be a wonderful tool for my respiratory system and preventing blood clots. Unfortunately, it costs as much as a car. Still, you have got to look at this:
ProBed FREEDOM BED
Since it costs so much, I decided to treat it like a car and get a used vehicle. Then my church stepped in and is going to help with this: