It Is Good to Sleep!

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.

More later…

Funding Came through: “Magic Bed” Is Here

I Intended To Take A Few Pictures, But My Phone Battery Was Dead

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.

Details to come after I use the bed tonight. 🙂

My “Virtual Star Trek Movie Marathon Fundraiser” Didn’t Work

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.)

Onward and upward. I learned from this.

A recipe: Romulan Ale

We can’t have a party without something fun to drink. How about ROMULAN ALE? Not only does it match my uniform, it is forbidden in 15 planetary systems.

Here is the link to the non-alcoholic version.
Virgin Romulan Ale

Here is the one that sounded like fun to me:
Romulan Ale Cocktail

INGREDIENTS
1 ounce vodka
1 1/2 ounces blue curaçao
1/2 ounce simple syrup
3/4 ounce fresh lemon juice
1 egg white
tonic water
4 drops orange blossom water

INSTRUCTIONS
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!

 

Next Week, at about This Time, My Fundraiser Should Be Finishing

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.

A link to the Star Trek marathon fundraiser https://helphopelive.org/campaign/17488/
Come to my Star Trek themed fundraiser.

Recovering from My Computer Crash

Well! That was fun (NOT)!

Man screaming screaming at broken laptop
Photo Credit: “day 115 – 22.12.2008 – live dammit live” by ardenswayoflife on VisualHunt / CC BY-SA

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.

It’s Spinal Muscular Atrophy Month

 It's just me, my face, and I celebrating Spinal Muscular Atrophy Month

It’s just me, my face, and I celebrating Spinal Muscular Atrophy Month

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.

In case you don’t know much about it, here is a decent article from a reputable website:
What is SMA from Cure SMA

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
https://www.pro-bed.com/

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:

Zion Fundraiser Annual Ribs Cookoff and Pie Contest Hosted by Zion Lutheran Church, Tomball, TX
1st Annual Ribs Cookoff and Pie Contest Hosted by Zion Lutheran Church, Tomball, TX

Lisa Reads: Employment Options: The Ultimate Resource for Jobseekers with Disabilities

Lisa Reads: Employment Options: The Ultimate Resource for Jobseekers with Disabilities and Other ChallengesBook cover for EMPLOYMENT OPTIONS
by Paula Ruben Viellet

(My Employment Options) 

I am distinctly ambivalent about this book, but I will give it tentative positive review. After all, it is full of useful information. It is not just designed for people with disabilities, it is for ANYONE with issues in moving forward with for new employment.

You don’t have to read this book “cover to cover.” It is designed for you to choose that areas that you need the most help in. “Employment Options” is particularly good and detailed in the self-assessment areas.

Another bonus is that this book is written by one of the experts who runs the website MY EMPLOYMENT OPTIONS, which is a national Social Security Administration (SSA) Employment Network in the Ticket To Work program. Not getting crossways with the federal government is important, these folks can help you avoid that cluster of issues.

I have two problems with the book.

1. It doesn’t particularly help with avoiding problems with state and local intricacies. Attendant Care, and the payment thereof, is a state issue. Figuring a way to keep your PCAs paid for until you can afford to dump all state funding is a daunting task. Even if some states are better than Texas when it comes to this issue, EVERY state has problems.

A number of people simply give up and decide to live in social media and watching TV.

2. I am already fairly confident in my job hunting skills. Yes, I will continue learning, but I don’t need someone holding my hand and pretending I need them to be my cheerleader. JUST GIVE ME THE FACTS AND THE STEPS and let me do what I need to do!

When it comes to my first problem, I found NMD United to be a much better resource for me. It is for people with neuromuscular disorders, and covers circumstances like my own. So far, the people I met there are interesting, active, and proactive. If you are in Texas, there is also a Facebook group dedicated to our Texas members. If you want more information, contact me and I will tell you about them.

When it comes to actual jobhunting skills, I think that an online course I’m taking is a MUCH better source of information. HOW TO FIND A WORK FROM HOME JOB OR SIDE GIG IN 30 DAYS OR LESS is interesting and fun. After a brief introduction and “setting the ground rules,” it BEGINS by talking about scams, and how to avoid them. I thought that the chapters on effective search strategies were particularly useful.

I’m almost 1/2 of the way through. Next comes the resume and interview practice, then the cover letter. At the very end, there’s even a chapter about convincing the current boss to let you work from home.

If you are interested in that class, here is the info. I found the video toward the top of the page to represent the style of the class very well.

First Loading Dose Is in the Rearview Mirror

image of a CAT scan machine
This Helped Things Go Smoothly-a CAT Scan (image thanks to daveynin from United States [CC BY 2.0 (https://creativecommons.org/licenses/by/2.0)])
Yes… Earlier this week I had my first step in my adventures with Spinraza.

Other than getting lost and accidentally taking a tour of Methodist Hospital and the associated parking towers, it really wasn’t a bad experience.

Of course, there was some of the “hurry up and wait” that always happens with medical procedures. Of course, I was nervous… THEY WERE STICKING A NEEDLE IN MY SPINE, TAKING SPINAL FLUID OUT AND REPLACING IT WITH OTHER STUFF!

Just the idea makes the hair want to fall out!

I got changed into that fashionable hospital gown, gave necessary samples to make sure I’m okay, and equipment installed in case they needed to give me an IV med, and headed to the procedure room.

I was laying on my side and was strapped down. (Perhaps they expected me to leap around the room once they finished?)

They quickly located the spot and inserted the needle. It wasn’t COMFORTABLE, but it didn’t hurt… Except for when one of my nerve endings got touched. THAT caught my attention, but it was only for a split second.

The whole thing probably took 15 minutes. No headache, no pain… Tiny bruise that is very hard to find.

Since then, I have been dreaming all surfaces under my skin were vibrating as things slowly reawakens. Good dream!

I’m not really sure when to expect any possible changes, or exactly what to expect.

Next dose is in about two weeks…


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