One of the benefits of maintaining your own website is the fact that you can pretty much try what you want when you want. Granted, it takes away from “writing time.” Still, it can be very satisfying. I find that I can sometimes set the back of my head to work at untying a knot in my fiction while using the front of my head to work on my website.
Yes, it is just plain fun for me.
The downside is sometimes upgrades are more problems than they are worth. I’m dreading having to go to the next version of PHP. Apparently, it causes all sorts of problems for WordPress users.
If you’re interested, you can read all about my fears here. Otherwise, please enjoy a wonderful day!
I know it’s not really important, snacks are probably a waste of time and calories and all sorts of other stuff. I should focus on meaningful eating.
Guess what! Sometimes small treats are important, too.
I used to thoroughly enjoy popcorn. It’s a simple treat, light and Buttery. It makes me smile, or at least it used to. It doesn’t anymore.
You know those hulls, Nibs, and other nasties that come with popcorn? They bother everyone. For me, they are also a choking hazard. It has been decades since it was worth risking catching something behind my epiglottis and having it turn into something dangerous. Nope, no popcorn for me, thank you!
Until recently! Another friend with a neuromuscular disorder recommended Chester’s Puffcorn. <https://www.fritolay.com/snacks/product-page/chesters-snacks/chesters-puffcorn-butter-flavored-corn-snacks>
OH MY! (In my best George Takei voice…)
They look like popcorn. They taste like buttery popcorn. They are so light that, if I look at them too hard they dissolve.
I would have to work hard to choke on these!
One of my nephews isn’t incredibly impressed. He calls them “Cheetos without cheese.”
I Can live with that description. At least I can enjoy “popcorn” occasionally.
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:
I find it difficult to write, anymore. I didn’t always. I used to be able to spin a yarn, almost without trying. Since I’m stuck, I’m trying something new. I’m taking an online course called “Write The Seven Step Story.”
Yeah, I know. I keep taking classes. I can think of worse addictions.
For now, I have done a rather weird bit for the first assignment. Enjoy it, or not. Let your own taste dictate.
When you live off the Gulf Coast of The Big State, you know that there are only 3 times in the year. The first is the one that starts in mid-October and goes until mid April. In the course of this clime, the air can take on any traits: hot, cool, dry, wet. It can even freeze during the month of the New Year. The next time is the rest of the year. During that time it is hot. It may be hot and dry or hot and wet, but the heat drains your energy. This time is punctuated by August. During this, heat is increased.
So, if you live off the Gulf Coast of The Big State, you go in. That’s where cool, dry air stirs ‘neath fans. That’s where cold drinks quench thirst. That’s where friends and kin tell yarns and truths. That’s where love and hate twine hand-in-hand. It is where life dwells.
Oh my goodness! I did not expect to receive this package so quickly! I ordered one bar of the SWEETGRASS SUCCESS INTENTION soap and the LILAC, VIOLET & BLUE VERVAIN Wylde Faerie SOAP.
I am very comfortable recommending Ancient Alchemy Soaps. The fragrances are even lovelier than I hoped! When I opened the packages, little bits of potpourri -like dried flowers came out. I’m sure they were the ingredients that made these handmade bath bars extra special. To the touch, they feel good. I haven’t used them yet, I wanted to share my delight with this online store. I might be able to give you more details tomorrow…
I pondered that for quite a while. There are quite a few things that I enjoy and appreciate. “Falling into” a great story, whether I am reading, writing, or watching it brings me great delight. Spending time with people I cherish is like oxygen to me. Learning and/or teaching is an intense pleasure. Circumstances, people, things are just stuff. And yet, none of those things can MAKE me happy. They may reveal a happiness or contentment (or lack thereof), but they can never place happiness within me.
Only God Himself can make me happy. As He rebuilds me from the inside out, preparing me for eternity, He places a peace beyond all understanding within me. He builds contentment and joy into my person.
The tools He uses are surprisingly simple. It starts and ends with His Word. Whether I like it or not, I need to let the Holy Spirit work through Scripture. Both Law and Gospel have to have their constant place in my life: God’s Holy Law has to tear down my pride and self-sufficient attitude and God’s Holy Gospel is to build Christ Himself within me.
That can’t happen quickly or easily. There’s a reason we are to gather together around preaching and the sacraments regularly. Having the pastor place forgiveness in our ears and on our tongues is a start. Unfortunately, we also have the attention spans of squirrels on crack. We can’t go 3 minutes within the service without getting distracted. That’s why daily, family and individual Bible study and devotions are important. We need to have the weekly church service lessons reinforced at any given moment.
We never know when life will place a “pop quiz” in front of us. God’s Word makes us joyfully free to live forgiven lives while forgiving others around us.
My Spinraza Loading Dose III is in the rearview mirror. Yes, it went well, again. While I don’t think I will ever consider a lumbar puncture to be ROUTINE, it was pretty much a routine procedure.
So far, I haven’t had any ill effects. Although today, my lower back feels “tired,” and my right leg feels like it woke up from being numb.
It isn’t pain, and I can live with that!
The progression of Spinal Muscular Atrophy is stopped, or at least slowed. (That seems to be what the literature shows, anyhow.) On Thursday morning, I was able to open and close my left hand. I haven’t been able to do that in… I don’t know how long. While I haven’t mastered that superpower in my right hand, my index finger can grip a little bit.
Saturday evening and today, I’m not quite as strong with either of those. But they are still better than they used to be.
Where do I go from here? My final loading dose is towards the end of the month. I will continue to rejoice in the life I have and any small gains that this medicine has brought me.
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.
I have had a hideous cold since January 3. I probably should have gone to the doctor, but I am as stubborn as all get out. I’ve been taking it easy and drinking water. It still sounds like I have inhaled an aquarium!
Yesterday, though, I had a doctor’s appointment to change my tracheostomy tube. After he did that, Dr. C listened to my lungs and prescribed a broad spectrum antibiotic. I took the first dose (one dose daily for five days) and today was the first day I woke up without needing suctioning.
Maybe I have turned a corner!
This really has put a cramp on all my writing goals. My energy level and attention span have been quite low.
Again, today, that has improved. I have logged about 500 words today. That doesn’t help with the 14 days that I didn’t do much, though. Still, I still have time to catch up with my goal of writing 100,000 words this year. That’s almost 8500 per month. It is almost doable.
I also got some more interesting news! In August, it turned out that I couldn’t take Spinraza because they couldn’t get through my spinal fusion. Here is the latest info: