Let's start back at the beginning, shall we?
Still experimenting with getting info from my brain to yours, like using this blog.
Please like, subscribe, follow, share, comment, etc. It will help us.
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Weslee needs more brain surgeries for his seizures. To help, please like, follow and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.
Weslee is back having clusters of seizures again. Mostly gelastic. One was at the top of the stairs; thankfully he heard me scream from the first floor to [ MOVE! ], and did so before the seizure controlled his body and made him lose his balance.
I am usually quick enough to grab his shirt or place my body to where I can stop/slow momentum. My messed up spine is witness to that.
I couldn't this time.
Our next home will NOT have stairs.
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| Made from D.T. nail polish and paints. |
I found the basics, like paint, molds, nail polish (too cheap to wear but perfect for painting). I tried working with cement and Plaster of Paris then to painting and resin. As a beginner. I didn't care about quality. I found so much of what I needed.
There are four locations of the Dollar Tree near me. They mostly have the same products, but a few are different. Plus, there is only 1 where the personnel care about appearances and cleanliness.Are they looking for a reasin to close stores? Giving up the biz? Did they stop caring?
The newest location to open is actually the worst. The one in the vid was the first I discovered in this area.
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Weslee needs more brain surgeries for his seizures. To help, please like, follow and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.
We had an ok day yesterday. No big seizures or clusters ... just an average day of simple partial seizures (seems like deja vu episodes to him) and chllin'.
Since we weren't really arguing and to kerp it that way, didn't mention that he REALLY needs a shower. It is like pulling teeth to get him in there..
For me, I ordered some of his meds, cooked, hung up laundry, went through bookmarks I made to figure out what I'm doing (will post to sell soon). Worked with sculpting resin pieces, and produced some resin galaxies / cosmos door-and-wall decor. As you can see in the pic, not my best work. Not even close to my vision. Will redo them over the next week or so .. now... where did I put my notes?
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Weslee needs more brain surgeries for his seizures. To help, please like, follow and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.
Can't believe how long it has been since I last posted.
Since my surgery for June 20 was cancelled, Weslee and I have been trying to just live quiet(er) days.
W has been binge watching an old TV cartoon, all seasons, and with that calming influence, his seizures have eased off a bit. And temper explosions have dimenished a tad bit too.
Could it be that my health crises are subconsciously influencing his seizures?
I have been healing (arm bruises from the many times the techs tried to find veins for the iron and platelet infusions from last week. They have finally started to fade). Changed my store launch to mid-July. Have a PCP doc appt this coming week where we will discuss ALL of my symptoms and medications to see if there is a central issue that links them all (where is 'Dr. House' when we need him??)
It has been a difficult week. Started with arguments and anger with clusters of seizures (and 2 doc appointments for me), and morphed into apologies and cuddly-time with still more seizures. So tired.
As the caregiver of an autistic epileptic young man, I almost always put his needs above my own. That is how I got my back problems (trying to catch a seizing 200 lb young man before he hits the ground during a seizure) and PTSD.
The stress and anxiety can become unbearable, so I started with all kinds of art in 2019 (after Weslee's stroke). Went from molding with cement and plaster of Paris, to UV and epoxy resins. Last year or two, I started making bookmarks, journals and keytags, and painting.
Here's what I did today:
I finished the marbling after I turned off the camera. Will use as a pic in one of my 'junk journal ephemera' books or as a keytag or...or maybe nothing.
Maybe more tomorrow. I really need to get back to writing. So many open projects.
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Please help with Weslee's medical expenses. Click here. Thank you.
I didn't realize the videos I posted last night on YouTube had cut off my kid's head! Here I kinda try to explain (hopefully the vid will show up ok ... or at all!)
Better pic of a stationery set, still in progress.
I was finally able to pick up Weslee's seizure rescue nasal spray today. Only one box, so 2 doses, which won't last long the way things are going.
Still, grateful CVS fulfilled the order.
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Sidenote: went to grocery on the way back home. Only had $35 so it didn't stretch far considering the price of almost everything was so much ... more. But the autistic part of him begs for Blue Machine juices as part of his weekend routine. (Complicated, which involves wearing specific clothing, using his correct pillow, etc.)
We just had a serious talk about tightening our belts because of increased prices. Even discussed getting quail again, mostly for eggs.
My book sales are very slowly picking up. Mostly my "The Bored Book". Hoping it continues to gain momentum.
And thankful I already have my art/craft supplies, so I did more painting yesterday. With input from a friend, decided to make ALL backgrounds for my bookmarks etc on the black shimmer paper, so need to redo that group tommorow.
After all of my errands today, my back is killing me. Heating pad...here I come!
V
Such a stressful Sunday. Many seizures of several different varieties, and used the last of his rescue nasal sprays. I put a call into CVS; I hope they get some to me quickly as his seizures have him afraid of the stairs again..
Once he got to sleep tonight (last night!?!), and stayed that way, I began to try to mitigate my stress. And it worked... for a little while. I painted these cute circles. I plan to cut out (inner black circle only), attach front painting to back painting, laminate, punch, attach to a coiled wristlet, and sell (hopefully), along with matching bookmarks, junk journals, and more, etc.
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What do you think? Eye-catching, or weird? Restful or ugh?
(If it doesn't load, here is the instagram link: https://www.instagram.com/p/DFU1vIxOD-G/?igsh=NTc4MTIwNjQ2YQ== )========
I hope the video comes out okay. If not, here are a couple of pictures of front sides of key tags. Enjoy!
So so far behind in blogging. I will catch up ... little by little. Promise!
WESLEE AND SEIZURES
It has been a week at least since I've had a decent night of sleep. Insomnia, listening for seizures, Weslee's nightly sleep-talking, and all that jazz. So I was still somewhat awake yesterday morning when I heard him have a seizure. He hasn't had one of his bigger ones in a while, so I had almost began to breathe again. But yesterday was rough. That new seizure that he's been having? The wiggle worm? It appears instead of laying down to wiggle, he now does it sitting up too. Promise that it was incredibly weird to watch.. over and over and over. Every couple of minutes. Wonder what the progression means.
It took an extra dose of one of his seizure meds PLUS his rescue nasal spray, to calm the seizures.
They started back up in the late afternoon so we did yet another rescue dose.
What is it about weekends and his increased seizure activity?
ME, THAT PURPLE MOM
It just occurred to me that I have worn purple nonstop, every single day, for the last 12 and 1/2 years. Whew! That's a lot of purple!
I hope that at least some of the conversations I've had that began because of my constant purple have succeeded in spreading awareness about epilepsy, SUDEP, and the sneakiness of seizures.
That IS the purpose of this website and my constant purple-wearing. To spread awareness.
WESLEE AND SURGERY PLANS
Weslee's inpatient stay at the Cleveland Clinic last year gave us a lot of information. These wiggle worm seizures, the little deja vu bits, and some other things we weren't sure were actually seizures ... ARE in fact seizures. They definitely showed up on the EEG he was hooked up to.
His medical team at the Cleveland Clinic reviewed all the data, from MRIs, EEGs, CAT scans and so forth, prompting a call from his Cleveland Clinic case manager, a doctor who had been there for quite a number of years. He suggested that there were a few options to go forward. Unfortunately, all but one required surgery. The one that did not include surgery, was basically the option where we do nothing. Just keep on keeping on.
I asked a lot of questions, came up with more questions for the case manager, got some decent answers, and hung up. It has been a few months since that talk, but the stress ways heavily on my shoulders. Do I send him back for surgery, or do we do nothing. And that first surgery that he would need to have, is the SEEG, which would be a repeat of the exact same surgery from May 1st 2019, that gave Weslee a stroke and put him moments away from death.
The stress of making this choice, as to what path we take, has overwhelmed me. I only recently made the decision that we go ahead with the surgery. The SEEG will give us more detailed information, if done correctly, as to where exactly his seizures begin, work through, and end.
Or they could do what **I** call a blind surgery, where they take the limited info from the Aug/Sept EEG in-patient and operate where their best guess indicates.
No matter which surgery, it will be a minimum of three physical visits there. My van won't make it again.
As soon I fix or replace my vehicle, I will contact the case worker to set up the next step(s).
ME...
The stress of figuring out the best choice for Weslee's health, coupled with my severe health issues, lack of funds, and so many more other aspects of life, I am not doing great. You probably don't want details. So I have been painting and marbling and experimenting with art, plus writing, when I am up in the middle of the night, as a way to relieve stress. I have high hopes. Well, not really.
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| Dot painting / Mandala. Need to fix a few places. Will have a black background instead of purple. Possible bookmark? Is there a market for this? |
Until next time...
Vikki, ThatPurpleMom.com
So much is going on with my son's seizures that I had almost forgotten that I enjoy creating journals!
A few months ago, I started exploring the realm of junk journals, ephemera, and using these as a creative outlet. Is it any surprise that I worked up four Junk Journals to be available for sale on Amazon?!? Yes, I have plans to do more. PLUS I am making by hand several sizes of junk journals, and kits to help decorate them.
I am also working on a book of ephemera backgrounds that I have enjoyed painting. The first, focusing on the color BLUE, should be available by August 2024.
Sample 'background' below.
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Here are the four junk journals i have created thus far:
PINK: Junk Journal .. https://a.co/d/hmpoFXE
BLUE: Junk Journal .. https://a.co/d/dXmKYSu
VINTAGE: Junk Journal .. https://a.co/d/j4ortlt
WEDDING: Junk Journal .. https://a.co/d/hCSkJgM
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This is my junk journal unboxing video.
https://youtu.be/1JeT4m0SfyM?si=lW0ZpCDwYOjR-wWk
#JunkJournals
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Please see my AUTHOR PAGE on Amazon to purchase a few books. Topics range from non-fiction about epilepsy and what to do if you are bored ... to journals and planners ... to short fictions about mermaids, grim reapers, vampires, wiccan suspense and more. Thank you!
https://www.amazon.com/author/vikkilawrence
I am listing these not just for the satisfaction of seeing a project completed, but to keep raising money for my son's medical consultation for his uncontrolled seizures in August. ( #ClevelandClinic )
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Thank you for your help. Please like, comment and subscribe.
As much as I love working with cement, Plaster of Paris, resin, and dot-painting, I have gotten into painting backgrounds for junk journals. Thinking about publishing them in a book of ephemera for junk journalists.
It started as an experiment for my fingernails, but.... wow!
A Junk Journal is not exactly what the name implies. It has nothing to do with junk. It has everything to do with being able to express yourself, whether it's writing, decorating the pages, experimenting with different types of art, or just assembling things to make it look good and make you feel good.
So these are among my firsts, and includes shakers. Ignore the binder clips... I want them to dry closed.
So much fun, and a way to pass the time in the middle of the night when I stay awake to make sure I can hear seizures from my son!
Long long time in between posts.
But...
How often do we start a project with wonderful intentions, and end up being consumed with living a life? It should be no surprise, looking at the time lapse between posts, that life caught me in its snare.
I promise I will do a better job in keeping this blog up to date, adding my experiments with various art mediums, linking to my Etsy shop (or switch to Ebay), and in general being more proactive.
Of course, being with Weslee in the hospital since yesterday doesn't really help.
Starting...soon?!?!
