write a story
write your story
feel the experience
embrace the pain
make it your ally
write a story
write your story
feel the experience
embrace the pain
make it your ally
take to the skies
shake off the chains
make your life the one you want
the life you need
be well and dare to be happy
There is no user manual for life. No guidelines or rules about how you are supposed to feel when the life you thought you would have is over. When illness takes your dreams, and you end up sitting and crying and working through all of what might have been. We understand how to grieve for a lost loved one. But, when you find out you have a chronic illness – that will most likely in your lifetime not have a cure – your life sort of pauses on itself.
Some of your dreams will fade, wither and die. When you have had a life of pain and discomfort, you can’t sleep, you hurt everywhere – it is hard to describe the joy you have when you finally get a diagnosis. You know there is something to it all. Then it sets in – while you are happy that you know what it all is, the joy fades, and you find despair and grieving for the things that haven’t come. The things that you think you will have time for, the things that you want to do, places on the bucket list. They are gone.
It takes some time, but there is a bit of hope. You do not have to give up on all of the dreams and adventures. MODIFY, modifications to our lives is a great way to make the best of a shitty situation. There are so many tools and ideas to help us navigate our illness.
First, you have to learn – and this one is HARD — you have to learn SELF-CARE and SELF-LOVE.
I could dazzle you with positive hyperbole and tell you things like if you would be happy if you only believed.
Fuck that – grieve, rage against the world — get it out of your system. Then move on. You have shit to do.
There will be days when you can’t face it, and getting out of bed will take every ounce of energy you have. But, there will also be days when the sunshine breaks through the clouds, and you find joy in what is in front of you. It could be anything that makes you smile. The point is MODIFY. Maybe you won’t hike through the wilderness and spot a glimpse of nature at its most wild. Hell, even finding the strength to walk around the store for groceries can seem impossible. That is why we modify to fit our needs whenever possible.
Acknowledging that we can be suckers, we need relief from the pain, sometimes at any cost. We want to hang onto the hope that someday someone will find the one thing that takes it away. The magic pill. We gobble up self-help books on how to cope with pain and how to survive with our illness. Searching for the answer to why we are suffering. Everything happens for a reason; we wouldn’t have been given more than we can handle and so on.
There is no one size fits all when it comes to modifying for our illness – these are just some of the things I have tried that have worked for me. One day I may post about what didn’t work for me – but probably not. I don’t want to discourage others to find what works for them.
We live in a very tech-obsessed world right now. We know that tech can provide amusement, information, and connections to others. What you may not know is that technology currently offers so many options for people who want and need assistance with everyday issues.
Some of these currently available devices can help you with reminders, timers, entertainment, accessibility to devices throughout your home. With the “Internet of Things” growing exponentially you are almost guaranteed to find something that works for you. You have hubs and assistants. These things are amazing. You can operate a lot of smart home devices with your voice or a few taps on your smart devices. Phones, tv remotes, watches, ovens, faucets, and the list goes on. While you may not need or even want to engage with your stove or refrigerator the point is that you CAN. Simple tasks like setting a timer or reminder, check the weather, listen to music or audiobooks and so on. My Amazon Echo is even set up with several IOT devices that I have in my house. I can ask the Echo to turn on lights, open window shades, also get a single cup of water from the new Delta Faucet.
Amazon Prime Now – When you discover you are out of cat litter, or you have run out of toilet paper, Amazon Prime Now can deliver it straight to your door in as little as an hour.
When you don’t feel up to going out, but you are craving that dish from your favorite restaurant, their food delivery is a great option. And you are not limited to your usual delivery foods like pizza and such. This type of service brings “take away” to you. Some of these services go beyond restaurants and of course YMMV based on your location. Worth checking out tho. Besides PRIME NOW some of the other services I use are Instacart — Doordash — Postmates — GrubHub Many local grocery stores have started to offer delivery and even curbside pick-up. You place your order online or through an app, the staff at the stores do the shopping for you. Compile your cart and deliver it to your door or you can pick it up curbside. They will even load it into your car for you.
Getting your medications have become simple as well. Some local pharmacies have delivery services. Check your pharmacy for an autofill option to go along with delivery. Running out of medications should not be a worry we have. There are also mail order pharmacies.
Audible – It can be pricey, but if your local library doesn’t have the option to get audiobooks online, this can be an excellent modification for readers. I gave up reading “books” a few years back. Just holding up a 300-page book was exhausting. I got an e-reader, and that was doing well for me – unless the brain fog was terrible. I found myself reading the same paragraph over and over and not retaining it. Enter audiobooks.
Just be sure to check if your local library has an available digital catalog first. One place to check is OverDrive.
Disclaimer – I may receive commissions when you click some links and make purchases. It bears no additional costs to you, and this will not impact my suggestions. I would never link to a service or item that I didn’t use myself.
We seem to think that we have all of the time in the world, but, we all die in the end.
My entire life I have filled and then discarded many journals and many more attempts to write with reckless abandon – but I lost too much to the should and shouldn’t.
Fear — Uncertainty — Doubt — Guilt — Existential Crisis = FUDGE
But spending time out in the desert under the darkest skies imaginable – I have come to realize that I AM INSIGNIFICANT. What I do, what I say — no one cares. Since I am but one speck on a planet of nearly 10 billion people and part of what is most likely a multi-universe it makes it less likely that I am going to make any real change to anything of value for the millenniums to come. So here I am — writing for me.
I met Michael on the Internet. That should tell you where I spent a lot of my free time. I was working on websites, and all of the code was beginning to blur. I had installed the most recent version of ICQ earlier that day, so I decided to take a break from the HTML and check out some of the new features. Trying out Random Chat I came across ET3KIDD. It sparked my interest because it was the first “normal” looking name I had seen. Most people had SexyKitty or HotMale for their usernames. Not original and usually indicating boring conversation and little imagination. ET3KIDD I could not figure out. You see I am an Army Brat, and I didn’t know it was a Navy thing. So I paged him: “Hi What is an ET3KIDD?”. After he explained that it was his rate/ rank in the US Navy, we began chatting.
We spent a lot of evenings chatting and emailing each other, and we finally met in “real life.” He stopped in on his way home for a family get-together. He was supposed to drop in for a moment and be on his way. We stayed up all night long talking about our lives, our dreams, hopes. He dropped by to take me to breakfast on his way back to South Carolina, and every weekend after that *grins*.
A little while later I went to visit him in Charleston, SC and after a week I was getting ready to come back home, and he asked me to stay. He first told me that he was falling in love with me one night with a full moon after a night of walking along the water at the Battery in Charleston, South Carolina. We were listening to the dolphins play in the harbor that night.
He asked me to marry him on September 13th, 1998. It was early in the morning; he had just gotten home from an overnight shift at Prototype. After the hugging and shock wore off, I said YES.
We married on my parents’ place in southwestern Virginia on a breezy October day surrounded by friends and loved ones. The wedding was wonderful. Quiet, comfortable, no church, no rules, just lots of fun! We wore jeans and comfy shirts. I thought that the wolves would have surrounded my dream wedding in the woods (which almost happened by the way), it turns out that any place would have done, as long as Michael was there.
Happy 20th Anniversary.
Does anyone else feel like Elon Musk should have been the lead in “Why Him?” or at the very least Franco’s older brother. “They hate us cause they ain’t us.” Now, I am not typically a Kool-Aid drinker – but if you’ve ever ridden in a Tesla or lucky you — DRIVEN a Tesla — you would know why the haters are running scared. Take a full-EV like a Fiat 500e and multiply that by 1000 and you have it. Take off like a rocket sled – get off the line quicker than any ICE on the market, seat up to seven grown ass people. Can we stop hating on Tesla because of the cost, instead of bashing Tesla for being expensive how about you take your complaint to Detroit? Let me help “Dear Shitty Car Makers; Tesla is dope as fuck; please get with the program so I can trade in my ICE for good. Is Elon bonkers? Yes, but as you know – all the best people are.
I envy computers. You can delete a file completely. There is nothing left of the file so when you try to retrieve it – nothing – it does not exist. You won’t accidentally stumble upon the file, and thus ruining your day.
I wish I could cut memories out of my brain like a computer file. Just gone, nothing, zip, zilch, nada.
The United States celebrates their independence from British rule like they just won that fight yesterday. It is a bit like some washed up high school quarterback thinking he is still the shit because of that winning touchdown 30 years ago.
all of this time the story of the Devil and Hell got twisted around. What if Lucifer were not the evil one but the WARDEN of prison in which evil is contained? A favourite angel of the big G, so honest and good that he was chosen to protect the flock from all the nasty women, liberals and immigrants. Wouldn’t the good christians want to buy him a cup of coffee and a doughnut? Instead, they blame Mr Morningstar for our evil liberal ways.
March is Caffeine Awareness Month. While the month is supposed to be dissecting the travesty that is CAFFEINE.
I get that you don’t want toddlers jacked up on energy drank! However, according to 23andme.com, I am likely to consume more caffeine than the majority of the population. I didn’t need genetic testing to know that, but hey: science is cool.
When I was a girl, my Aunt Mary taught me how to drink proper Irish tea – a potent brew with milk and sugar, these days I use erythritol or monk fruit to sweeten and heavy cream – because yanno FAT IS GOOD.
My goto morning cuppa is Republic of Tea’s HiCAF Breakfast blend. I don’t get jitters, and it is a lovely tasting tea with a whopping 110mg of caffeine.
I am sure some people consume too much for their system and needs. When I was diagnosed with Fibromyalgia in 2005 after suffering most of life, I tried everything. I cut caffeine out – stepped down to as close to zero as I could get. It did not help. In fact, it made things worse. The lesson is – do what works for you.
Anyhow – enjoy the month and have a cuppa or four. =)