You’ll never know…

…until you have actually and fully been there.

Until you have actually walked this road in a way that leaves the soles of your shoes worn out and developing holes, and your feet blistered and bleeding twice as much as your heart pumps through you and until you have not only seen but had no choice but to actively participate in the sights and scenes DAILY, because there literally was no one else, for so long that you feel like you’re in a Stephen King novel, no – you will never know what it’s really like.

How it can wear you so thin that it nearly destroys you, the way water seems to work like acid and melts cheap toilet paper.

How it can tear you down to a level that you, as compassionate and kind a person you are or try to be, think, “the next time someone tells me I should smile more, or I should look on the bright side (which is what? That eventually she’ll die and I won’t have to do this anymore?) I’m going to punch them in the face.”

How you start avoiding people because you’re sick of their hypocritical judgments and comparisons, OR the way they pretend to understand when you know good and well they have no clue so you just stop talking about it and pretend it’s easy and everything is fine…

100%. Until you’ve done it, you’ll never understand completely what it’s like. I shared a lot of our journey. Even then it was only a fraction and what I did share was picked apart by completely irrelevant, inexperienced people. But I will keep sharing this until we have real reform and raise the standard of care for caregivers and their loved ones with dementia. (Thank you, Martina.)

When my mom died, it broke me. It wasn’t the grief that broke me, it was the RELIEF that broke me. Because I had no idea what to do with it. And I felt guilty for feeling it in the first place.

Finally being able to breathe and stop and rest after SO LONG of being a full time care giver going between two homes and three people (wait, four – but I never really thought of myself, lol) and dealing with doctors and being sick myself…?

THAT almost killed me.

I’m not exaggerating or trying to be dramatic or draw attention, which is what people always love to say when you share thoughts like this (which reallllly doesn’t help so just shut up because that kind of thing can drive someone over an edge you will never understand when they’re grieving loss after caregiving).

I just finished writing a whole chapter about this. Maybe I’ll share it via my blog… For now, here’s the thing I want you to know and remember:

If you’re in a situation like this or are grieving after a situation like this, know that you’re not alone. Know that there ARE those who see you and feel you because they’re there, too, or they’ve been there before.

I pray not one of you ever has to go through it (or go through it again).

If you are forced to go through it, I pray you get the resources you need (financially and otherwise) sooner than a month before your loved one dies because the only thing that finally saves the day is hospice.

I pray if you do face this situation, you have less people than more coming at you with what you need to do and how you need to act but NEVER actually doing anything to help you do what they think you should do and regularly acting the same way you’re acting despite not being in your shoes and instead having everything they could ever want or need.

And I pray that if you ever find yourself in those shoes, you give yourself grace and you forgive yourself daily, before the day begins, for the fact that you’re never going to be perfect. You’re not going to get it right and keep your cool and manage your emotions well EVERY DAY. You’re just not. Period. So accept it and be gentle with yourself and just keep doing the best that you can. You’ve got this. You really do. You don’t think you do or feel that you do, BUT YOU DO. 🙏💜🙏

And if you’ve never been there at this level and never have to be? I pray you don’t take that privilege for granted. Because you ARE privileged.

💜💙💜

So here’s the thing…

Yesterday I texted a couple of people to tell them directly about my lupus diagnosis and I said, “I win! Yay!” One of them texted me back saying nothing but, “it’s not a game or a competition.” I said, “well I didn’t mean it that way – I sarcastically meant I win at life… Kinda like when I say ‘fuck doctors’ ftw (for the win).”

So here’s the thing…

I say off the cuff, smartass things like that because I feel exactly the opposite – that’s what sarcasm is to me. It’s me being “darkly positive.” It’s me feeling like I’m speaking power into my body and soul to deal with myself. They told me that was unhealthy. I thought, “so is being depressed and/or suicidal but because that can’t be seen it’s not real to you…” Which mindset is healthier? People are funny. Especially when they beat you down for things that are EXACTLY like their own mindset or behavior but it’s fine for them, just not for you. 😂

Anyway, the only other thing they said was that I needed to go raw because that was the only way to eliminate chemicals from my diet and I thought, “yeah, that doesn’t work for me, either.” Do you know how much it costs to eat a raw, actually chemical free diet? We do. We did it for about six months when they told me I had celiac disease. It cost us around $200 a week to buy just groceries and eat/cook from home, and I was the only one eating the “healthy” food while the boys continued to mostly eat their normal, less expensive food.

The point of me mentioning this is to remind you all that the government controls every aspect of our lives for profit. Break it down and you’ll see the proof. They know that they can’t make money off of our health conditions if they make easy solutions to them readily available because then we won’t need medicine. Case in point? Dandelions that grow in your yard and the pesticides to kill them versus the story they feed us about how much more beautiful our yards are to be “weed free.” And we fall for it. Because clearly one of the most beneficial plants for our bodies shouldn’t be allowed to grow in our own yards for free. The FDA doesn’t WANT you to be healthy. It wants you to depend on big pharma and the medical business in America (and around the world) so that people that aren’t meager pheasants can put money in their pockets and keep us pheasants dependent on things we can’t provide for ourselves. Why do you think there are so many laws and restrictions on things that would make living a fully self-sustainable life easy to achieve?

That’s not a conspiracy theory. It’s just common sense. 🤦‍♀️🤷‍♀️ Otherwise, why would diabetes medication and chemo and even some of the meds they want to put me on cost so much that you have to work a second job (like my dad did for years) just to stay alive? That’s why so many people are flocking to alternative lifestyles…

The point is this: I talked about this because I wanted support from my friends to help me deal with the changes ahead, not to be told how to handle it. I’ve got it handled. It’s my body and my life and I’m the only one responsible for making it good. But it’s nice to know that people are there to listen and be a part of your community. That’s why people say, “if you need anything, let me know.” Right? That’s what friends are for. I try to offer support to my friends, no matter what I’m dealing with personally…and lord knows I’ve been dealing with health stuff for a long time. But if you’re someone who I love and care about, I’m ALWAYS there – until you tell me not to be. I’m grateful for the handful of people in my life who are understanding and receptive as well as giving of that…

There is No Logic in This | Dementia

Yesterday was the worst day. I don’t know why, but life always seems to implode (or explode) with everything at once. Yesterday I battled with my own body and began to battle again with my mind and my thoughts. I laid down in the afternoon to nap and I missed a phone call from my mom.

About two hours later I was awakened by a phone call from the hospital. We rushed up there and were told that she had been wandering again (not so much wandering as making more poor decisions, having it in her head that it was a good idea to walk 3 miles to a store, which she has attempted to do several times since the beginning of this year). She has so far not fallen on these little escapades but this time she made it about two or so miles before she did fall.

I believe that she passed out because she refuses to eat properly and she’s also very weak and feeble to begin with, so I am not surprised. I have begged her not to do this, making that very argument and explaining how dangerous it really is. In fact, the last time, a neighbor picked her up around the same place she fell yesterday and she was walking IN THE MIDDLE OF A TWO LANE ROAD with curves and fast traffic.

I also believe that she hit the pavement so hard that she had to have knocked herself out because she hit the pavement hard enough to bust her chin all the way across and knock all of her teeth out of line as well as broke two teeth. She has a major swollen bruise on her temple and severely bruised ribs as well as scrapes and contusions on her hands, arms and legs. Today she looks like she lost a fight with Mike Tyson.

I’m not sure how long she laid there before she called me because, again, I don’t feel like anybody could take a blow like that without being knocked out for at least a short period of time, but eventually she tried to call me and I was asleep. #guilt Three people passed by to offer help – she refused help so the first two just drove on without even calling an ambulance, while the third person refused to move her and called an ambulance but then left before the ambulance arrived.

There was at least a 40 minute time frame between the time that she fell and the time that an ambulance arrived which means that she laid on the side of the road (possibly in the road for a period of time) for that long miraculously not getting hit, robbed or otherwise hurt.

This is the final straw for me and I can no longer accept the fight that I have been fighting for so long to prevent her from living alone. I will no longer allow – regardless of the fight to come with her – her to live alone. I will be raising hell with the doctor and I will sue on my own if I have to for guardianship. I have had DHR on my mother‘s case for over a year and two months and still have had no appointment with a lawyer – nothing.

The state is a waste of time and the American medical system is a waste of time. The doctor at the ER understood my concern and tried to find a way to hold my mother for at least 72 hours whether it be a psych eval or a need to be monitored physically but because she answered three or four questions correctly like “what is your name,” “what year is it,” and, “who is the president?” and because her vitals were good and her test results were negative for any breaks or internal damage, she could not be held against her will.

Now, go back and read this story again and tell me why, just because she says “I’m OK,” she could not be held. What kind of decision making and what kind of serious ridiculous danger does a person need to put themselves in – she is clearly a danger to herself and needs to be evaluated – yet there is no ability to hold her? She needs to be given the proper care and I do not have the power to make that happen because I have no legal power when it comes to my mother.

She refuses to offer me any leniency or cooperate with me and I am done with being put in the position of a doctor telling me “you need to take care of your mom” and me knowing I need to do certain things to take care of my mom, but yet being pushed away and out of the picture by my mom and the doctors – it’s a total cluster fuck and I am about to lose my mind.

If I thought I was losing my mind a year ago, well I had no idea how bad it could really get – and I know it’s only going to get worse.

Hello depression, extreme and uncontrollable anxiety and overwhelm. Welcome back.

A Lifetime Ago

11 years ago today, where we used to live in Coosa County. Actually this was taken in 2004 but I edited it and posted it 11 years ago today.

A lot of days I miss it. Not today, but a lot of days. I’m also very grateful for where we are now in many ways. Especially with depression, but maybe for everyone, peace comes and goes.

I see people strive so hard to attain peace when the reality is that it just comes and goes. Sometimes, it’s even harder to attain when you’re working so hard to find it. Sometimes, most of the time, if it’s to be had it’s just right there within. That’s been my experience.

We are human. It’s hard to be at peace in a world where you see so much that is wrong – abused children and elderly and animals and women and even men, hell, people in general. Wars. TRUMP. Capitalism. Most everyone getting the short end of a very fucked up stick… Yes – if you have any compassion or heart at all, if you care anything at all about others, it’s very hard to live in this world and have a constant feeling of peace.

But, we can speak kindly, offer a hand, take responsibility and apologize when we have not behaved our best, and do our best not to be a part of the problem. Of course we always will be because for most of us there is no way not to be a consumer. But you get what I’m saying, right? Peace comes and goes. Good times and bad times fluctuate – just like weight and the economy and lots of other things.

The only certain thing for me is that one day I’ll be dead and a few generations after that I’ll be forgotten and cease to matter. I intend to make it count while I’m here – and that’s what we did back then. I’m grateful to be where I am today. I wouldn’t trade a thing for my child. But the days back when this was taken? Not even gonna lie. Best days of my life.

Nothing can beat the freedom of that life. The people I had around me. The beauty and seclusion of where I lived. The lack of worry and responsibility for another human being…. Easy times. And we knew it. And we lived it to the fullest. And I’m grateful for every memory and experience. ❤️❤️

I hope that you have a lovely day today…

All the love,

C.

Don’t Be Embarrassed | A Fibro Post

I read a great article tonight about fibromyalgia and it showed me something very important. I am reactive because I am embarrassed and ashamed.

Here’s the article:

Fibromyalgia and complex trauma are connected in so many ways. Do you deal with any of these symptoms?

22 “Embarrassing” Symptoms of Fibro That We Don’t Talk About

I don’t deal with all of these, but I do deal with many of them.

For me the most embarrassing thing (and the thing I get defensive about, and now thanks to this article I realize and accept that it’s because I AM embarrassed) is that I’m “too young” to have ANY of these issues.

People who don’t understand this kind of illness look at me like I’m nuts when I talk about my pain or my exhaustion, and tell them that those things are part of the reason I don’t go out much, but the MAIN reason behind my anxiety is that I don’t want to puke or get a messed up tummy in public.

I don’t make a lot of plans and I really don’t leave the house very much because between CPTSD and these symptoms, my anxiety is constantly through the roof – which leads to regular panic attacks and to depression in itself, in its own way, on top of “regular” depression.

I was recently diagnosed with both Celiac disease and major depressive disorder and put on a whole new cocktail of medication for depression (celiac is only treatable by diet, basically). And as the article says, all the meds have their own symptoms. But it makes me crazy and embarrassed when people say, “you’re not even 40 – you can’t possibly have that many health problems.”

They often have the same reaction – you’re just making excuses. It’s SO embarrassing when they say that it’s just nerves because I’m too young for any of that stuff. And it’s disheartening when they say things like, “you’re just not trying.” Like, you have to be 50+ to be excused of these symptoms.

I fall down every so often because of my joints and I often have a hard time keeping my balance. Sometimes I think people probably think I’m drunk. That’s ok, because that’s how it feels.

I also drop things CONSTANTLY because of sudden weakness in my hands and random shakiness. I have turned into Miss McButterfingers. That’s hugely embarrassing to me – especially when you drop the same thing like 7 times in a row before you finally have a grip on it.

And, the worst thing at home (which causes some tension in my relationship) is that my brain doesn’t work. Literally, if it’s not music I can’t focus and I’ll forget what I’m doing while I’m doing it. Even reading a book takes ages now because my brain can’t comprehend what I’m reading half the time. Homeschooling is SO complicated, even though I have notes and a curriculum to follow with my son.

Even writing blogs and these posts here, I have to read and fix them a few times (and usually still have errors I see and fix later). That’s hard because I love to write. I hardly blog anymore because of it. This post alone took over 45 minutes to write. That’s ok – insomnia means I have nothing better to do at nearly midnight. ((thumbs up!))

It complicates everything. It even effects friendships – but it’s generally me, not them. It effects moods and the way I process and see things…as well as how I react, often…to many things. Those who stick around, well, I don’t know why they do. It really is (and I am) too much for people. So…such is life.

I don’t share this to complain or to simply verbalize my experience. This has been therapeutic. These are real issues and I’m grateful to have read this article with quotes from people who go through the same things.

It doesn’t matter how old you are, how much money you have, what your ethnicity is, where you live, what you look like…having any chronic illness is HARD. It’s good to feel united with others who deal with these issues even if it’s just in an article on the internet.

If you are one of the many, many people who struggle with chronic illness, you are not alone. I see you when you’re invisible, I hear you when you’re silently struggling.

I support you and believe in you.

Lots of love,

C.

My First Recording (LOL)

Oh dear. The things you come across thanks to digital technology and usb drives.

Disclaimer #1: I HOPE that this is the worst sound quality I will EVER upload. There is no way I could ever recreate the horrific-ness that is this recording.

Disclaimer #2: My guitar playing does not sound this bad in real life.

Believe

Guitar recorded into GarageBand, percussion and synth added in GarageBand

Image courtesy of Google

The Backstory

This is the first song I ever (tried) to record. I had no idea what I was doing with GarageBand. I no longer have access to the original GarageBand file for this. I deleted it and have never shared this because it was SUCH CRAP quality. I have a reason for sharing it now, though.

I have since learned many things, not the least of which is to invest in a midi controller or a quality recording mic if you want to record your guitar playing and not to use the built in mic on your computer. You work with what you’ve got, though, and that’s what I had (and still have if I want to record my own guitar).

I also learned that using the pedal I used with this was a no-no for raw recording. It sounds like a dying cat in this file. Baha! 😂

So, anyway, back to the story. I was trying to learn to use GarageBand and so I tried to mimic some of the sounds I was hearing in some of the GarageBand instrument loops and managed to (sort of) play by ear this guitar track and record it into the app. I then added percussion and synth loops with the guitar bits to create a full song.

Let’s be honest: it’s not all that good. It kinda…well…sucks. But THAT’S OK! That’s the whole point of sharing this.

I came across this video I made of the song and laughed so hard at myself. I decided that I wanted to share this as an example of how you never stop learning, and how practice will never make perfect because we are human but it DOES make you better.

I thought I’d deleted every single attempt I had made to make this recording work – I even tried a noise reduction software and it was so noisy that there was hardly any sound left when it was finished converting.

Listening to it now? The song itself was not bad. It was just that I had no idea what I was doing with the tools I had to work with and I gave up trying with this song because I didn’t believe in myself, and now I don’t even remember how the song goes.

I tend to create stuff on the fly with guitar. I never write down chords or score anything, I just fool around and play what sounds nice and try to create something out of it.

Lesson number three from this for me was to always make notes of what you’re doing because two years down the road you will NOT remember how you did it or what you did unless you write it down. Dorie always used to say, when we were working on servers or computers, “WRITE IT DOWN. You’re gonna regret it if you don’t write it down, I guarantee you.”

Well. That applies to lots of things in life, and making music is one of them.

Ultimately, the point is this: if you wanna make music, make music. Just start. Don’t be afraid of it sounding bad – you will only learn from what you do wrong and the more you screw up the better you will be (and the more comfortable you will be with it).

That, too, is true regarding lots of things in life – if not life itself. Don’t be afraid. Just do it. Believe in yourself.

I know. “You hardly leave the house, what are you talking about – don’t be afraid and just do it?” That’s what you’re saying to yourself if you know me or follow my blog. Truth is, yes, I’m still working on that in general. It’s still not progressing very far; nonetheless, I’m working on it.

But, I believe it’s worth using your own flaws to try to help someone else while you’re trying to help yourself. I do that with my kid all the time. I have an 8 year old who thinks he is 17. The internet no longer scares or intimidates me. Heh… 😉

Now then, I’m gonna eat my 10PM yogurt and take my night pills and leave you with this: it will not hurt my feelings if you’re sitting there laughing, or cringing as (if) you listen to/read this. I know you are. I see you cringing. Cringe on. We all gotta start somewhere. 😂✌️👌

**it really will sound less cringe-y if you use headphones.

A Thank You

Today I received the most unexpected “thank you” note. It’s said, “thank you for sharing your story with me,” and had a nice note alongside that spoke about art and creativity and the healing of trauma, grief and broken spirits.

I want to thank YOU, for much the same thing.

I think we often forget that a person’s art IS their story – regardless of the type of art they create – and that’s where I’ve focused my mind this afternoon. When we create any kind of art, even when it’s not a piece of writing that “explains” what’s in our minds, we are actively releasing SOMETHING. Whether it is good or bad, whether it is joy or pain, beauty or darkness, we are actively expressing our hearts in any creative endeavor that we are a part of.

I truly appreciate the kind feedback here, at Instagram, and all the other places. I appreciate YOUR art and stories so much. It’s a wonderful way to remember that we are really all the same, just living our own stories…even when we aren’t sharing our own out loud.

Thank you for the kind response to my sharing of my music. I was really very unsure whether it was “worth” sharing, since I only create it as a hobby. Turns out it’s much like my experience with sharing photography and writing – people enjoy other people’s art, they enjoy SEEING another human being, and you get to know other people who create the same kinds of art, whether it’s photography or writing or music…

I’ve enjoyed “meeting” so many different people since I started putting that stuff out there. It’s a blessing to get to know and learn from you.

It’s always been one of my greatest joys to share my creative pursuits and my spirit with the world. Thank you for encouraging and reminding me how important it is for a creative person and artist of any kind to do that.

I’m thankful for, and blessed by, you. Keep expressing yourselves in your ways, too. And stay awesome.

All the love,

C. 💜