Instagram and Discrimination

Here I am, working hard at developing new friendships and finding joy in my day using Instagram to post my journey both with tarot and Alzheimer's only to find myself blocked. I'm sure this is frustrating to anyone, but for me it is almost devastating. I'm wondering if it is a sign that it's time to give up. To slink into the hole of despair that I see others with life altering events fall into. Damn. What is wrong with this world that is being taken over by AI (artificial intelligence) where you can't even speak to a real person anymore? My condition requires dealing with a real person. Someone who can explain things calmly to me. 

As you can see, I'm just venting here. I know there's nothing I can do. No, I'm not really ready to throw in the towel. But, I certainly wish there were some way to understand why I was shut down from commenting for the response of "yes, I will send some to you later". to someone. I can't see how that could be thought of as spam or against community standards. Today, I got shut down again immediately on my first comment which was, "I'll bet this tarot deck becomes one of your favorites. " 

One of our group is thinking that they are targeting any of us who have anything to do with the witchy side of life. We who understand witchcraft knows that to be a witch does not make one a follower of Satan. That would be like saying that everyone who owns a gun is a murderer, or anyone who eats twinkies is fat. To me that smacks of intolerance (on top of total ignorance). I can't believe that this country is going backwards instead of forwards as far as this goes. 

If anyone has any suggestion, please feel free to share. I'm not feeling very positive at the moment and that's not a space I care to be in. 

Clumsy with Alzheimer's

I'm sure I'm not the only one with a progressive and incurable disease that sometimes thinks "They must have made a mistake." But I'm finding myself moving more towards the middle stages of Alzheimer's as I'm becoming more and more clumsy. I drop everything, I knock things over. I hit my head on just about anything. I trip. I fall. This morning hubby wouldn't let me water the garden since I took such a bad fall the other day cracking my head on a metal pipe. (Still aching all over from that one.)

Wondering about this had me Internet searching and I found several places that mentions this as a side effect or Alzheimer's. Well, poop. I guess I missed that. I expected to forget names, appointments (oops, forgot to get my lab work done again), people, places, directions. But, I didn't realize that feeling like a drunken sailor was part of the package. Thankfully our house has lots of walls and hallways that help me maneuver in the early morning. Apparently the brain deterioration changes vision and depth perception which leads to the awkward feeling that causes some of these annoying things. 

I suppose I'm just going to have to slow down (it's called the Alzheimer's shuffle) and try to keep from harming myself and making my hubby crazy with all the bumps, cuts, and bruises that magically appear without me having any memory of what caused them.  

On a lighter note: 

She is the sweetest thing (Belgian Malinois) and makes me smile. Her name is Cassidy and she will be 2 years old next week. 

Hording and Alzheimer's

I have become a hoarder. I have a NEED to get more books, more tarot/oracle decks, more crystals on a daily basis. I feel panicked when I don't have a used book or other item in my list of things to expect in the mail. No one can read all those books. But, I have to have them. I know that it has become a problem. Not enough that it cause us to not pay bills, save money, or anything like that. The things I order are very inexpensive and I certainly spend less per week than if I were a smoker. However, it worries me. 

So, I went on a hunt and found this: "By hiding and hoarding things, the person may be trying to have some control of their situation. They may feel they need to stockpile items." (This is linked to the Alzheimer's group in the UK). 

This all started when we moved to Texas where I am alone all day. I have nobody to talk to except Internet friends. Hubby is off doing his own thing all day and then watches TV all night. Getting new (okay, mostly used) things in the mail is my bright spot of the day. Not that I'm bored. With a large home and property, chickens, cats, dogs, birds, and sheep, I have plenty to do. My hobbies fill many hours of my day as well. But, still I get that panicky feeling and just get that itch to go online and order something else. 

I am thinking that it is almost like being anorexic or bulimic. Another form of trying a way to control something that cannot be controlled. Okay, I admit that deep down I am terrified of losing my brain to Alzheimer's. I realize that I am frantic in devouring as many books as I can to keep that brain from melting down. While following my doctor's orders to learn new things I keep adding things to learn from, like researching new crystals or different forms of divination. I also understand that what  I'm doing is masking something that I don't want to face, not only the Alzheimer's, but the loss of my son. If I ever allow myself any quiet time I will lose everything.

Now that I've publicly vented my fears I had hoped to feel better about it. I had hoped it would make more sense. But, well, no. I do appreciate having a place where I can put all these thoughts though.

 

Some of my crystals. They are pretty.

The Suddeness of Death

A man in our town, who actually was our plumber, was killed in a car wreck. I am feeling kind of lost. I didn't know him well, but, since I lost one of my sons from a motorcycle accident it brought up again how life is so fragile. Here one moment and gone in the next. It is very difficult to comprehend. 

Fortunately, I do have certain beliefs that make this easier as I don't really feel that anyone dies, just changes composition. But, there's still that wonder of what they are doing right now, what do they think of there time here, or, well, I don't even know what else to question.

There are no answers. There is no proof. Yes, a lot of people have different beliefs and faith that works for them. I spent years blindly following that faith without question. but the more I study, the more I realize how organized religion had duped people into not thinking for themselves at all. I'm grateful to have had my diagnosis because it sent me on a search to learn more about who we are and about our life's purpose. I suppose most of us just think about the "me" of it but I've come to understand that we are all one in spirit. We must love one another and strive to be all that we can. To help others, to be kind, to care for mother earth. 

We can't control what created us or know why we were created. We can only know that each of us is here for a purpose. It is important to seek out that purpose. And, when we have fulfilled our purpose, we are taken back to reflect, learn, and do better the next time around.

I'm sure that my thoughts will be a big turn off for most. It's just my opinion, as you have yours. We are all entitled to our opinion as long as we don't force it on anyone else. This is just my rant, my rave, against that which I do not understand. 

Peaceful view out my front window.

Role Models for those with Alzheimer's or Dementia

 I have some "heroes" or maybe just role models helping with my journey down the dark path of Alzheimer's. One being Michael J. Fox and the other being Patrick Swayze. 

Michael J Fox, comedic actor best know for his roles as known for his roles as Alex P. Keaton on TV's Family Ties, and as Marty McFly in the movie Back to the Future, was only 29 when he was diagnosed with Parkinson's disease. He has battled with its effects for over 30 years. In an interview with Smithsonian Magazine he said that he’s been able to remain optimistic because of his love for his family and the fulfillment he finds in helping others who are struggling.

Patrick Swayze, an actor, dancer, and singer who was named “The sexiest Man Alive” in 1991 by People Magazine, died at only 57 after a two-year battle with pancreatic cancer. His wife, Niemi Swayze, repeated in an interview what he had said to her:  playing even a small part in helping change the lives of those who are fighting the disease -- or their loved ones -- for the better is a "great honor."  He is another hero of mine as he never gave up. I can only hope that publicly voicing my journey dealing with Alzheimer’s/ dementia, is helpful to anyone who is dealing with any long-term issue to see that we have to rejoice in what time we have, not what time we might not have. What we can do, not what we can’t.

“How do you nurture a positive attitude when all the statistics say you're a dead man? You go to work.” - Patrick Swayze

That's right. Keep going. Keep putting one foot in front of the other. Let's look at what we can do instead of what we can't. Let's enjoy the time we have instead of fretting over the time we may not have.

A Mala bracelet that I made to repeat the mantra shown. I do still have intelligence. Maybe not as much or sharp as it once was, but I still have it and have to remember that as long as I'm still learning new things that I am on the right path.

“Alzheimer's currently has no cure and no survivors. But this will change.” – Alzheimer’s Association - @alzassociation

Night Terrors with Alzheimer's or Dementia

Recently I posted this on Instagram:

Having had night terrors or hallucinations where I wake up to a scream, my own, and see someone/something looming over me, since I was a child now presents different set of possibilities. Always terrifying, but something I’ve become used to now has me considering the possibility of demons or angels. Hard to tell as when one pops up unexpectedly, well, there goes the scream and they scurry away leaving me breathless and confused.(Although night fright is common among persons with dementia and Alzheimer's disease, I don't think it is related since I have had these since I was young.)

We know the tower represents an “aha” moment in our lives. Towers can fall when foundations are weak. Are my foundations weak? Is there a lesson I have not learned? Is there something that I am refusing to face? Seems odd to me that this has been happening for over 50 years and I still can’t connect them to anything in particular.I will hang on to the words, courage, faith, and fighting spirit and wait to see what unfolds.

I got the most interesting response from one person: "Ew how horrid for you 💜💖"

Well, I had to go back and assure her that this is very infrequent, so not really all that horrid. And, as it is not real, there are certainly more awful things that one has to deal with in reality, yes?  

On a brighter note:

Our two Anatolians have a job..... to protect our sheep from predators. However, they don't know the difference between a coyote and a skunk. Here they have "treed" a racoon. (The racoon was able to escape.)

“Alzheimer's currently has no cure and no survivors. But this will change.” – Alzheimer’s Association -  @alzassociation

New Alzheimer's Drug

They have come out with another new drug to slow down, buy some time, not cure, Alzheimer's in people with mild or early stages of cognitive impairment. Leqembi, developed in Japan, is an antibody that is designed to remove the sticky deposits that clog up the brain. With a cost of about $26,000 per year for the drug, hospital visits to receive the infusions, and required brain scans it seems a bit financially prohibitive for most people. In addition, in studies there were incidents of brain swelling and hemorrhage, or brain bleeds in (only 25% suffered neither of these side effects) too many people for my liking. The FDA has included a warning on the box that states that there is a risk of brain swelling. In order for physicians to prescribe it they must agree to go through a government database. 

According to the Alzheimer's Association, there are over six million Americans who are living with Alzheimer's. 

At lease they're trying. It sounds like another drug that I won't be using but I suppose they must try creating new drugs and watch people die from them in order to learn how to make them better. 

They haven't come up with a cure for the common cold, so I don't see my ridding myself of this disease in my own lifetime. Maybe we just need to accept that sometimes it's just that our time has run out and go out with grace instead of battle. It's a nasty way to have to go out though.

On a lighter note my garden is doing dismally this year with the wasps and grasshoppers devouring anything the high heat and lack of rain has left for them. But, my rosemary is doing well and, when cut,  dried and burned, fills the house with a wonderful scent.