My wife has brain cancer :(

I know it has been a long time since I posted. My art has fallen by the wayside. July 11, 2016 my wife went into the ER because she was having trouble talking. Next thing we know she was having a tumor removed from the left side of her brain (that Thursday). Pathology came back on the tumor – it was a GBM. A grade 4 (incurable) glioblastoma multiforme. The most deadly of the brain tumors. It has been a roller coaster ride since then.

I am on here today to promote my go fund me account set up to help us with Laurie’s treatments and getting her a deck.

Here is the link to the account – help Laurie

Thank you so much for even just looking.

This is not the kind of walk I want to ask anyone to take with me.

Alex

 

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Photo 101, Day Six: Connect & Tags

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Afternoon Sky 
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Tree Tops

I have not done any photos this weekend except for these two. I ended the week with the flu. I have been laying on the couch all weekend and still feel like a truck hit me.

These photos actually have a point. They were taken from inside my home through the window. I have a setting on my camera for taking photos through clear glass. Most of my weather photos have been taken this way. I have been trying to get out and take them from the yard but that is not always possible. I have Chronic Fatigue Syndrome and I don’t leave the house much. There are several reasons for that. One is I just don’t have the energy some days. Another is that my wife has social anxiety and that keeps us at home. Then there is the fact that we just can’t afford to go anywhere. I can’t walk very far and neither can my wife (she has a cripple foot) and we don’t always have the gas to go any where.

I am not complaining by any means. I have been dealing with this since 1989. I am just sharing that most of my photos (the ones of the sunsets, tree tops, etc) are taken from within my home looking out the window. It is another reason why I am trying to get out and take new photos for the lessons each day.

I connect to the world outside through our windows. I am always looking out and looking for a photo to take. My computer is how I connect with most of my family. They are in Canada and I am here in the US. Of course I have family here that comes from my wife’s side. It is also how I connect with you, the person reading this :).

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My View

 

Not so easy

When I revamped my blog I had every intention of posting daily. I am finding that is not an easy thing to do. It is not because I don’t have anything to post. My mind is filled daily with stuff I would love to get out of there and down here. It really isn’t about not having the time. I spend a lot of time playing Forge of Empires, Candy Soda Crush, plus a few other facebook games that I do in the morning. So what is the problem?

I think part of it is energy. It takes a great amount of energy for me to do anything that requires a mental effort. It is one of the CFS (Chronic Fatigue Issues) I deal with. Physical exertion drains it too, but I seem to recover from that easier.

Right now I am dealing with a lot in my life. We have adult children who have moved in with us and that is not a positive thing. My wife is dealing with withdrawal from her anti-depression medicine and it has been a nightmare for her. She is my world and I will not let her go through a minute of this alone. I have not fully dealt with the loss of my twins (that is a separate post). We sold our acreage and moved back to the area my wife grew up – this was a positive thing, except the move was a nightmare.

I have been sick 26 yrs and just about 9 mths (on the 13th). In all that time I am still reminded daily of the limitation of my illness. I still try to a normal life. Each and every day my body reminds me how foolish I have been. That is what makes doing this blog daily not so easy. I will sit in my office/art room and not have anything to do but write this blog. What keeps me from doing it is the mental exhaustion I am feeling. Today I have pushed past it and written this one. I am hoping I can keep it up.

Thank you for the patients, your time, and your ear to bend.

Enjoy the walk and don’t forget to look up and take in the wonderful colors the world has to offer.

Alex

Living with CFS

I have been living with CFS (Chronic Fatigue Syndrome) since Jan 1989. It is why I may not blog for awhile. For me my energy gets zapped the most from cognitive tasks. So the more time I am on the computer the more I crash. Right now it is very hard to think and to write.

For those with CFS you understand what I am talking about. For those of you who don’t have CFS it can be very hard to understand. One way I like to describe it is for you to imagine the worse flu you have ever had and then imagine it never going away. Take note how tired you are when you go to bed, then imagine waking up feeling like you did when you went to bed. That is what I go through every day. My muscles and joints ache and hurt daily. When I have spent too much time on the computer (or reading, or any mental activity) my brain feels like a block of cement, or foggy. Watching television is actually the only thing that helps me to recover from to much energy expenditure. Expenditure of energy through physical activity causes me to crash but I recover from that quicker then mental expenditure. It usually takes me about 2 weeks to recover enough energy to be able to be active again. During that time I usually lay on the couch and watch TV.

CFS is not just a matter of being tired. Being exhausted does not mean you have CFS. For me it involves a sleep disorder. If I do not take my sleep med then I will wake up every hour on the hour.  I will also not get any REM sleep. On the sleep med I get a solid 4 hours of sleep and then start waking every hour. It involves chronic pain of the muscles and joints (a form of fibromyalgia where exercise does not make it feel better). It involves a fatigue that involves every part of your being. Imagine your jaw muscles being too fatigued to chew or swallow. It involves cognitive problems galore.

That is living with CFS in a nutshell. I will write more when I can.

Take Care

Alex