Every time I think of that side of research, it makes me sick to my stomach. But….I also have to feel grateful. There are lots of ways to research. One way is to experiment on animals. Every time I delve into that, I wish I hadn’t.

Today I got this Google Alert about MG. Scientists got cells from a hamster ovary and made rats with MG better. Sigh…. I look forward to the day when all diseases are understood and there are straightforward ways of curing them. Until then, it’s messy business.


Sometimes my support groups wear me out. People arguing about religion and spirituality and death and dying and what med is better than another and what alternatives work. Some folks are convinced everything can be cured with diet, or a certain fruit, or a drink. Others are part of pyramid scheme companies to sell essential oils or algae or who knows what. Others tout the benefits of vitamins and supplements and others come along and say only the products from their company works. After a lifetime of this, I don’t think most of it makes any difference, except in the hope department. Hoping and believing that something works is often better than nothing.


I find that is true with religion, also. People without a belief in something, flounder more than people with a focus. I am of the belief that most religions will get us to the right place. Once I read the Book of Mormon and other LDS scripture, it added to my understanding of the Bible and God and the universe. I spent decades reading about and exploring all sorts of religions. I have a great deal of respect for parts of many of them. I would not be who I am today without all that searching and study. What scares me are the people who blindly follow without constantly challenging themselves with other ideas.


It’s like being a sapling in the wind. The more the tree gets blown about, the stronger it gets. The roots go deeper and the trunk gets sturdy. People need to be constantly open to new thoughts and ways of being…if only to strengthen what they already know to be true. There are lots of types of people and we all need each other to make a world. Diversity is a good thing. I do not understand why some people and groups get it in their mind that everybody else needs to think and act and look like them. The universe needs all of us.


I’ve been thinking a lot about the whole hospice/palliative care mess. Now that people have been dropping by to check on me, I’m rethinking the whole thing. I basically don’t want much help. I always chafe at the bit when I must have regular visits from ANYBODY. I didn’t like the intrusion of Meals on Wheels and I am quickly getting tired of being checked up on. I want to do things or not do things according to how I feel. In my ideal world, there would be a person paid to do my laundry or clean the floors or make my bed….but only when I felt like I absolutely had to have the help. I like paid people because then there is less mental obligation.

When I had the laundry lady, it got to be a drag because she stole stuff and because she was always dropping by to drum up more business. No wonder robots were invented! It would be a heck of a lot easier if I just had a washer and dryer….but they are not allowed here. The biggest problem is me. I think I like having people around…but I don’t. I love to sit here in front of my fan’s gentle breeze, lost in music and thought…uninterrupted by knocks on the door or a ringing phone. When I have a surge of energy, I like the freedom to go…for hours or minutes. Once I succumb to the paperwork pushers, I am bound by their rules. It’s tough getting old and wimpy while being old, opinionated and too darn independently grouchy 😛


I got a call today from another home health and hospice company. It made me want to run away from everything. I feel like I am back to the kid Wendy who built forts in the woods with other kids. When people annoyed me, I took back my wood and nails and found a place for my own private fort. I really haven’t changed much.


Two of the kind but worried women came by today. We talked about all the stupid rules in order to get home health and hospice. None of us like when they have helped us out in the past. Who makes up stupid rules? Who keeps them going? Oh! That reminds me…look what’s new near the laundromat! Somebody moved the garbage can so it doesn’t block the cross walk.

The dirt is still there where it used to be. There are no bolt holes into the sidewalk. It could have been moved at any time. How did it get put in the wrong place to begin with? A random worker not paying attention or caring? Then everybody else assuming it would not move or that there was some good reason why it was there? Who moved it? Another random worker? Someone frustrated by the stupidity? Way too many things become permanent and institutionalized because it requires less effort and no one is really in charge anyways. This garbage can is a perfect metaphor for many things gone wrong.