I keep wondering what the point of anything is. I am not doing well and I am not happy. I tried to be. But truth is, I have pretty much cried for the last 3 days straight. It’s like crying acid. The tears hurt my face….and then my eyes become impossibly dry….because I have Sjogrens. I used the special eye drops the neuro-opthalmologist gave me. That made my eyes worse.

66 degrees Sunday, with 30’s and heavy snow today. It’s nice that Easter was pleasant for people who acually have family get-togethers or do something outside. I got to sit here, stare out the window, and watch multiple drug deals. Whoop, whoop.

It really sucks to be old and worthless 😦


I knew it was Easter. It took me until almost 1 PM before I really thought about it as a holiday. Earlier I had read about the Pez Easter egg hunt, but it still didn’t sink in. That got me thinking even more about my relationship to holidays. Basically, they just don’t apply to me. I am old and by myself. I forget days and times easily. I miss quite a few things going on around me because I am not very aware of the day and hour…or the month. It’s all this amorphous blob on the periphery of my consciousness.

My life revolves around my bed, my chair and the bathroom, with random forays into the kitchen. I try to remember to take my meds and to keep the cat fed and watered. Funny how that takes up most of my day right there. The rest of the time I am staring out my window, staring into space, staring at the computer and every once in a while, I remember to stare up at the TV.

There really aren’t many times that trance is broken. I haven’t been out for my mail, I rarely visit with anyone, I don’t do phone calls, not many doc appointments any more. I realize I have given up on life in Utah. I am just warehoused, hoping for a change. In too many ways…I have just given up. I feel like I have tried a bunch of things, they didn’t work, and I don’t know what else to do.

When I got up from my chair at noon to cook something, I was so weak and dizzy that it was terrifying. I don’t want to hurt. When my legs give out underneath me, things hurt. When I fall to the floor, it hurts a lot. Cuts hurt. Bruises hurt. Thinking hurts. Doing anything is painful. So I do less and less….of all of it.


I saw myself in the mirror and I looked like I had a stroke. I was only strong enough to hold the camera up for one picture, but it’s the wrong angle to show my drooped eye and mouth. I feel like the autoimmune diseases are getting to me. Sooooo many lupus sores and the MG weakness makes gravity feel a heck of a lot stronger.

Hmmmm….sounds like I am coming back around to the post I didn’t publish. I might as well add it here.

I wish I knew what’s going to happen to me. Each time I have thought it was only a matter of weeks, and I would be out of here, it hasn’t happened. My plans have been dashed a hundred times.

I wander around my apartment, the building and the city, looking for purpose. Months ago, I quit all my disease support groups because there is no point. If I am not going to get medical help in Utah, what is the point of even thinking about it? The only “remedy” offered to me is steroids. Sure….they will make me almost instantly feel better….but the long term effects are worse than just enduring things right now. I led a charmed life. Decades of steroids didn’t kill me…yet 😛

I went over to the senior center to get my re-made senior ID. The first one did not work. I don’t want to keep going to the senior center, I just want to have the card to show if I go to a senior center somewhere else. Proof of being old?

I really need a new handicap hang tag. Even if I never drive anywhere, I need one if I get a ride….especially if I have to go in a regular car and take my walker. I just made another appointment to see the doc after they cancelled my last one. Nothing has happened with my wheelchair repair paperwork. Lots of things are discouraging!

Every few weeks I look up info about my hernia. Everything says it has to be fixed…and that surgeons who specialize in such surgeries can fix mine. Without treatment, it will kill me. After I read a bit, I get so upset I cry and give up. It’s pretty crummy to live in the richest nation on earth…and be so devalued as a human being.

Should I talk about my dreams again? Should I plan for them? If I knew for sure that I could escape this place, I would give away almost eveything in this apartment. But….if I am staying, there’s not much extra. I am in a very stuck place right now.

OK….back to today being Easter. It’s a relatively decent spring day. A little breezy, mainly cloudy, but with some blue sky, too and the temperature has been stuck on 59 degrees for hours. I have no oomph. I want to want to go to the park or to Temple Square for pictures, but I feel too weak and sick. I am rather attached to the bathroom. My guts are madder than usual. Sick, weak, queasy….what else is new?

Huh. Late afternoon, the temperature zoomed up to 66!

I don’t feel very uplifting. My illnesses aren’t very invisible any more, but there is a lot more underneath the façade, than what is showing!