Yesterday on the WNV group, someone asked if any of us have had trouble reading since gettng WNV. That would be me. It’s a huge comfort to know a few dozen people are struggling with the exact same issues as me. Often, a question about something simple will trigger a huge response. For the first couple of years after WNV, I really did not want to admit to a lot of my cognitive struggles. I used to be smart. I thought it would come back any minute now. Sigh…….

But on the flip side….I hate support groups. Someone will write in saying how bad they feel…..weak, drooped eyes, etc, etc. I feel all sorry for them and maybe relate a similar experience. Then the next post is about how they hiked 10 miles or went to the beach for hours or went out dancing and drinking all night. I feel duped….and pissed! Obviously their lives weren’t all that tough. Sigh…..

The one that got me today was a woman bitching about getting IVIg…..all the pain and inconvenience. I wish I was getting an IVIg today!!!!!!

Hmmmmmm…..my attitude sucks. Must be my empathy button is stuck on off.

I suppose a quadraplegic reading about me complaining how hard it is to cook, or shop or hobble to the bathroom is thinking shut up! I wish I could do those things! Sigh…..

I am never happy. Either my guts aren’t moving and I am miserable….or they are like today, and I have to go to the bathroom every hour or less, and I am miserable. All day today, I have either been crying or on the verge of tears. Do I still have enough hormones to be hormonal? Sure feels like it.

Last year I got on the FrontRunner train and explored Utah. I am still waiting for some energy to do that this year. The BEST news today is that the smoke is supposed to clear tomorrow!!!!! My ear drums have been swollen and aching all week. I hope there will be fewer allergens in the air. We still have very high weed pollen and high grass pollen. Sigh…..

So, I had been putting off 3 doc appointments. I called each one and now ended up with 3 appointments in one day. I will need a doc by the end of that day! :-p

You know what else ticks me off? I was reading the church paper and there was this article about being frugal. Every single thing listed would be extravagant for me. I have looked many times….I have never found a blog by someone who is disabled and with my income. I want to know how they do it! How does someone eat for 98 cents per meal? How do they get by with virtually no leftover money after expenses? I really, really want to know how other people do it.

The people here are not very good examples. I only know of a few people who live on my income. None of them pay what I do for rent. Most have been around SLC long enough to get “housing”. They only pay a third of their income. It’s up to about an 8 year wait for that. I know one guy with the same income, but he has a roommate. Even with 2 of them, they seem to specialize in not paying rent on time. They abuse substances and one of them keeps pawning his government funded new wheelchair. I see him gimping by my window and just shake my head.

Quite a few people buy most of their food at 7-11. A constant diet of pizza and hot dogs with chips and soda. Yuck! I watch those folks trudge by foot or zoom by in their chairs…..back and forth, numerous times a day. I would love to know someone who inspires me.

I guess it’s a bad mood, disgusted day. I took a nap this afternoon for a few hours. That helped a little. I still don’t feel well, though. Today I have done absolutely nothing useful…..for myself or anyone else. I would really like to be up-beat. My voice has been half broken. When people go by and yell hi, my voice keeps saying ha-eye. I get discouraged because so much in my life is either broken, or up in the air. I am still waiting for the judge’s IVIg ruling. I need a few things finalized so I can then move on to what’s next. I feel like I have been hanging in limbo with way too many things.

I don’t do well without a project to work towards. Watching and waiting makes me crazy.

Just for the heck of it, I looked around at various Craigslist cities to see how much a wheelchair accessible van would cost. OMG! Even old ones are pricey….like many thousands of dollars pricey….for a van a couple of decades old. I like to pretend that any day now I will be strong enough to drive and take off….far, far away from Utah healthcare. I need IVIg to feel OK. All my troubles seem like the same old vicious cycles as the other poor people around me. It’s a good thing that drugs and alcohol have no appeal to me. I can see how people fall into that trap to try to avoid feeling hopeless. In reality, that crap just makes it all more hopeless.

Sorry. I am not very inspirational at all.

 

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