Yesterday the temperature was 69.4. It was comfortable. Last night was in the 40’s. It’s still in the 50’s at noon. The air is clear and crisp. Even though I don’t feel well, I feel an overpowering urge to get in a vehicle and drive! I need a handicap van. In a matter of hours, I could be gone from Utah!

When I lived in Vermont, I was usually ready to flee as soon as the garden froze to death. It was down into the teens in Vermont this week….and the weather is changing here. I think after all these years, it’s programmed into my DNA to take off and go camping now.

I have felt soooooo stuck, sooooooo long in Utah!!!!!!! I spend day after day after day sitting in this chair that used to be comfy. I stare out the window. That’s my whole world. I hardly go shopping or do anything. I just sit here in physical agony that has become a mental prison. Pretty much every moment of every day, I am aware that if I need to go to the ER, they very well might let me die, since they have approval to not give me IVIg.

I watched a van drive out of the parking lot and imagined myself in it. Really….it’s mind-boggling to think I could just be gone from here. This has become a place of hopelessness when it comes to healthcare. I would love to have a fresh crop of docs to look at my hernia, to deal with the MCTD, MG and WNV, to do the whole work-up for CDIP, to give me IVIg.

Twelve more days and I have to pay rent again. I keep thinking I would rather keep it and run! I wish I could afford a handicap van for me and the chair and a little fiberglass trailer to live in.

You know….it really sucks that the more disabled I become, the more elaborate of a set-up that I need! I wish there was room in a high top van to both stow my chair and live in the van. Then a liquid oxygen tank or oxygen concentrator has to fit. And I then need electricity to run the medical equipment. I get soooo frustrated! In order to live in an apartment, I have no money left to do anything. If I have an apartment, I cannot afford a vehicle. If I have a vehicle, I cannot afford an apartment. I hate money 😦

I would be happy just to have a handicap van. Maybe I could put a piece of foam down to sleep? It is very, very hard to be so limited in where I can go. I miss just going for a drive. The whole Paratransit thing is a joke. I am not allowed to use it most of the time. When I had unlimited use, I had no money to utilize it. Now I have stickers for free rides, but cannot use them to go to a doc unless the temperature is under 40 or over 80. That hasn’t happened yet.

At least I can still dream about what I would like 🙂  I could always tow a fiberglass trailer. Then leave it parked while I explore in the van.

There is a man from my church who is going to try to find me a lawyer who will set up a trust fund for me to get a handicap accessible vehicle. Then they would start a Go Fund Me account, or something like it to get money to go into the trust fund. Several people around here have said they wanted to contribute. Most people in Utah who know my story would like to see me able to escape from this state. When the judge ruled against my IVIgs, I wasn’t the only one bummed out.

I am having a hard time being patient. The idea for this came out months ago, but nothing has happened. As always, I am at the mercy of people with more money, connections and brain power than me. People with those attributes have busy lives. In contrast, I mostly just sit here like a stupid lump 😦 Every day for me is both fleeting and f-o-r-e-v-e-r. Days like today I am willing to leave with just me, Olive, the wheelchair and a few things.

I hate, hate, hate being a beggar. I can’t afford to do much of anything on my own. I have thought about alternatives. I could do what my doc said last year….use the rent money to buy a plane ticket, but I still would need somewhere to live and somehow to get around. It seems like the most cost effective way to move, have transportation and a place to sleep until I figure things out is a handicap van. Lord knows, homelessness again scares the beejeepers out of me. I am too sick to last long without some sort of stability.

It’s hard to come up with ideas about how to improve my life. I can’t pop the hernia back in me or make the MG go away. I can’t stop the arthritis or the effects of light, heat, pollutants, etc. I have no control over lots of bad things. Chronic illness sucks…there’s no way around that. Poverty sucks….I don’t know how to get richer. On one of my travel groups, someone asked how to go on the road with disabilities. The first thing that non-disabled folks said was to eat better to keep from being disabled. My first reaction to their advice is to want to put my hands around their neck. It seems that every few years there is a new and trendy snappy retort. I have lived through quite a few trends. I love this blog post “Stupid Things Often Said to Chronically Ill People”. Or how about “15 THINGS NOT TO SAY TO SOMEONE WITH A CHRONIC ILLNESS OR INVISIBLE ILLNESS”.

I remember when I was younger and still did not fully understand my chronic illnesses were forever (like yesterday). No matter how many times I think I have come to terms with it….I haven’t. I say these things more to convince myself more than anyone else. My whole life has been one long guilt trip.

Last night I was again thinking about something that made me feel guilty for years. I thought I had endometriosis. My docs said I had endometriosis. When they decided I would die if I ever got pregnant again….and I only had a “one in a million” chance of pregnancy because of APS, the GYN insisted I needed to get my tubes tied. While he was in there, laparoscopically doing that, he spent half an hour breaking up endometriosis adhesions and he sent samples to pathology. Pathology said I did not have endometriosis. The doc said he saw every form of endometriosis. I felt like a fraud. I felt guilty for being in pain. It seemed like my fault for bleeding so much. My fault for looking like endometriosis and not testing positive. Guilt, guilt, guilt.

Then I got diagnosed with endometrial cancer through a biopsy and a D&C. Pathology said I didn’t have cancer. That has been a tough one. Somehow I feel guilty that I DIDN’T have cancer. I am also royally pissed about the infected surgical scar and resulting hernia. I have read and reread the pathology report many times. It says I had adenomyosis and the worst stage of endometrial hyperplasia. The whole thing reminds me of each medical struggle I have been through. It’s not my fault pathology doesn’t seem to work with me. It’s not my fault I was sick. It is obvious in retrospect that medicine is still something they need to practice.

Either yesterday or the day before I realized that I was feeling guilty…..not for anything I did, but just because I am always sick. In an instant, I let go of that and a huge burden was lifted off me. Unfortunately after a lifetime of guilt, it sneaks back until I am feeling crushed again.

It’s chilly and cloudy. I have spent all day examining my dreams, health and guilt. I have barely scratched the surface. Maybe it’s easier for people who don’t have so much time to think?????

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