sinisterporpoise

Almost all of my class materials have been bought, except for the one the teacher decided to spring on his students the first day. Even though there should be some sort of policy against this behavior, IvyTech does not seem to have one. Coming up with $48 for the code would not be slightly difficult under normal circumstances, but my circumstances are not normal. As I write this, I am sitting in the Wi-Fi study lounge, taking a quick break from doing some of the coursework. It’s been a busy week and I have a lot to cover. The book does not come with a code in the bookstore.

The first item is public transportation. I’m not overly impressed with Terre Haute’s bus system, but I am glad it is there. Bus trips take longer than car trips, but they must accommodate all the stops in between. I even managed to get to physical therapy yesterday without having to be driven there. (Note: The roommate isn’t letting me drive while the arm is healing; I decided not to drive at least until two days after the tilt table test. While I strongly suspect POTS* or some other form of Dysatonomia, I would like confirmation if possible. At least I know I’m not the first spoonie to be cheering for a medical test to come back positive. We know something is wrong; Our doctors think we’re nuts or doing it for attention. One thing that seems odd to have done at 39 is to set the alarm for 5 pm and miss the bus to get to classes. Fortunately, even though this event happened today, my roommate took me to class. I really wish I could do something to properly thank Cathy for all she’s done through this.

I think I’ve rediscovered my love of computers, programming them, working on them (somewhat – I’ve never been too thrilled with hardware issues. Some of these repairs require coordination.) I’m not sure that server administration is right for me and part of me really wants to switch to software development. My primary objection to coding so many years ago was the Visual suite of programming applications and look-alikes like Delphi. These programming environments have been replaced by programming for the web. I’m perfectly fine with doing that.

The first week is over. I’m a little nervous about whether or not I can keep down assignments. The idea some professors have of skipping the lectures and putting the information down as PowerPoint presentations bothers me, but I’ll get to this over the weekend. At least the school has provided lunch from a local barbecue place for the past few days. Eating it outdoors yesterday was a nice break.

As for the Mind’s Eye Society, I need to pay my dues, and I’m going to do that anyway. Now that I’m not mad, I can see where they are coming from. They wanted me to be in better control of my actions and emotions. I believe this attitude comes from the games itself where someone can spend willpower to temporarily override what the game calls derangements. Real life does not work this way. Suppressing something temporarily only causes it to pop up somewhere else later. If the Changeling storyteller hadn’t been the target that night, someone else would have been. Sadly, the only person who gets any of this is the person with Graves’ Disease who had his own melt downs about a year ago before taking medication to suppress his thyroid. I don’t know how many of them also have the attitude that people get better. No one has any idea that people with Hashimoto’s get put on an emotional rollercoaster, whether they want to be or not. I think they’re getting that idea now.

Before I ramble too much, the issue is this. I can come back. These meltdowns are going to happen continuously until my immune system kills off my thyroid. (I hope it doesn’t go searching for something else to attack after it’s done, but I’ve only seen a suggestion that it automatically happens on extremely pseudo-scientific websites.) If I am concerned about not hurting people over this, the best thing to do is quit. It is no different than a baseball pitcher who has to give up his career after a rotator cuff injury. I may have no choice but to be on an emotional rollercoaster, but I don’t want to take everyone around me with me. I’m not even paralyzed by anxiety over this; I simply don’t want to do it. No matter how many times I tell myself it’s the right course of action, I just can’t bring myself to believe it emotionally.

I have not asked for accommodations, but it does not seem like I'll need the school to do anything so far.
 

*It may be okay to just say I have it in casual conversation. The same might be true for EDS. It’s just telling doctors what I have should be avoided unless it’s already been documented or they need to know. That makes them suspicious. At least I have confirmed Hashimoto’s Disase.

I’ve patiently waited for the reconsideration letter for SSI.  I know it was held up because they waited for records from my rheumatologist and the physical therapist. The mail came late today, but the letter I had been expecting arrived in the mail.  I prepared myself before I opened the envelope. The letter inside probably did not contain good news.  The first sentence of the letter confirmed the expected results. As before, I had received an ‘other work’ letter.   They were more specific about the types of work I could not do.  The letter said I can adjust to jobs that do not require no more than occasionally climbing ramps, stairs, ladders, ropes or scaffolds, balancing, stooping, kneeling, crouching or crawling while avoiding concentrated exposure to wetness, machinery, and heights.

All of these items seem to be carefully tailored to suggest that I could do my last job just fine as it required virtually none of these things, but it did require standing for long periods of time, which I also have difficulty doing. I wonder if this was carefully calculated to make me think I should feel guilty about being forced out of my last job.  It's hard for me to say, and I shouldn't attribute motives to an agency full of people who do not know me personally.

It’s not a surprise that the Social Security Administration would deny my SSI claim at this stage. The requirements for getting through on the first try are pretty specific, and I would not want to meet them. Making it hard to get is a good thing in a way, but it doesn’t make things easier for people who actually have lost the ability to work.  It’s a good thing I’ve got friends who can help me get through this, but they’re not exactly in the best shape financially, either.

It was not good news. It said that I could not get unemployment because I was not able and available. It included a penalty date, but it did not say when the penalty period would end. I assume this means it is an indefinite period, which means I am now stuck in the limbo of the disability system.

I would have been understandably upset at this letter, even though I expected this outcome. The other letter, however, added further insult. It was letting me know an IMPACT (Indiana Manpower and Comprehensive Training) session had been scheduled for me. I really want to cancel this because it’s a mistake, but I can’t afford to lose food stamp benefits right now.

I really wish life would just let up on me right now, rather than throwing one thing after another. It’d be nice if something happened that would make the current situation easier. And I seem to be losing appetite, another sign of depression. (Of course, one of my ways of dealing with depression is overeating, which isn’t good.)

 The SNAP issue was resolved quickly.  The workers figured it was some sort of common SNAFU with the main office in Marion County, who probably didn’t bother to read the official separation e-mail I sent them. It’s one less worry at least.

 Next, I went to the Catholic Charities building, which usually has a sign outside advertising the SafeLink program. No one put the sign out today, so I will have to wait for another time to use that method. This was a minor setback, and I can apply for the program online.

 With that out of the way, I set out for the Workforce building to see if there was anything that could be done with my unemployment claim.  I found out that it was still waiting available because I quit for medical reasons. I was told the process could take up to ten weeks, and there was no guarantee I would be approved. The worker still said I had to keep filing until the decision is made. (This does not make sense to me, but it just seems to be one of the hoops I have to jump through.)

 I wish I knew more about how to navigate this state’s systems, but it seems there are frustrations at every turn. Now it’s time rest and to recover the energy spent this morning.  Then, I can go on to doing dishes and baking bread.

When my GP at the time gave me the fibromyalgia diagnosis, he asked about my quality of life. I did not know what the phrase meant then. Even though I’ve seen more people use it as I’ve read about the experiences of people with disabilities, I am still not sure what the phrase means.  Perhaps someone else could explain this to me.

Does quitting my job lower my quality of life?  Some people would say it does. The state of Indiana Family and Social Services Administration seems to think that I’m still an able-bodied adult.  I can forgive them for this since they do not have my current medical records. Staying on the job and the stress that came over worrying about being fired would also fall under this broad category. Perhaps the promoters of this phrase are talking about something else.

Is my quality of life lower because there are days when I must rest because of pain or fatigue?  I’m not bedridden, unlike some other fibromyalgia patients. Even if I were, not everyone needs or wants a great deal of social interaction. Some people would be completely content alone in a library at the end of the world, and I would be content to live in such a world even if I broke my glasses. It seems that we must look elsewhere to find the phrase’s meaning.

Is my quality of life lower because I no longer do some of the things I used to do? True, I don’t do some of the things now that I would enjoy doing. As we mature, however, we stop doing many things we once enjoyed doing.  All it means is that things have changed. I still enjoy playing with building toys, such as Legos and Erector sets, but I no longer play with these toys unless a younger relative is involved.  It’d be fun to break out the Legos and build things with them, but other adults would look at me strangely. Yet another exploration of the meaning of the phrase falls apart.

Maybe people think my quality of life is lower because I use a cane.  I’ve seen the occasional look of pity I get from older people. I have also heard phrases like, “Isn’t getting older fun?” Plenty of people use canes and seem to be content with their lives.  A cane is simply a tool.  It supports a painful limb, and it prevents the falls that occur because of dizziness or muscle weakness.