The sun scorched my pale skin as I walked to human services. My eyes start to water and ache from allergies, it almost makes me wish for a terrifying thunderstorm. One staircase leads down and the other up, both equally important to use with no alternate route other than elevators of the same nature. The wait is shorter than the dmv, but the feeling is the same. I nervously look around and try to play a video game instead of eavesdropping, but I still hear conversations. The case worker calls my name and unlocks a door between the waiting room and her desk. Her desk is in a maze of other cubicles below a collection of windows resting atop a 30 foot high wall. Another interview and another pile of paperwork, everyone is a potentially fraudulently representing their case to the system and looking like a healthy young girl doesn't help much. I nervously look around the office as she asks me a series of questions as I stumble the answers out chaotically. There are all kinds of inspirational quotes on the wall and a few certificates. Very similar to my psychologists office, I guess similar personality types have a similar decorating style, except my psychologist has books and a better view. Even with the problems at work I'd rather be paid to take the paperwork instead of begging for mercy from the government. She hands me a piece of paper to sign, if I get institutionalized long term medicaid will take my property to cover the costs. I feel a little pissed off and ask why this wasn't handed to me before. If anyone should get it, my family deserves it for helping me over and over, but I guess doctors feel like they deserve everything for saving my life. I start hating the situation, I should be well and out helping others, not begging for a fraction of what I earned while I worked. At that moment I wish I wasn't disabled and didn't need accommodations, I hate asking for mercy from people, because they suffer too and it makes them pissed off when you ask for anything more than what everyone else gets. I feel like this stray cat someone didn't train right and I had to give away, I'm sure it didn't want to be that way, but no one taught it better. I know, it is like blaming my parents, that isn't right either. They weren't always there, but then they were good people and put all the energy they could into raising us. I could curse my creator, if there was one, but I'm alive I don't even know how I survived this long. I'm still waiting on an answer from SSDI. The other apparent way out is marriage or relationships, but I've been the independent one working to support someone who isn't working and it makes me feel uncomfortable to even think about. The pay off for men is having a child and someone to raise it, but I can't make up my mind on the ethical implications of possibly passing on a severe mental illness and birth defects to a child. Plus if the marriage goes badly I'll end up in poverty and may lose the child (not as I am right now, but I have seen it happen to someone I knew). Dating isn't a lost cause, but work is difficult and mooching off others makes me feel guilty. I know everyone feels like they deserve it and no one else does, there are plenty of jobs or employers who are a bigger drain on society than those who don't work. By this I mean con artists, the people who act like they are doing you a favor only to take your money and increase their power, the only services they really provide require little work and the work is generally done by someone doing all the work and getting paid half as much. I don't think it is fair that I'm living off others either and right now I sound like a hypocrite. I think people who are disabled who want to work should have a place in society. I think people who have no disability and take advantage of thier good fortune are doing something wrong and justifying for the wrong reasons. Don't get me wrong there are good people at the top too. People who have had advantages and they still found compassion despite the fact being rich makes compassion more difficult to have (you are rewarded for being pampered, your parents never took the time to make you appreciate what you have and felt bad about making you volunteer for the less fortunate). Anyway, enough of that. From that bureaucratic nightmare I went on to get lunch, because all that paperwork wasn't enough to get food stamps. Fortunately I have other ways to get food, but I need the money for food I can't get from food banks and for gardening (yes food producing plants are covered by the program). I travel across town to go eat some lunch, then end up going to a group. Most days are similar, half the time talking to creditors, beaucracy, charity and family and the other half getting treated for my invisible rare disease. The rest of the time I spend having, explaining, or coping with symptoms. Exercise, diet, meditation, medication, groups... I don't really have much time to enjoy and what I do people make me feel bad about, because everyone who helps generally needs something in return (which is fair and expected). Having the symptoms is terrifying, confusing and upsetting. Explaining them is embarrassing, frustrating and sometimes a relief (when people can relate or truly help). Coping is the best of the three, generally the best times I have are just managing the symptoms by taking care of myself. Today was okay, I didn't set my alarm like I thought I did, so I woke up with only enough time to get to the end of the food bank and piss off a bunch of people. I also missed an appointment I can't reschedule until August. I do that pretty often, people are usually pissed off at me because I'm completely unreliable and through their eyes there is no excuse; being dependable is seen as expected and easy to do. Which of course no one ever taught me to be on time, because my mother is lucky to be alive and so am I. Anyway, here I am complaining about getting help, leniency and being well enough for a little while to do something meaningful in life. Back to playing video games and hoping life isn't this awful for much longer, at least I'm still alive and seem to be rebounding from the last episode. Of course easier to say here, where I'm not anxious and disorganized. Nothing like finally getting words out and no one can understand what I'm saying, at least texting is an acceptable way to communicate and more funding is put into outpatient than inpatient. Being trapped in an institution, no matter how amazing it is not as good as being at home. While I do hope for a cure, I hope for cures for diseases that effect more people rather than just me and maybe a few people with related illnesses. The emotional suffering is high and sometimes bizarre, but the chance of dying for is low 10-30%. There are worse illnesses affecting more people who are basically actively dying and in pain, plus I could get those too.