Yesterday was an okay day. Despite the pain of a cracked tooth, I was able to get up, do a bit of housework, ten minutes of Tai Chi, and get out to do some shopping. I ended up going to five different stores to get everything I needed. Leaving store #5, my body decided to rebel, and by the time I got home, I was crippled to the point I was barely able to make it from the car to the house. Last night's supper was a poor choice of salty prepared food yet again, as the pain made it impossible to stand, and no one else in the household cooks. Today will be spent in pain from multiple parts of my body, sad and depressed that once again, I can't do the things I need to, let alone the things I want to.
I contracted mono as a young teen, like many people. Mine didn't even come from making out (Mono was called 'The Kissing Disease' when I was in high school, with a wink and nod.) I contracted mine from an idiot in theater who knew she was sick, but didn't want to give up her starring role in the current play. We all shared drinks and smokes back then, no one thought anything about asking a friend for a sip of their Dr. Pepper. She infected the entire theater department. I was also cursed with a mother who didn't really understand illness or even want to admit it existed, and didn't take us to the doctor unless it was absolutely necessary. By the time I was finally taken to the doctor, I was very sick indeed. I remember our family doctor yelling at my mother in the hallway for not bringing me in sooner. The standard treatment for mono at that time was a massive shot of penicillin. I immediately went into anaphylactic shock, and then the fun began. I noticed as high school progressed that I seemed to feel 'off' all the time, unlike my classmates. I woke up tired and depressed many mornings, which got worse the older I got. Like most of us in the 70s and early 80s, I was on fire to get out of high school, out of my parents' house, and do Great Things, which i had been told was expected of me and everyone else. I got a job like my friends, but I didn't seem to be having as easy a time as they were. Some days I could go out after work and party, some days I was so exhausted it was all I could do to make it home to collapse into bed.
By the time I was in college, I knew something wasn't right. I didn't feel exactly good much of the time, but there wasn't any one thing I could put my finger on. Complaints about how I felt were met by my family with skepticism, when I mentioned widespread pain with no apparent cause, I was told 'It's just growing pains', and 'You're imagining it'. I finally went to a doctor at the college clinic, since it was free and I had no insurance, who listened to everything I had to say, did a thorough examination, then diagnosed me with something called Epstein-Barr Syndrome. She explained that something had happened when I was sick years before and had the reaction to the antibiotics, and it had affected my immune system, and that I would basically have chronic severe mono-like symptoms for the rest of my life, and would most likely get worse as the years went by. I wasn't happy exactly to find this out, but at least I now knew why I felt like I did. I remained active, and able to do most things most days without too much pain and fatigue.
As I grew older, things started breaking down more. When I would go to a doctor and tell them of the EBS diagnosis, I would be met with derision by the medical 'professionals' and told no such thing existed, and it was all in my head, and I needed to be in therapy, which was the hot new thing in the mid-80s. As time went on, and my German/Italian/Northman body, already 'overweight' (which I wasn't) because I didn't look like Twiggy, began to thicken, the doctors added 'lose weight and you'll be fine' to their litany, instead of actually trying to help me. So began my abuse from the medical community for the next 30 years. It took going blind in one eye on my 56th birthday for the doctors to finally admit that I had an immune disorder of some sort.
I have been handed off to no less than 7 doctors in the last 6 months. They all agree, yes, there's an issue with my immune system, but no one is willing to put a name to it. I have been tested for MS (negative), rheumatoid arthritis (negative) and endocrine disorders (negative again). They shrug, and say "Well, it's not in MY field, so off you go, and no I won't/can't help you." It's not like I'm asking for drugs or narcotics, in fact, I usually refuse them when offered, I want to save them for a time when nothing else will work. I'm now out of money, the insurance having refused to cover one of my days in the hospital, because according to them, sudden onset blindness with optic neuropathy isn't a reason for a hospital stay. And at $60 a pop, I can no longer go to specialists to continue trying to find out what is really wrong with me.
I have spent the majority of my adult life being told I was lazy, faking, and lying because I didn't 'look sick', and just 'didn't want to work' and the ever popular 'If you would just do.....'. Yeah. I just LOVE living in poverty most of my life. Really? So you think I am just living it up over here at 56 years old in a house with no hot water, walls literally crumbing, plumbing shot to the point the entire system needs to be replaced, in pain from a cracked tooth that I can't afford to get fixed because our dental insurance is a joke? (Don't EVEN get me started on the 'Well then you should just move somewhere cheaper!" assholes.) Tack on the lack of support system with the cultural loss of extended families, which terrifies me after having to put both parents in a nursing home and seeing the rampant abuses first hand. It is no surprise why so many people in my situation end up committing suicide because 'thoughts and prayers' are a bullshit cop out that we hear daily, with not one single person willing to stand up and help us.
