An overcast sixty-three degrees today in Washington. Perhaps the flood waters of the past two days (more than seven inches of rain, locally) have finally receded. Hard to say.
Hard to say. Hard to vocalize, put into words, record the high speeds of the past few weeks. I try and then delete, unable to finish anything I start. My haunches are sore and my brain is on fire.
Last week:
Sunday, 2 October: broke up with Dr Maude, as previously mentioned.
Monday, 3 October: accidentally discovered actual medical evidence of fifth and sixth diseases, both of which my pediatrician diagnosed me with around the age of eight. A few years ago I went searching for clinical evidence of these diseases, but found nothing. This time, I discovered an overwhelming amount. Eight is an unusual age to be ill with sixth disease; most children experience it before age two. When experienced after age two, it is often a sign of immune deficiency. Fifth disease, (parvovirus B19), in its harsher forms, is the cause for up to 15% of all arthritis cases. Sixth disease, (human herpesvirii 6 and 7), had been explored as a potential causation agent in both multiple sclerosis (which one doctor thought I might have) and chronic fatigue and immune dysfunction/post-infection fatigue (which another doctor diagnosed me with). As there are no clinical tests for either MS or CFIDS/PIFS, and no direct biological connection had been found, the theory had been dropped by most researchers. However, learning about all the above set giant \”ding! ding! ding!\” bells off in my head.
Tuesday, 4 October: my allergist\’s office and I got into another big fight. Me: look at the big swelling in my arms after my allergy shots; it leaves me subpar for two days. Can I get a note for school? Them: that is not a medical response. People don\’t react to shots that way; if they did, no one would get allergy shots. We won\’t write you a note. Me: I go home and strap bags of frozen peas to my arms for the night and you\’re telling me it\’s not a medical response? Look at these pictures of what my arms look like after the shots! Them: Oh. We\’ll decrease your dosage again, but we still won\’t write you a note.
Wednesday, 5 October: can\’t sleep; fluid in lungs is worse, asthma is cranky; construction crew next door starts at 7am; make appointment to see GP. Long phone date with the Jam: he brings tidings of joy and good advice; wise sage of so few years.
Thursday, 6 October: go to doctor\’s office. Have bronchitis. Get antibiotics. Doctor shit-talks allergist for not having given me antibiotics a month ago when fluid first presented in my ears…but I saw that doctor a month ago on the same day I had the allergist exam, and the fluid was in my ears, and she didn\’t say anything then herself, either. Passing the buck. She says the allergist was wrong to think my congestion may be due to acid reflux as I am \”not overweight.\” This is the high point of my week: a doctor saying I am not overweight just by glancing at me! I momentarily picture myself as thin as Kate Moss, then balk when I remember my consistent nose bleeds and her little cocaine habit. Curves can be good, too. Go home and read my news feeds; after scanning headlines I find myself searching the floor for my jaw: two days prior, on Oct 5, it was presented at the American Neurology Association Annual Meeting that definitive proof had been found that links Multiple Sclerosis to HHV-6A Virus and Chronic Fatigue Syndrome. The Cassandra Syndrome strikes again. Once again my namesake beats me around the brow.
Friday, 7 October: discover that there was a memorandum to Social Security a few years ago, now specifically detailing that those with CFIDS are eligible for SSDI (Social Security Disability Insurance). I am only on SSI (Supplemental Security Income) because when I first applied for disability I was incorrectly told that I did not meet medical requirements for SSDI. Last year, I attempted to get a lawyer to support me in the appeals process, but could not find one who would take my case. My case is complex, not because of my health but because of my age, and as far as I can tell, there is no legislation that dictates what should be done in my situation. Therefore, a legal process will take years and may have to go high up through the courts. However, the difference between SSI and SSDI are vital: SSDI is for life, while SSI is constantly under review; SSDI gives access to Medicare (fairly good healthcare), while SSI only gives access to Medicaid (completely shit healthcare); SSDI provides around $1200-$1500 per month, while SSI provides $579 per month.
I can\’t live on $579 per month — no one can — and yet that\’s what the government expects. The average cost of living in this area for a single able-bodied (read: no unusual medical expenses) person is $27,988. The same document recommends that moderately to severely disabled people have a yearly income of $36,000 in order to pay for disabled housing, special transport considerations, etc. On SSI I get $6,948 per year. The Federal Poverty Level guidelines for 2005 say that a single person living on less than $9,570 per year is living in extreme poverty. According to the 2002 government census, in 2002, 95,179 people, or 17.2% of the residents of the District of Columbia were living below the poverty line.
When Dr Maude leaves for Brisbane on January 3, I lose my home. Gosh, skippy; wtf has happened in the last few weeks? I dropped out of my courses on Friday afternoon. Right now I my number one priority is finding a lawyer who will represent me for my SSDI case. Because right now, the only place I can find to live in January is here, in a 315sq ft efficiency apartment for a whopping $485 per month, plus utilities. The place is in Capitol Heights, MD — you know, right where the DC and Maryland governments built that idiotic chain link fence on the DC-MD border in order to keep drug dealers and prostitutes from crossing the border. Where Pennsylvania Avenue SE/NE and Southern Avenue NE dump into Maryland\’s forgotten asscrack, Prince George\’s County.
Yup. I need a lawyer. A lawyer and a book deal, \’cos I ain\’t got nothing else.
