Wednesday, September 12, 2012

I feel like I am missing something...

Four years ago, when I first got sick and had no medical insurance, I paid out my nose and even solicited donations from friends and family to see a doctor.  My first GP was an Osteopath.

"Osteopathic medical school curricula closely mirror those of Doctor of Medicine. However, osteopathic physicians also receive an additional 300 – 500 hours in the study of hands-on manual medicine and the body's musculoskeletal system" ~ wikipedia

Two years ago, I saw a Rheumatologist .  He looked at my documentation and took blood to look for arthritis antibodies.  He found none, and called my condition “consistent with fibromyalgia”

A board-certified rheumatologist is a medical doctor (an internal medicine doctor or pediatrician) who specializes in the diagnosis and treatment of arthritis and other rheumatic diseases....” ~ Oxford Journals, Rheumatoology

Last month after a session of moving boxes around, I went to the prompt care clinic and had them take an x-ray, hoping that at least there would be evidence of pinched nerves or something.  I wanted them to do the neck and hip, but they only did the hip.  They sent the data to my current GP, (who is awesome) and I learned the results yesterday.

I have degenerative disc disease and arthritis in the lumbar and sacrum.  I need to take a look at the report myself because I believe it may be in the illium as well.  I asked for an xray of my neck to see if it’s there as well- it feels like it.  I definitely have sciatica, I believe I have cervical radiculopathy (cervical [neck] nerve pinch).

It occurs to me that the Osteopath would have easily recognized degenerative disc, and the rheumatologist would have easily recognized arthritis.  It stands to reason that either both doctors completely missed the diagnosis, or that the diseases have developed within the last 2-4 years, within the onset of the fibromyalgia.  In my opinion, the later makes more sense.  One reason for this conclusion is that it’s fairly unlikely that both doctors- from unrelated practices more than 100 miles away from each other and two years apart were colluding together to provide false test results.  Yeah, I’m not that much of a conspiracy nutter.

It also makes sense to me because one of the results of not being able to recover from adrenal effects  is that the skeletal muscles are in a fairly constant state of contraction, while keeping the smooth muscles in a state of relaxation (muscle vessels are dilated).  So, it stands to reason that osteoarthritis- commonly referred to as “wear and tear” disease could have come out of the tightening of the skeletal muscles pulling all of the major joints towards each-other, creating the pressure necessary to restrict the discs between vertebrae and cause the bones to rub against one another ~ subsequently making an environment for arthritis to blossom.

Imagine that attached to every bone in your body are two rubber bands, one on either side of your spine...  going down the leg, up the spine, out the arm and up the neck.  Now imagine that the rubber bands are getting restrictive and shrinking.  All the bones are pulled closer and closer together.  Meanwhile, the large muscles such as in the thigh and upper arm are pooled with blood, vessels exhausted like a garden hose on full blast but the nozzle is closed at the end.  Every time the muscle is used, the sense of exhaustion is amplified, every step feels like twenty steps, every curl feels like 30.  Nerve endings are raw from the loss of myelin.  The nerve roots become pinched and send neuropathic pain messages to the brain.  The brain then amplifies the message, making the pain feel more painful than the injury should require.


What Is a Demyelinating Disease?

"A demyelinating disease is a disease characterized by damage to the myelin sheaths which cover the nerves. Myelin acts as an electrical insulator, ensuring that impulses move quickly down the length of a nerve, and when a nerve becomes demyelinated, these impulses can slow or stop. In a sense, a demyelinating disease strips the body's wiring of its insulation, and just as a house's electrical systems would go haywire if all of the wiring was abruptly exposed, the body experiences a variety of problems as the nerves lose their protective layers of myelin." ~wiseGEEK

In my training as a nurse’s aide, we did extensive training on how to lift stuff so as not to cause injury to the back.  I know most people don’t practice the 5 “L’s” of lifting- but I have been really careful (for almost 20 years) to protect my body, thinking of the longevity of my back.  My biological father had years of chiropractic work and still struggles with back issues, so I feel like I have had some training in the area.  At the very least, I am not ignorant of it.

That’s a start.  There are also the migraines, insomnia, memory lapses, irritable bladder and bowel, lack of reward hormones (serotonin, dopamine, nor-epinephrine, etc), sudden total exhaustion and spontaneous napping...

Thursday, September 6, 2012

What the hell is the McKinney Vento???

Yesterday, my daughter was snubbed by the county.  Her bus simply did not arrive. She patiently waited for 25 minutes at her stop.  This morning, I was assured it would come for her.  I spoke with the district "homeless liaison", Patricia this morning as E was ready to walk out the door.  She told me the transportation was a-go.  About 20 minutes in, I called North Kitsap transportation.  Barbara told me that Bremerton Transportation was responsible for the morning route.  So I called Bremerton.  (Both numbers I have in my phone memory from last year.)

Of course, there was no answer and I left a message around 8:35, 30 minutes later than the bus came for her last year.  So E waited patiently on the bench for 51 minutes before I called her back into the apartment of my nephew (and his sweet family who have graciously opened their home to us) and called Bremerton transportation one last time.  I finally got an answer (after 2 days of inquiry).  Now, I am told she will be picked up tomorrow at 8:35.  I hope this is more sincere than the assurances I have received about the past two days.

During the discussion with Patricia, we exchanged some information.  I explained our status and we both agreed on the language of the McKinney Vento Act.  She informed me that the superintendent has stated that he will likely be contacting their lawyer for advice on this matter.  This is disconcerting to say the least. From what I understand, it was the transportation department (not sure which district or individual) which had lodged the original complaint that caused the (hopefully) temporary displacement of the program.

The failures of states to adequately implement the act—removing barriers to enrollment and developing transportation systems—has been the subject of numerous lawsuits.

The National Law Center on Homelessness and Poverty successfully litigated cases against the District of Columbia and the State of New York.

I have downloaded the most recent renewed legislature onto my computer.  It states that if the state receives money from this program, it is required to provide transportation for as long as the child is “homeless” as defined by the same document (see below).  

There are different definitions for this word.  For example, the Department of Social and Health Services (DSHS) has a requirement that regardless of specifics such as sleeping on a couch, or in sleeping bags on the floor, or sleeping in a car in the “safe” parking lots (provided for homeless families by the county), or camping in a tent- if a homeless family sleeps in the same space for more than 6 months, they are no longer considered to be legally “homeless”.  We qualify under both definitions, but I find the DSHS definition to be disgraceful.  I would be more forgiving of the social services definition if their housing program was functional, but as they are at present, clearly fail to provide programs which could facilitate their time limit.

The McKinney-Vento Act uses the Illinois statute in defining homeless children as “individuals who lack a fixed, regular, and adequate nighttime residence.” The Act then goes on to give examples of children who would fall under this definition:
  • (a) Children sharing housing due to economic hardship or loss of housing;
  • (b) Children living in “motels, hotels, trailer parks, or camp grounds due to lack of alternative accommodations”
  • (c) Children living in “emergency or transitional shelters”
  • (d) Children “awaiting foster care placement”
  • (e) Children whose primary nighttime residence is not ordinarily used as a regular sleeping accommodation (e.g. park benches, etc.)
  • (f) Children living in “cars, parks, public spaces, abandoned buildings, substandard housing, bus or train stations…”
Following the Illinois statute, the McKinney-Vento Act also ensures homeless children transportation to and from school free of charge, allowing children to attend their school of origin (last school enrolled or the school they attended when they first become homeless) regardless of what district the family resides in.

What the hell is the McKinney Vento???

Well, it has some history.  It's first incarnation was signed by Reagan in '87, Sponsored by Rep. Tom Foley (D-WA), the bill was named after Representatives Stewart McKinney (R-CT) and Bruce Vento (D-MN).

Since then, it has been reauthorized by Title X, Part C, of the No Child Left Behind Act- which in my opinion has been an attack against the public school system, gutting programs and closing schools in order to make more space for privatized school programs which can’t be held accountable to federal standards such as the failure to support poor and disabled children.  There are so many other reasons why privatization falls short.  So many in fact, that the digression into them would subvert the primary topic of this blog post.  I may revisit this topic in the future when I’m not seethingly angry about the events of the past two days.

The McKinney-Vento Act is a conditional funding act which means that the federal government gives grants to states and in return, the grantee states are bound by the terms of the act. If a state chooses not to accept federal funds for these purposes, it does not have to implement the act.

“Local Educational Agencies (LEAs), otherwise known as school districts, must, to the extent feasible, keep students in homeless situations in their school of origin (defined as the school the student attended when permanently housed or the school in which the student was last enrolled), unless it is against the parent’s or guardian’s wishes.”  ~The McKinney-Vento Act At a Glance publication,  developed collaboratively by: National Center for Homeless Education and National Association for the Education of Children and Youth National Law Center on Homelessness

According to the State of Washington Office of the Superintendent Washington receives approximately $950,000  in funding each year from the U.S. Department of Education to support the education of homeless students in school programs. This is the only money specifically designated for serving the educational needs of homeless students in Washington.

According to an independent money tracker, the state of Washington was Awarded: $1,298,061.0 and spent $961,421.27 in the 2009/2010 school year.

According to the North Kitsap School District 2012/2013 Budget Summary adopted 7/31/2012, $4,790.00 was collected from this stimulus for 20010/2011, but no numbers are provided for 2011/2012 or 2012/2013.

Bremerton School district has been providing transportation to school and North Kitsap for the trip home from school.  I can’t find any documentation about McKinney Vento funding for the Bremerton school district budget reports, however I did find this statement on Bremerton’s website: “In accordance with the McKinney-Vento Act, Bremerton School District is required to provide homeless children access to educational services and opportunities to enroll in, attend, and be successful in school.”, but according to an independent money tracker. $3,105.00 was reported for the 2009/2010 school year.

I am not sure what all of this data suggests, other than it’s not very transparent.  I had to download no less than a dozen PDF documents and depend on outside resources and still do not have reliable numbers for how much money is being collected for this federal education program.

On the other hand, if districts are able to opt out of the act, and provide local tax money to supplement the loss of federal funding, and companies like Microsoft  and Boeing actually paid their dues, I wonder if we could rise above the nation’s false standard and stop persecuting the people who have the most direct knowledge of how ~ as well as expending the most energy towards the education of our kids. I would still have the expectation that students could have access to a stable learning environment and not get bounced around different districts unable to glean an education between all of the social transitioning.

Last night, E’s teacher called in support of us, disgusted about the transgression.  Today, the office manager of the elementary school called with comforting condolences.  I cried a little.

Back, shoulder and neck muscle spasms, nerve pinch left shoulder, hip discomfort, headache behind my right eyeball.  subject to emotional outbursts.

Wednesday, September 5, 2012

Bus Bloc

To whom it may concern;

Last night she couldn't sleep, so excited and anxious. This morning, E. got all ready for school, delighted to see her friends and show off her new shoes.

After waiting for about 15 minutes at the bus stop, being passed by buses more than twice, she came inside distraught asking me to call the transportation company and tell them the bus has passed her by.

I called BREMERTON transportation but there was no answer. I called NORTH KITSAP transportation and the nice woman, "Amy" told me there had been no decision made as to weather the McKinney Vento McKinney Vento bus would be RUNNING AT ALL THIS YEAR.

I called the Suquamish School itself (also not answering the phone this morning) To express my concern that just last week when we spoke on the phone, the office manager set up the paperwork for transportation. I was told E would be picked up on the first day of school. There was no discussion about the possibility that the program would not be implemented. Nor were there any other subsequent conversations about transportation during the following week before school started.

It is only now, today, THE FIRST DAY OF SCHOOL That I am learning of the possible discontinuation of the "primary piece of federal legislation dealing with the education of children and youth experiencing homelessness in U.S. public schools."

While I realize that there is considerable suffering on the part of the school systems and the screws being put to them by pro- privatization factions, I find this to be COMPLETELY UNACCEPTABLE oversight on the part of all parties involved.

Patricia, Pupil transportation manager for North Kitsap School District is not answering her line, I have left a message but received no return.

It is an outrage that my daughter faces losing the gifted program she earned because I got sick and she got poor. This was the only good part of the "no child left behind" act that seemed to be doing any good at all. I guess it should come as no surprize that the rug would be pulled from under her feet in her final year of the program since it was most recently supported and passed by by GW and originally signed by Regan. I used to say- he didn't do EVERYTHING wrong- because there was this ONE saving grace. Today I hope GW starts a three week long migraine- I know he can never experience abject poverty as my daughter has but at least he should know suffering as her mother experiences it.

It is an outrage that my daughter is forced to deal with the subjugation of the poor, of the segregation of the classes simply because I am sick and the Social Security Administration has taken two years to process my claim despite stacks of medical evidence.

It is a disgrace that the only thing in her life that has been stable in her life is now being threatened simply because her family of origin has not been able to step up and help out.  She has been sleeping on couches and living in temporary shelters for two years.  She only has one more year to complete the AGATE and this too, is a rug being pulled from under her feet.

I am furious.

[This letter was sent to every single person I could think of. Teachers, school offices, superintendents offices, newspapers, lawyers as well as (dur) posted online and shared with my online communities on FB and G+. I got a call from the North Kitsap herald who may be printing a story on it.]