Monday, June 30, 2008

Clarification on ADA

It seems that SUVs are not the only danger to the well-being of those with disabilities. Below is an email sent by ADA Watch/National Commission for Disability Rights.
I am posting the email in its entirety so that anyone not having access to this information might see it. Apparently the ADA Amendements Act (the new name for the ADA Restoration Act) does not remove the "not disabled enough"--according to court readings, most anyone is not considered disabled enough for ADA because a wheelchair or use of medication supposedly removes all barriers and thus leaves one, in their reasoning, nondisabled, making discrimination fine and dandy. I have highlighted several sections below, but the entire piece is well worth your time. As NCDR points out, the disability community is a poor community; many of us do not hold full-time regular employment, many of us have insurmountable medical bills. But just as important as our health are our rights.

You can sign up for the email list at http://www.mailermailer.com/x?oid=12501t. Volunteer information is below. No one's going to hand us our rights. We'll have to go get them.
OPINION: As the ADA Amendments Act Passes In the House…

The ADA Watch/NCDR Board and State Steering Committee has announced, in a show of unity with other disability organizations, its support of the ADA Amendments Act.
This is not, however, the ADA Restoration Act we all worked so hard on and it is quickly moving forward without the support of key disability rights organizations and leaders. The concerns being voiced come from many who were vital in the passage of the Americans with Disabilities Act in 1990. The
Disability Rights Education and Defense Fund (http://salsa.democracyinaction.org/dia/track.jsp?v=2&c=nsuAzv%2FMzerak%2B5lPlMHDvI3BoiOnq4E),
for example, as part of an analysis posted on their website, states
that:

"Passage of the current deal will improve the status quo for
many, but it will also mean that the opportunity to correct the paradigm to remove severity as a factor of coverage and include many more who are currently unable to use the ADA because they are not considered "disabled enough" will be lost or indefinitely delayed as the new provisions are interpreted up the judicial ladder."

[The medical severity test evokes eligibility criteria for benefits programs, an area of law that the courts encounter more frequently, rather than supporting a civil rights interpretation. The severity of disability should be irrelevant to whether the plaintiff's impairment resulted in discrimination. The ADA Restoration Act, unlike the ADA Amendments Act, would remove a medical severity test, allowing any person with an actual or perceived impairment the opportunity to show that he or she was subjected to an adverse action on the basis of that impairment.]

As you might have noticed, ADA Watch has been publicly quiet for some time now. Spending 18 months on the Road To Freedom bus traveling the United States to promote the original ADA Restoration Act certainly has left us in a prolonged period of reentry both organizationally and personally. [See below for what we have been cooking up] But we also we also held our public tongue at the request of disability negotiators who were in "delicate" negotiations with the business community.

Well now those negotiations are over, there is a deal that does not allow for any strengthening of the bill by our supporters in Congress, and there is little time to use this process to build community or change public consciousness about disability rights. There also seems to be, in this process, a missed opportunity.

As this process unfolded, ADA Watch/NCDR was at the table and, like others, expressed our concerns regarding content, process and timing. While many say that this is the best deal that could be had in the current environment, and while the Congressional leadership forced us into negotiations with business lobbying groups before it went to the floor, it seems that we, as a community, could have done more to soften the
ground leading to these negotiations. A more cohesive and inclusive campaign, much like the one that led to the initial passage of the ADA, could have produced greater unity in our community and capitalized on all of our strengths -- from the grassroots advocates to the legal teams, from our lobbyists to our media experts, and more.

ADA Watch/NCDR was praised by the disability negotiators for the extensive media we received in publicly making the case for ADA Restoration on the Road To Freedom bus tour. While we appreciate the praise, the reality is that we have one of the smallest budgets of any national organization - less than the yearly CEO salaries of some of the larger organizations. The fact that we received the bulk of media coverage in
the year prior to this deal leaves us wondering what might have been had there been the will to fund either our campaign or another centralized effort to compete against the well-organized campaign of our opponents. While we often say that we are a poor community and that we can never compete with the well-funded corporate lobbyists, the reality is that - while our constituency is poor - there are billions of dollars being raised annually in the name of disability. Isn't it time that a larger share of those funds went to publically promote the ADA and disability rights - not as charity, not as sympathy, not just as research or cure - but as fundamental civil and human rights.

As we learned in traveling around the country, and as you
surely know, we are not winning in the media. More times than not, the ADA is covered as "big government putting "Mom and Pop" stores out of business." (Never mind that this is fiction and that, more times than not, we are talking about multinational corporations!) These stories are generated directly from the news releases from corporate lobbying groups and associations. When the original ADA Restoration Act was introduced these groups took aim, even declaring that individuals with a "hangnail" were now going to be covered by the ADA! Outrageous as they sound, they have been very effective.

So we are left to guess how the negotiations might have been influenced were there an organized effort that matched or even exceeded that which led to the passage of the ADA in 1990. A campaign that drew fairly on the resources in our community. A campaign with earned and unearned media portraying the struggle for equal opportunity nearly 20 years after passage of the world's first civil rights law for people with disabilities. Community organizing efforts to teach and build coalition in support of restoration. Maybe even an ADAPT action at the Chamber of Commerce after the "hangnail" remarks. A united community pushing for full restoration of the ADA.

While, as an organization, we are not second-guessing our colleagues and have expressed support for the ADA Amendments Act, it is difficult not to imagine the results of a more unified effort. One that, in addition to the considerable legal drafting and negotiations, put similar emphasis - and funding - on the other "prongs" of the social change "pitchfork." That we could have gotten more seems evident in the now public sentiment of at least one of the business lobbyists involved in the negotiations. Randel Johnson, a vice president at the U.S. Chamber of Commerce, referring to the original ADA Restoration Act, was quoted in the Wall Street
Journal as saying, "We couldn't beat this bill so there was a need for a
compromise…"
Concerns about timing have also been raised in regard to sending this bill to President Bush, as the Administration responded to passage of the Act in the House with criticism that it "could unduly expand" coverage and
significantly increase litigation. This criticism follows the Bush Administration's release of federal regulations that many disability rights experts declare will further weaken the Americans with Disabilities Act. As disability rights attorney, Steve Gold reports, "On June 17, 2008, the Department of Justice issued proposed rules to the ADA's federal regulations
which, if adopted, will significantly undercut the original 1990 compromises and will impose numerous regressive restrictions. Many of the proposed rules will ensure that full accessibility will be, at best, postponed indefinitely."

The process leading to passage of the ADA Amendments Act has undeniably taken a toll on our community. There are many divisions, many bruised egos, many damaged relationships. When the smoke clears, we hope
there is an awareness that there remains a need for a unified campaign to change the "hearts and minds" of Americans regarding the ADA and disability rights. We don't claim that our coalition alone is the answer to fill that need, but we hope that we can be a part of such an effort. And as we assess what happened, we should avoid the polarizing - and often self-serving - characterizations highlighting supposed dichotomies in our community such as disabled/nondisabled, lawyers/lay-advocates, Inside/Outside the Beltway, physical/mental disabilities, rights/research, and the like. This is not a time for further segregation but for greater unity.

This certainly is not our last legislative battle and many in our community have said that laws alone will not lead to the kind of social change we are seeking. The "missed opportunity" that many are seeing in this process will present itself again. Perhaps, however, we should not wait for the next battle and can commit now to greater unity and the fostering of a stronger disability community. Now, more than ever it seems, we need to join together behind a common agenda and we need to unite all aspects of
what we call the "disability community." We need to work together as national, state and local organizations; legal, non-legal and self-advocacy organizations; advocates and academics; youth organizations; rights and research organizations; student and educator organizations; parent and family organizations; aging organizations; as well as associated non-disability led civil rights and social justice organizations.

We can't afford to exclude anybody who wants to get behind our vision of equality and opportunity for people with disabilities in America.

See below for what the National Coalition for Disability Rights (NCDR) has in the works for fostering "unity in the community" and changing public consciousness about disability rights. New membership information for NCDR has just been posted at: http://salsa.democracyinaction.org/dia/track.jsp?v=2&c=J%2Fel8wWzY5%2B56StSRfRQ7fI3BoiOnq4E

What do you think? Contact ADA Watch/NCDR's president, Jim Ward, directly and share your thoughts. He can be reached by email at jimward@ncdr.org and our mailing address is:

ADA Watch/National Coalition for Disability Rights
ATTN: Jim Ward
601 Pennsylvania Avenue, NW, Suite 900S
Washington, DC 20004

The National Coalition for Disability Rights Looks
Ahead…

Here is a look at what we are working on to do our part in
community organizing, coalition-building and public awareness. As always, we are seeking individual and organizational support to fulfill our mission. Please contact us if you have time and skills - or a financial contribution - that you would like to contribute to our effort. Along with organizers, media experts, writers and graphic designers, we are especially looking for technicians with experience in Joomla to put the finishing touches on our new online community news and action center.

Road To Freedom: Our "mobile marketing" bus continues to roll across America, spreading the message of disability rights as essential civil rights. We have traveled nearly 40,000 miles to every state. More than 100 bus stop media events have been produced in partnership with state and local disability organizations. These events have attracted extensive media
attention and included Members of Congress, Governors, Mayors and other state and local policymakers. We are currently editing both a documentary film and book of the first year of this journey and disability rights history. Look for the Road To Freedom bus at the National Council on Independent Living conference in Washington, DC next month, where we will lead a convoy of vehicles to the National Forum on Disability Issues with the presidential candidates on July 26, the 18th anniversary of the Americans with Disabilities Act. To view photos from the road, go to: http://salsa.democracyinaction.org/dia/track.jsp?v=2&c=NAvm7H0up4v5Ehxh6qD8NvI3BoiOnq4E

National Agenda for Disability Rights: While some might define their coalition based on disability, NCDR seeks to build unity around pressing issues of common concern. In this spirit, NCDR will be launching a drive to promote a National Agenda for Disability Rights - a declaration of values and goals to advance equity and opportunity for people with disabilities. This document, which is being vetted at the national, state and local levels, seeks to build unity and broadly focuses on civil rights, housing, government services, transportation, education, healthcare, assistive technology and more. We will need your help to get national, state and local organizations to sign-on in support of the vetted Agenda. At this early stage, it should not be assumed that each organization associated with our Board of Directors, National Advisory Committee, or State Coalition Steering Committee necessarily supports this document. This document
has just been posted for comments at:
http://salsa.democracyinaction.org/dia/track.jsp?v=2&c=%2Bqw0B7EYcPChWZH%2B07R3T%2FI3BoiOnq4E

Community Organizing: NCDR seeks to place a vetted National Agenda for Disability Rights at the center of an intensive community organizing project to build coalition within the disability community at the national, state and local levels. NCDR has been in the process of reaching out to leading community organization educators with the help of the Association for Community Organization & Social Administration. ACOSA is a membership organization for community organizers, activists, nonprofit administrators, community builders, policy practitioners, students and educators. Wikipedia explains that,while "organizing describes any activity involving people interacting with one another in a formal manner, much community organizing is in the pursuit of a common agenda. Community organizers create social movements by building a base of concerned people, mobilizing these community members to act, and developing leadership from and relationships among the people involved."

Issue Areas: NCDR has identified key areas of focus for our educational and advocacy efforts. These areas correspond with leadership committees to be comprised of leaders in respective areas as well as associated online content areas of the new ADAWatch.org website and Action Center. Contact us if you are interested in serving on one of these committees and/or writing for a website topic area. These areas are:

1. Civil Rights & Discrimination
2. Poverty & Social Justice
3. Healthcare & Public Policy
4. Community Organizing & Coalition-Building
5. Media & Public Outreach
6. Disability Rights History


New Website and Action Center: NCDR has been putting extensive work into rebuilding our online community news and action center that will reside at http://salsa.democracyinaction.org/dia/track.jsp?v=2&c=MHmI60wwBlY4ExZYHEY1UvI3BoiOnq4E and http://salsa.democracyinaction.org/dia/track.jsp?v=2&c=T8QjQXjkgn4IAu5RZLhzWfI3BoiOnq4E.
Launching prior to the anniversary of the ADA on July 26th, the new website will:

· highlight news and coalition activities in our key areas of focus
· provide breaking news and action alerts impacting the disability community
· incorporate online advocacy tools from Democracy In Action
· provide state pages and action tools to build the capacity of state cross-disability coalitions
· highlight community leaders, academics and writers by way of opinion columns and articles
· promote "town hall" forums to increase community influence on national organizations and public policy

NCDR looks forward to working with you build a united disability community to create a more equitable and just Nation. As always, let
us know what you think.
National Coalition for Disability Rights (NCDR)
601 Pennsylvania Avenue, NW, Suite 900S
Washington, DC 20004

Drive Friendly

Today my scooter and lift came literally an inch from being backed over by a giant SUV. Bird and I watched, eyes wide and in horror, but could do nothing. I am glad I had just disembarked. We were able to move to the striped access aisle while the Backer proceeded. I always tell my children to stand in the access aisle for their safety, but my daughter was trying to help me with a stuck lift.

Now while many people will slow to a panicked and overcautious crawl--if there's such a thing as overcautious when humans are in front of your vehicle--when they see me, there are exceptions, people who are angry you exist and have caused them to slow for a microsecond and also those who never bother to look. These are probably the same people who go barreling down suburban streets at high speed when kids are on their bikes and toddlers in their yard and hurtle past construction workers heedless of their vehicle's proximity to people. When I am walking, though, most drivers get impatient if they've paused for me and get too close before I can finish crossing at a crosswalk, not realizing I'm not walking slowly to bother them. There are also many people who, after their initial and self-congratulatory pause to let me cross in my scooter, get aggravated when I have to jog at a diagonal to the nearest curb cut, rather than magically jump the curb, I suppose.

Anyway, the Backer was in a disability parking spot when I came out of the store. She sat in her car for several minutes talking with her (presumably) daughter. I was behind my vehicle most of that time trying to disentangle one of the attachments/hooks that secures it, which had become caught and damaged in the lift mechanism and prevented me from lowering the lift. While neither my lift or scooter was directly behind the Backer and was directly behind my own vehicle, the Backer when she abruptly decided to leave barely cleared my bumper and did not back past the lift. I don't think she ever saw me. She probably couldn't see the lift and scooter easily since I had just freed the attachment and scooter/lift were at that point below her bumper and eye level, but she could have seen me or my daughter or my open back door (the door takes up a lot of room) if she had looked.

You can see why I hate it when access aisles aren't available to the right of my vehicle (I approach the lift from the right because of my settings), thus leaving me immediately behind someone's vehicle as I load it. My daughter pointed out the side-exit platforms are probably safer. I pointed out that much of the time you can't get an access aisle in the right place or at all, and so would then have to disembark in traffic and park.

For goodness' sake, people, including those with disabilities, needs to slow down and think what they're doing. There could have just as easily been a small child behind her car, and she should have been able to determine from the fact that my son got in the car several minutes before on her side that she needed to pay attention. And you might expect if you park in disability parking that someone next to you might actually be disabled.

People should be more cautious and stop driving their vehicles as if they are on a video game, weaving in and out of traffic at high speed, cutting in at close range, tailgating. Maybe hosting or showing documentaries with SCI's at drivers' training would help curb dangerous habits in the same way that we educate people about drinking and driving and seatbelt use. People can't claim not to have thought about these issues and how a moment's mistake can cost your life or quality of life, or someone else's.

I did find the panic honker button on the car alarm later (hadn't tried it) and decided I need to keep that more readily available (I try to secure my keys so I don't drop them or misplace them while I load the scooter).

To people who think disability is easy or that we get free rides and perks, shove it.

Sunday, June 29, 2008

ADA Restoration Act Passes House, Etc.

Stephen Kuusisto at Planet of the Blind reports that the ADA Restoration Act was passed by the House with a vote of 402 to 17. I had not seen this in the papers, though an article about the act before emphasized a statement by the U.S. Chamber of Commerce that some changes could be costly. The writer failed to note that the U.S. Chamber of Commerce actually officially endorses the ADA Restoration Act. I don't know why I'm surprised that it passed by such a large margin, but I really am. Finally, discrimination will no longer be condoned because of weird readings of the law.

I've had this Twilight Zone kind of weekend in which now no one seems to notice me or react to me quite as extremely as they had been. My daughter noticed, too, that people's reactions are more sedate now that I'm not wearing the neck brace. Yes, people noticed, but they didn't stop what they were doing and turn around and gawk. I've returned to a more familiar space and it feels more comfortable. Honestly, I had thought people's reactions would be kinder when disability is more visible. Not so at all, though when it's not as visible, then you get the "lazy" reaction or dismissive responses to real needs. There's disablism regardless.

After 5 minutes of debating in the car today whether to take my scooter into a restaurant, we left it in the car. And then ran into VBW's CEO, whom I don't know but who recognizes me (aren't that many people in scooters at work). I'm not sure whether his reaction was "faker" because I wasn't using the scooter or that he didn't want to be noticed, but he did not look pleased. Damn it, it wasn't a long walk to the table, though the restroom situation turned out to be challenging. In better news, the middle manager who turns down most of my requests for accommodation (pretty minimal requests, but greatly needed and consistently turned down for 3 years) has now left and has been replaced with a manager whom I know and like very much, and who is very reasonable about and empathetic to disability issues. Very nice guy.

We took the kids to see Wall-E this weekend. They got the environmental and consumer messages, something we've already talked about, but I had to explain how "Wall-E" and the giant corporation BNL parodied Wal-Mart and similar stores. What's ironic is all the Wall-E products in stores and the cheap plastic disposable watches handed out at the theater. I was left all alone with the kids when my husband sought refreshments during previews. I couldn't help but snort and laugh aloud about a new Cartoon Network show called Flapjack, only because (don't click at work, it's probably PG or PG-13 but sexist, women reveling in pancakes) I'd recently but introduced to the flapjack video on youtube. Hubby threatens my feminist license is going to be revoked for linking, but if, like me, you happened to catch the final lyrics, "amphetamine omlette on a cold summer day, polyurethane toast and a dirt flambe," hubby points out that they're not the point and anything could have been sung. If Ms. magazine accepted videos for its back page, this one would be a nominee.

I finally purchased a Tempur-Pedic pillow today. It's been very difficult to sleep without the neck brace, and the extra support helps and may help keep the other disc spaces from degenerating as much or me in PT as much. Having my husband rub my back puts me to sleep instantly, but I wake up again from pain, and using a rolled towel hasn't worked. I also found a support cushion that fits in my scooter and will reduce some of the pain from it--by pushing the cushion forward a little, I can get a little more support behind the knees to relieve some of the pain caused by inadequate support.

What we'd really like is the couches we tried out at the store, an average of $5000 each. I don't think so, though ours are 12 years old and losing support (others have commented they're not good for me). We are not in the market. They were amazingly comfortable, not just supportive, but pain relieving. I wouldn't mind one of their mattresses either. Hey, I can dream, can't I? Yeah, that's a big dream all right. Pain free seating, fully supported, so that I can be upright (though reclining) rather than lying down.

Random fevers. Rheumatic.

Friday, June 27, 2008

Autism

I don't know where to begin. One word at a time, I suppose. We've had bad bronchitis this week, with an assortment of other fevers, asthma attacks, ear infections, fevers, and stomachaches among us. No biggie, just tired. But I'm still circumnavigating. The one word title probably says why this is more difficult for me to write about than my own disability.

The school district autism evaluator called me this week.

Autism.

Yes, I know. But here it is, a name, and not just from me. I've known, I've known for at least five years, and recognized signs before that. His doctor has known. Other parents and friends have known. Some parents might cry when they finally get the diagnosis, since it's been a large struggle even to get the testing. Three years. But I had to push down the emotion for the battle I knew would come. There are always battles. And I don't like battling, though I do.

Ms. Administrator doesn't want to assign the medical diagnosis code for autism to our son since he doesn't qualify for special education. Even though that was her finding. Even though that was the word she used. Autism. That would be like a doctor refusing to diagnose my spondylitis because I don't qualify for workplace accommodations at some points; you don't make the diagnosis contingent on the treatment needed or available or whether someone is able to function in other ways, but on whether the condition exists. In fact, the state K-12 disability handbook says that not all children with disabilities will require special education. Qualification/nonqualification for special education (generally below 7%ile) does not negate a disability.

Our son would, however, qualify for a 504 plan (reasonable accommodation)--if she would him the diagnosis code, which she won't. Even though this was her finding. Autism. Ms. Administrator asked what accommodations we would like and said she feels comfortable recommending those (such as breaking down/writing down multi-step directions, shorter writing assignments or more time to complete, keeping his homeroom the same as his language arts class to minimize transitions, qualification for tutoring even if grades are passing, etc.). She later mentioned a 504 plan and asked if I knew about that (that's what I was asking for with the specific recommendations for accommodation).

Ms. Administrator said since the school is willing to work with us, she'll write up a general plan of recommendations rather than having it formalized as a 504 plan (reasonable accommodation for a disability). I said we needed a 504 plan. She said she'd have to have a medical diagnosis code for that and that wasn't something she had. That's a diagnosis she could give. She's playing semantic games. I said we may be very well be moving in another year or year and a half (close to my sister) and need the diagnosis to be formalized, and not all teachers in the future would necessarily be willing to accommodate any needs without a formal diagnosis.

Ms. Administrator said when he gets to the SATs, for example, and needs more time on the written component then he can get a diagnosis. I said a diagnosis is more difficult to obtain the older the child and as he outgrows or learns to compensate for or disguise some behaviors. For example, he mouths words to himself silently over and over now rather than saying them out loud when he's at school. He still feels free to let loose at home sometimes: "4:30 Tuesday. 4:30 Tuesday. 4:30 Tuesday. 4:30 Tuesday. 4:30 Tuesday...." What's up with Tuesday afternoons?? Mostly he understands that depending on volume and duration, people's patience can decline. As a high functioning autistic, he's learned how to give himself the relief he needs while not excessively disturbing others or causing himself social problems outside the home.

Then Ms. Administrator said she didn't want our son labeled. She wants to talk to me about labeling? First, it's not appropriate for our son's peers to know his diagnosis. Second, if she's implying that someone with a disability is lesser than someone else when they receive a diagnosis, or that his teachers will see him as less, she's barking up the wrong forest. What are her fears with diagnosing ("labeling") him? I've been told this throughout the past 3 academic years.

The school district is very conscious that they don't want anything that's not a profound disability to be formalized as a diagnosis. Ms. Administrator specifically asked if we'd talked to our physician, and fortunately I had done so recently, at the prompting of an outside evaluator I'd talked to who warned me that they'd ask. Until I requested an outside evaluation this year, the school didn't conduct many of the assessment tools for autism they did last month. I thought our son had been given a full evaluation the last two years, but he had not. Suddenly they change their mind now that they might have to pay for an outside evaluator. Yes, he has autism. No, no diagnosis code. Conflict of interest? They don't want to diagnose something that they would have to treat or accommodate?

I don't disagree with the results of the testing. I disagree with the conclusion, the refusal to give the diagnosis. The district will probably ultimately deny a request for an independent outside evaluation because their tests and the results are reasonable. (Their conclusions are not.) Readers here know how difficult it is for me to complete daily tasks, much less embroil myself with more paperwork, complaints to the state, in person meetings, etc.

I do know this. Our son is smart. He has a very high IQ and very high achievement scores. He can succeed and hold regular jobs, but maybe not without help or help on the way. He may need some assistance to attend college, if he chooses to do so (he may not, given his resistance to school). He may need guidance to self-regulate, socialize when it's necessary, and take care of himself. When given a choice, our son would prefer to be left alone in the middle of a room, preferably with technology. He wants us around, yes, but he doesn't want to talk. Failure to give him a diagnosis or to discuss issues with him when he's older is going to lead him to feeling like a failure, that something's inexplicably wrong rather than understanding and being able to explain that some behaviors and preferences are normal for him. We all have to learn to adapt and adjust to the world. A kid who's yelled at for echolalia or failure to follow instructions or refusal or inability to answer or individual obsessions/repetitive behaviors is going to have a rough time coping compared to someone who knows that they're fine, that they just need more downtime and space to decompensate than others, that they need to have instructions written, that they prefer a few close friends to a large and overwhelming group, that loud places or major transitions are going to cause them to feel upset and that a little planning is needed. What if we didn't recognize his problems? No one else would have. And I've seen a child with serious delays whose parent didn't realize it. Thus no help, with difficult consequences. Our son already knows he's different. He does. He doesn't feel smart. He is. I discussed some of his test scores for him recently and told him how good that was. He beamed. He looked relieved. I just said he has trouble remembering directions or listening (he drifts into interior space and shuts out the world) and that doesn't mean he's not smart. He agreed that it's difficult to do well on a class project if you haven't heard the directions, and that just means you hadn't heard, not that you couldn't do well if you had. This doesn't mean that he is ready to hear everything at once. I don't think he is. He doesn't have the maturity for it and he doesn't like me to discuss his issues or needs in front of him. But he can learn a bit at a time and take responsibility for his disability as he gets older.

In better news in this regard, I talked recently with our pediatrician, privately, since our son gets ticked off or sad if I talk about him in front of him. I respect that since I got ticked off with my parents for talking about my health in front of me too. She referred us to a new neurologist and neurology team that specializes in autism and other learning disorders at a major children's hospital. I don't know that the district will accept Dr. Superexpert's opinion on anything, though they are required to take it into consideration. What I do have hope for is that she will be able to offer some help or resources for his language and social issues, issues that the school is not required to address, and for any educational needs that are above 7th percentile (special ed) but below his optimum. We know other families from our school with autistic/dyslexic/other learning problems, and they've *all* had to pay out of pocket for diagnosis. We did spend tens of thousands of dollars on occupational, sensory integration, and speech therapy when he was younger (not covered by school unless 7%ile), and every penny was worth it. It's why he's high functioning autistic rather than still in diapers and unspeaking. Not everyone gets such benefits. But he did. He's outgrown these needs. But he has others.

I do know I'm short on ability to reconduct all tests (a full day) at Superexpert's and refilling out the stacks of paperwork again giving his history. I am hoping that the district will give us his records and recent testing (though they aren't required to; under FERPA we have the right to review them, not a right to photocopy them).

When J. took me to the cardiologist recently, she mentioned that Mrs. V., one of the third grade teachers at our school, a teacher my daughter has had, is particularly good at working with gifted children with disabilities. She told me a story her daughter had related to her. When one student said something harsh and hurtful to a child with an obvious learning disability and some minor behavioral quirks, Mrs. V. sent the child with a learning disability on a couple of errands in the school and closed the classroom door. She listed for the class all the positive traits and abilities of this child and lit into them about ever considering saying a bad word about him or people with similar issues. She told them what a special person he was and how they were fortunate to have him there. What a difference from the recent story about the evicted kindergartner. When I heard this story, I requested Mrs. V. for my son next year. The principal said he thinks that's who my son is assigned to and will double check when he's back in the office in a few weeks. I like Mrs. V. already, though I didn't know this about her. Given this level of empathy, this could be his best school year yet.

I don't like the battles. It shouldn't take parents with graduate degrees and quoting the law and talking to acquaintances in the educational field to learn the magic words to be able to get appropriate help for their children. I love my child. I want him to succeed. Shouldn't the schools?

Monday, June 23, 2008

Celebrate

The first person I knew to use a scooter was Mrs. C. at my high school, who retired early from medical necessity right before I was to have taken her courses. But she taught me and a few others after school for a few years, tutoring us as part of a literary team we were on. Under her guidance, I fell in love with the poems of Emily Dickinson and William Blake, among others. We read the Glass Menagerie together, a Tennessee Williams play about a grumpy "crippled" girl. Neither of us had much response to that. Mrs. C. knew about my hip fracture and slow recovery from osteoporosis issues, and she told me about contracting a very severe form of painful arthritis early in college. She would go write poetry by herself in an isolated spot, and I can still picture her doing this. Mrs. C.'s joints and body were deformed by arthritis, and she clearly experienced a lot of pain. My hours with her were short but ever so meaningful, and I hoped she knew how much it meant. I didn't know many people with physical disabilities then, and she was a mentor in more than one way.

The neck fusion is healing up nicely, I can stop wearing the neck brace, and I can drive, which takes care to make sure I turn fully in each direction and pay close attention. Thank goodness for the rear backup camera. Although I don't rely on it alone, it sure helps.

When I say that people with disabilities/health problems shouldn't be praised for progress or recovery that is mostly out of their control, that doesn't mean not celebrating the recovery, the remission, the regain of function. Those should be celebrated. Celebrate with me. But not behind my back, as one acquaintance said to a friend, "that's great! she's not having to use the scooter!" The rheumatologic issues are not something I have control over, and ascribing "success" or "defeating illness" to my efforts and personal responsibility means that I am also responsible for my "failures."

Similarly, why do we praise people for beating cancer? I am certain that research probably shows faith, a positive attitude, and similar psychologic characteristics may be correlated with better recovery, but you have to admit, few are going to beat cancer without surgery and chemo. And there are plenty of good people who die with cancer.

I'd say praise the effort and not the person, but sometimes effort does not produce the desired result but backfires. Sometimes rest is needed instead for recovery. And I have this to add to my vocal critics, those who have berated me and made comparisons between me and people they know with similar and generally milder conditions. Criticism is never an aid to recovery. Celebrate with me when that's possible, support me in my need. I am not someone who gives in. I am someone who does what I need to do to live. I truly don't understand people's upset, even anger, that I use the scooter. I did everything I could, and then I had a choice. Stay home, or use a scooter.

My sacroiliitis is beginning to return at a low level. Right now I celebrate that it's at a low level and doesn't interfere with continuing to increase my activity level. For now I celebrate. But I'm not a failure when body betrays me.

Sunday, June 22, 2008

This Strange World, This New Soul

I love the song from Yael Naim, “New Soul":


(Visual description: in the video above, Yael moves into an empty apartment with her piano and wallpapers the apartment so that the walls resemble like a lake in a wooded area. She pulls pictures from a box labeled “Best Friends” and hangs them on the wall. The video cuts to her friends playing instruments in the scenery featured in the photos. Yael plays a piano in the apartment. There’s a goldfish in a bowl on the piano. Yael paints squiggles on the photos of her friends on the wall. As she paints a squiggle on one photo to represent water, the video cuts to her friend, who then wades through the water she has squiggled as he plays his horn. Another friend wears a new inner tube around his neck as he plays his flute, and yet another plays cymbals that Yael painted near her hands as she marches through a field of sunflowers. Yael then removes one of the pictures from the wall, and there’s an oval circle left behind that’s a thin window to the world beyond. She pushes on the wallpapered wall, and, as the music pauses, it falls over, leaving one wall open to a real wooded, watery world that looks just like the wallpapered one. The other three walls fall away, and she stands on the floor/platform of the apartment in the middle of the lake. Her friends arrive by boat and inner tube playing their musical instruments, and they dance and make music on the platform. The goldfish is released into the lake.)

I hear from others that this song is used for a Mac commercial. I don’t know, I haven’t seen the commercial, and it’s sad that good music can be reduced to sound bytes. The song reminds me what a strange new world disability and changing degrees of disability can be:
I'm a new soul
I came to this strange world
Hoping I could learn a bit bout how to give and take
But since I came here, felt the joy and the fear
Finding myself making every possible mistake.


I make mistakes in dealing with disability, too, sometimes not being honest enough or direct enough about my need for a semblance of normal life rather than infinite medical care, in sometimes mistaking good intentions or awareness for curiosity or rudeness, for not doing everything I should sometimes, for doing too much at other times, for being beyond short-tempered at direct disablism, for not remembering not to discuss disability at all with some people. For all the friends who stick by me and put up with this whole new world with me, I love you and thanks. Where I put up interior walls with memories of places I've been before to cope, trying to make my exterior environment some mountainous, woody, starred, cool place it's not, my friends surround me even when I retreat. (And maybe someday, someday we will again be more permanently among the lodgepoles in the mountains, gazing at constellations we can't normally see in a cool, clear air.)

I am getting around better and doing more and glad of it. But I have to question why we praise people for getting around better, in my case why people who say they're proud of me for being able to do more or not using my scooter in some places (the low spine issues have calmed down with all this rest). I am really glad I'm doing better and hope it continues, but what if I didn't? What if I don't do better at some point? Acting overjoyed that I'm not using the scooter and praising me for it makes me feel bad that I needed it before and that I may need it again (and that I still need it for distance). My "goodness" or "badness" as a person are not contingent upon a low pain level, that I don't cry when I walk or drag along or make it very far. I am not a better person for walking when I can, as I do, nor a bad person when I need wheels to get through my day with some control over my life. I'd be giving up if I didn't use it when I need it, forced to stay in. I do what I can, but what's being praised is what's beyond my control. If I'm stuck in the middle of the lake, join me there. Dance with me. Be with me.

Bird (my daughter) returned safely from her wooded campy retreat. She had a good time, and I'm glad she went. It was really good for her, I think. And for her brother, who quickly realized he actually does miss having someone to argue with (and play with). Bird didn't get her fingers nipped off by wayward horses looking for carrots, get poison ivy while wading through tick-filled grass, or refuse to drink water and get dehydrated (thank goodness since she didn't like the taste of it). One girl did have to be carted out by air ambulance because of illness, thus proving in Mama Logic that warning my child about everything I can think of might possibly prevent disaster or mitigate one. Or not.

We survived a sleepover party for 11 last night. The 4 girls there (my daughter has a few over too) were very well behaved, umm, in contrast to the boys, who went completely wild for a while and would not listen when I could not get upstairs. Fortunately my husband quickly returned with pizza, and while they were all sitting in one place we had to tell them to chill out with the running in circles through the downstairs hallway/study/dining room/living room, use inside voices, stay out of hubby’s office, and be nice to other people and be patient and not yell demands at us since only one parent could help with some of the requests, such as pouring drinks or distributing pizza since I couldn’t lift boxes to access different kinds. We always wonder why we clean up before having a bunch of kids over, because we always have to clean up afterward just as much, what with all the revaccuming, resweeping, and picking up. I've learned asking questions sometimes works best: "S., is that my chair cushion??"

Really, I don't mind, I just get a little overwhelmed, and I think most kids really don’t understand why I’m not helping more. There's still a lot to do with groups this big. I'd get up for a few minutes, sit down for a few minutes. My son was happy to have all his friends there, and the kids were happy to be there.

We should have probably opened presents first, because once the erector set, Star Wars set, model rocket (yes, with explosives, whimper), new soccer ball, and flyer planes for everyone (favors) came out, and when they discovered the electronic circuit kit my son already had, they were fully and agreeably and nondestructively occupied. Yes, this is life at the gifted and talented and tech geeky birthday party. Pull out the physics.

I've learned how automatic it is for my kids to work around me and to do for themselves what I can't do for them. I feel bad about it sometimes, but at the same time they show respect around me and others. Last weekend when we stopped on the way back from taking my daughter to camp, a girl a few years older than Bird pushed pass an older woman on a walker, a woman who was struggling to stand very much--this girl forced the woman to stop and then go around her! She was a Christian, with a church group. And yet she wasn't thinking about anyone but herself. I see people show this kind of impatience with seniors and people with disabilities all the time.

Being taught about disability and being around people with disability teaches people they can slow down for a minute, that they can walk behind the slow individual for a walker; if they think they're slowed down for a few seconds, what about the person in front of them, who is slowed down for a lifetime? A person with a disability doesn't have a choice, but those around them do have a choice in how they react. My kids have learned from me to know when I can't reach something and to reach forward to get it, to walk carefully around me, and to keep the path clear of toys near doorways and walkways since I can't look down with the neck brace and can't get past if I'm using the scooter. But these issues didn’t come automatically. They came because I pointed them out to my children. I had to tell them. Early in life, as soon as they could get around. Watch out for little kids, watch out for people using crutches and canes, watch out for others in general since that’s what’s kind. Slow down for others who are disabled or impaired in different ways, to explain the board game questions to someone who can't hear as well, be patient with those who show language errors, give people time. Push your chair in and keep pathways clear. In this strange new world, we want to leave room to discover and room in our hearts for one another. Hurrying past, you might miss it.

Wednesday, June 18, 2008

Game night and better insurance news

I returned home last night feeling more carefree than I should--it felt good being out. Besides my dear friend, my husband and I were the only "youngsters" among mostly single retirees who are lots of fun, and he the only man. Rules learned:
-Brits are way better at charades than Americans.
-vegetarians always have excellent potlucks.
-D's grandmother, in her 90s, is better at impersonating a tornado than I could be.
-D doesn't like to follow the rules in the box, but to invent her own, such as pulling out all the humdingers and star performer cards out of the Cranium game. Favorite lines from last night:
*if that's 'Stairway to Heaven,' why do I feel like I'm in hell?"
*In response to D's singing: "Killing Me Softly!?"

My husband just got off the phone with the doctor's office (neck brace still in the way of the phone, and can't put it on speaker while friends' kids are over). Our maximum will be about $5000 and they won't stick us with the entire bill--they'll do that for major surgeries, but not for office visits, which is fair. That can be worked into this year's medical budget still. They'll also work with Pain in the Ass insurance company and file the appeals. If insurance will pay for the surgery center, we'll get $2700 back to put toward the surgeon since insurance should be paying at 100% at this point, except what they refuse to cover, which is, if you've seen my medical budget, a whole lot. So I guess I freaked out too soon, but we've always had to pay the remainder before, with one exception.

I don't know how office assistants deal with insurance companies; they leave me in tears. I don't think I could do that as part of my job.

Pain in the Ass Insurance turned down my heart monitor and then claimed not to have denied it to us, so that we couldn't appeal and had to start over. They directed us to all kinds of third-party agengies who handle approvals and medical equipment, where no one had any records either. I'm not quite sure how the nurse negotiated for one, but this really wasn't a good use of her time.

Summer goes by too quickly. I'm trying to go swimming several times a week after work hours at the in-laws (good for me and the kids), trying to get out as much as possible (without spending much if any money).

Another friend called tonight and will come bearing food at 5:00. Although I can do more now, I'm still not able to do "enough" and my husband has a lot of responsibilities. It's still greatly appreciated and allows us to catch up on other tasks.

Tuesday, June 17, 2008

Insurance hell

In April our insurance company sent us a letter that they had approved my spine surgery. Yesterday, they sent us a letter saying my surgery had never been approved. Today they sent us an account summary denying most charges for my surgery and sticking us with $20,000, although our out-of-pocket limit starting in 2008 is supposed to be $7500 (this doesn't include all the items they regularly decide not to cover or deny absolutely, such as the scooter and lift, medicines, therapies for son's autism, denied claims for regular appointments and labwork, etc., which accounts for our other $7500 a year). Hubby's been on the phone trying to get them to work out the contradictions, and that he hold both contradictory letters in his hand. My job is to try not to freak out too much in the meantime. The day before surgery, we were told we owed $2000; the day of, $2700. A large way from $20,000. We really have to call his employer and complain about what assholes (no apologies for the language) the people at this insurance company are.

And they claim work is not a medical necessity (thus no scooter). If we're stuck even with a small percentage of this bill, I can't get medical care the rest of this year and would consider filing for bankruptcy. Forget it. Disability is way better than financial ruin.

I would never have had the surgery, despite loss of bladder function and increasing sensory/nerve issues in my hand and arm, neurological lesions, pain, etc. if I'd known this.

That's just the surgeons'/doctors' portion. They also turned down the $32,000 bill for the surgery center and said that wasn't preapproved. The insurance company says I won't owe for that either, but if they don't pay, I'm certain the surgery center will attempt to charge us. I guess I was supposed to have surgery in my backyard or the kitchen table or something. Yes, the surgery center also preapproved it with the insurance company!

Also, the roof is leaking again. Grrr. I forgot to tell my daughter to hold her hand flat to feed horses before she went to Girl Scout Camp, though I emphasized drinking lots and lots of water. I guess if her fingers had been nipped off, I would have heard about it already. You can't stop a mama from worrying.

Over to friends' tonight, a needed break.

If there's a hell, insurance company executives belong there. That is all.

Friday, June 13, 2008

CardioNot


[Photograph of a gray bricky CardioNet heart monitor, larger than user's hand.]

One of the new joys of the new heart monitor (finally got one, yes I did, after the noticeable symptoms went away) is that you have to carry a small plastic brick around with you everywhere you go that beeps continually if you disconnect it to go swimming or take a bath and can only be silenced for about a minute at a time. This little brick, which is in addition to the sensor you put in a pocket or clip to your belt, uses cell phone technology to transmit information to the call center and has an advantage over other heart monitors in that you don't have to have access to a land line and thus run into trouble if you're out of the house or office for a long time. The disadvantages are many:
-imagine you're a 50-year old overweight male in middle administration at a company that has fired people with health problems or who are older and that you have to start carrying one of these around to meetings. They don't fit in a pocket, not at all.
-post spine surgery, no fun. Too heavy to carry around.
-people who have other injuries/disabilities, or use crutches or canes? What are you thinking, people?
-for workers in health professions, construction, teaching, food services, sales, it's impractical to carry one of these around.
-it's difficult to keep up with, even for someone relatively inactive. While they claim to have a range of 10-20 feet, they don't and mine beeps at me if I get more than 5 feet from it.
-we're in the suburbs, and it gets poor cell phone reception everywhere. What about when we go out of town or travel?

With current technologies, CardioNet could easily figure out how to make this cell phone technology cell phone sized.

Another joy of heart monitoring that I noticed the last time I wore one is that if you don't wear thick clothing you look like you have extra nipples in the wrong places. When I first discovered this, I wanted to catch up to the smirkers once I figured out why they were staring at that spot and show them, "See, see? It's not what you think it is!" And don't even think about going to an airport, especially if scanning is involved.

This monitor, though, doesn't have a button that you can accidentally push, as LifeWatch does, transmitting the sound of three recordings of your irregular heartbeat in a very loud way to your coworkers.

So my resting heart rate's been 120 all evening. Fun. Why do I keep craving salt and chicken and chicken broth? What did my bone donor eat, anyway?

Tuesday, June 10, 2008

Where the Streets Have No Name

"I want to run,
I want to hide,
I want to tear down the walls
That hold me inside...
Where the streets have no name"
--U2

Only I would get wanderlust when gasoline is $4 and head hubby out down roads that are only numbered, with not even a map in the car.

The kids fed ducks and caught fireflies tonight. Everything closes too early. I always get my second wind at night, after a lot of pain in the afternoon/early evening.

Monday, June 9, 2008

"In perfect harmony"

Bear with me, former PE students. I'm supertired, but I promised Elizabeth a PE report, one that has some odd turns.

My early PE days were fun and uneventful and not particularly memorable and PE often ended up on the playground. Life was pretty happy on the playground, even though I cracked my kneecap when I went flying off the pod-shaped alien climber that everyone else jumped off of regularly and had to play chase holding my broken rib. I learned not to jump off the last few steps of the slide like everyone else since I ended up with injured teeth and a mouth full of blood and dirt. We had jump rope, races, and dance activities, often combined with music. Nothing could beat our Field Day. The music teacher, who sometimes taught in the gym or with the gym teacher, was a real hippie with long blond stringy hippie hair and a hippie autoharp, and who liked to sing "Kumbaya" and Kermit songs. I liked to pretend that she was in the "I'd like to buy the world a Coke commercial." As a matter of fact, I think she sang something similar. She taught us the word "cooperation" and emphasized the word "love." Outside, we had tricycles, balls, a whirly-go round thing that spun me until my vision was as blurry as my lovely but uneventful memories. Uneventful days except for Penny's wrap skirt falling off her once.

Then life changed. We moved to a different city and a new school. For PE I got Ms. Woodcock, otherwise known as Ms. E. Just out of college, Ms. E. loved to line up kids and make them choose sides. The first lesson I learned in Ms. E's class was, "Sticks and stones may break my bones, but words will never hurt me." Ironic. Remember this detail. Unlike Ms. Hippie, Ms. E. was not about "cooperation" or "love" but about "competition." Competition, Ms. E. taught us, was a good thing. It was what would make you a "winner." Ms. E. took an immediate dislike to me because I could not move as fast as she demanded during vital, world-changing activities such as square dancing and springboard. She took all her favorite kids out and played softball with them, while relegating us misfits to the back play areas.

There was a nicer assistant teacher, whose son was (is?) a well-known professional athlete. I think she was a lesbian, and she had cool Adidas sneakers. She was both nice and a PE teacher, which suddenly confused me. I liked her a lot (talk amongst yourselves). But her attempts at niceness couldn't work so well when Ms. E. was yelling directions at people. Two years later, Ms. E., my nemesis who loved to hate me, the two black girls, and R., the really obese kid, made a bad decision. She decided she would run relays one day, but she decided to run it a different way, so that multiple kids were sometimes in the same path at the same time (kids finishing and kids starting). An example of very bad decision making. The end result was that B., a friend upon whom I had a serious mutual crush, smacked into me with force. I dislocated and broke my ankle, leaving a large egg shaped lump on the side of my leg where the bone had moved. Ms. E., not to be deterred by a turn of events that would make others queasy, made me walk on the ankle back to our classroom and dismissed my "whining," that people couldn't go to the clinic for every little thing. It was a long and difficult hallway, and of course I had to walk all the way back to the front of the building later to return to the clinic. Not ready to give up her illusion that I was just a wimp or her illusion of power, Ms. E. continued the same activity all morning. Not her best decision since other students were similarly injured. B., in contrast to Ms. E., was wracked with guilt. In recompense, I told him that his little brother was really so cute and adorable and that he looked exactly like him (draw your own conclusions).

Ms. E's contract, for some reason, wasn't renewed the next year, and she eventually opened a local dance academy. Since Ms. E. had her children in her 40s and I had mine much earlier, we were in the same group of preschool mothers for a while (the initial look on her face: priceless). B. moved after 5th grade, I never heard where. The internet tells me he has a promising career and has published several books. And I got to return to wearing skirts or dresses and cute shoes every day, verboten on PE days. (Skirts are easier with casts; too bad for the guys.) I still rebel against her by wearing skirts or dresses as often as I can. My regret with PT is I can't. That's one aspect of ballet I miss, exercise in a skirt. Sometimes swim skirts work.

People always wonder why I don't send my kids to Ms. E's dance academy.

I had a few more PE experiences, but was mostly excused from PE because of greater injury that kept me out of school for a while. I was able to take some dance classes later on (not Ms. E's.) My sister's experiences were similar, as were our friends'. Her middle school teacher wouldn't allow treatment of a dislocated wrist. She also yelled at my sister for not allowing her pet student to bounce basketballs off her head and when pet student broke my sister's glasses.

***Plot Spoiler Ahead.*** In the movie Mr. Woodcock, the grown protagonist/writer returns to his hometown and must confront his nemesis--his former PE teacher, who is now, umm, "dating" his mother (no Oedipal complex there, no sirree). Sorry to say, our protagonist/writer doesn't stick with his conclusions that Mr. Woodcock is a cruel person, but in the end decides that the cruelty was important in shaping his own life and character. He doesn't deny Mr. Woodcock's actions, but he does deny his earlier emotions, the middle-school self who is humiliated and belittled and dreads every day with Mr. W. While this comedy is over-the-top and someone such as Mr. Woodcock would be fired faster than you can say "dislocated ankle," it does reinforce the idea that bullying is okay and that physical fitness is at odds with kindness.

Me? I prefer Ms. Hippie's cooperation and love, and I'd still like to buy her a Coke.

Happier updates soon

Suffice to say that I've been able to get out some the past few days, thus less blogging. In the meantime, read about Elizabeth's postcard project. I'm resolved to find something similar to do.

Thursday, June 5, 2008

Insurance company

So the insurance company has denied my Holter monitor, though I continue to have extreme symptoms, since I had one last March--for different symptoms. As with one of my friends who has become expensive, they'd probably rather see me dead. If I'm paying $15,000 a year out of pocket, I know that's a fraction of their costs. Or maybe they'd just rather pay for the ER.

Too weak to speak

Why can't I stick up for myself, strengthen my points, hold strong, when opposed, when people perpetuate their disablism? By failing to do so, I reinforce their stereotypes, among some of the people best able to make changes--if they wanted to. Silence would have been better.

Trying to find a middle ground, not casting a pointing finger, sticking it to the issue rather than disablist words, not pointing out my own position--that there are real people with disabilities and you're hurting one of them--I do all of us a disservice by conceding anything to people who do not attempt to see my point and refuse to examine their own disablism.

Wrongo

I can't reach the saltines in the pantry, and I needed something gentle on my still queasy stomach. So I reached for a fortune cookie. Bad choice for several reasons. I almost didn't read it: "An admirer is concealing his affection for you."

Fuck off, fortune cookie.

Wednesday, June 4, 2008

Perspective

In Feast of Love, Greg Kinnear slices the tip of his finger with a knife because he wants to hurt as badly physically as he does emotionally: "I wanted to feel as much pain in my body as I did in my heart." Despite the physical pain, I think it's approximated the worst of my emotional pain or grief only a couple of times. And the emotional kind of heart pain lasts far longer. Given that, who am I to complain about health or disability issues?

My liver enzymes are a little high from pain medicine, no surprise. I need to wean off that. So what happens when the low back issues return? Perspective.

Tuesday, June 3, 2008

Medical Mystery, Continued

Last night we watched an episode and a half of Medical Mystery: Mystery Diagnosis (on the Discovery Channel). I don't think I could watch it on a regular basis because I felt rather ill from the stress and compressed drama (decompressed drama, that's what I need), not from the actual medical conditions. I was a little appalled at how long it took some people to seek the emergency room. When one of your legs has doubled in size after spine surgery, that's a good time to go, not when you develop even more symptoms. I was also appalled that someone's GP didn't send him to a neurologist rather than a PT first, or at least seek additional information. My husband would kind of startle when I would start shouting out bloodwork that needed to be done. I mean, they should have suspected an infection right away with the guy who had spine surgery who developed a high fever, massive headaches, and leg doubling. Turned out it was something else, but the surgeon blew him off for a long time. Uh, that's not a normal sequence of events.

It also fed the inner hypochondriac, which my doctors don't need right now. Are my legs swelling? Is it a blood clot causing my problems? What about that rash I had a few months ago? Maybe I should have mentioned my nausea to my doctors?

My blood pressure got down to 88/47 last night. I woke up tingling/feeling like all my limbs had gone to sleep again, dizzy almost to the point of passing out, but didn't. Called the cardio back today and they said I don't need to go to ER unless I pass out since these are just the prodromal symptoms. Yes, but how low can my BP go without going to the ER? The nurse did say they'd let me know before the one-month follow-up if anything significant shows up on the labwork, which is good.

Ill again with stomach, really not feeling well. I don't know if other people have seen this website, but wrongdiagnosis.com is cool for plugging in various symptoms and coming up with some possibilities. It can also give you other possible diagnoses for an illness you do have if you type that in.

Monday, June 2, 2008

Medical (Unsolved) Mystery

Today J., who took me to the doctors' office (notice the plural), mentioned that her husband watches a show called Medical Mystery every night (the name of my imaginary board game!). Medical Mystery is on the Discovery or National Geographic channel, she wasn't sure which. I'll have to look for it. My husband joked later that they could make a new version for me, more along the lines of Unsolved Mysteries.

My passing out could definitely be benign and pain related. Or it could not be benign and be something else.

Spurred on by my my PT's congratulations last week that I wasn't taking pain medicine (I thought, wow, "I'm not?", had forgotten to mention it), remembering just before I was wheeled off for surgery that I was allergic to latex, and forgetting the sulfite allergy a few procedures ago, I finally grumpily realized it's getting dangerous for me to rely on my memory alone, so I used an online program to start recording allergies and medications I've taken/do take. I also realized as my medical history becomes extremely complex that I forget about some issues such as having chest pain in March (I happened to reread my blog), so I should keep a few concise notes. I can still control the rate of info, but it's more accurate and less difficult for me to remember something within a finite appointment. I didn't today mention the aphasia or alpoecia, for example, though the aphasia was obvious to me today and to my friend, who hadn't seen me like that before (was pretty bad when I was first in the car). Pain and lack of sleep from pain, I think.

I saw two cardiologists, not sure why, maybe because the newest one is well, newish? I can think of several explanations, not sure. It was a bit like being interviewed by Thing 1 and Thing 2, or playing good cop/bad cop. I kept my story straight, but since it was a long one, it was exhausting to play again. Maybe doctors win Medical Mystery more often when it's a multi-player game. Ha, but I brought J. in with me, so we're matched. I was glad I had J. with me because I forgot a few details later. Even she said she felt like she needed a tape recorder to remember it all. This is the gist of it, a long way of saying, "we don't really know what's wrong with you, if anything, but here are tests that open up about 75 possibilities":
-echocardiogram because of possible relation to rheumatic issues, to check squeezing function of heart (this is what I referred to as the "ejection fraction," but okay, the first doctor can use less technical terms if that's easier for him)
-recheck of most bloodwork to make sure there's no occult bleeding ("hidden bleeding," the second doctor called it), no subclinical thyroid issues, no low electrolytes (ha, with all the fluid they pumped into me postsurgery), no major anemia, etc. The only anemia I probably have is from having blood drawn all the time.
-14 day monitor that both triggers itself and that I can trigger, to check for arrhythmia
-possible tilt table test after these depending on other results (I didn't admit I know what this is).
-possibly looking at spine issues since it's possible that there could be some postsurgery compression that's a more major issue. Cardiologist #2 said this is an easy test (J. remembers this, I don't, it would have to be redoing nerve testing).

I had the echocardiogram and labwork done today, but they'll make me wait a month to find out as part of a test of how medical mysteries perform under stress. (Actually they're waiting to get the heart monitor test results back at the same time. I assume they'd call earlier if there's something more drastic found.) This is in such contrast to Elizabeth's experiences with a far more severe condition that I feel additionally bad for her. This is almost too easy for me to get everything I need done. I don't understand it. She needs more help in this regard than I! Too much unfairness in this world.

Cardiologist #2 said that I definitely need to go to the ER immediately if I pass out again for my own safety. I'm not sure what the concerns are, but he was emphatic about it, despite the possible costs and waiting, which he acknowledged. He said it was for my own safety and no other reason.

J. said she was impressed by my medical knowledge and said she learned a lot. She said it was very helpful that we made a list of representative blood pressures/heart rates when I felt most dizzy, compared to my usual blood pressure/rate. She said my details were good, that she said she would have said, "I felt dizzy and passed out," and would have been unable to remember the other information. I was glad for her company. It was nice to wait with her and made the time pass more quickly. I've been a little desperate for adult company!

This afternoon I went to my daughter's awards ceremony at school. I realized how many friends we have from this context alone. Many, many people were offering to give us additional assistance as we need it, with driving, errands, foods. I think some of them are going to get hurt feelings if I don't call on them! So I do need to rely on them. Plus it would be good sometimes just to have them bring their kids over to play with ours or to take them out somewhere, just everyday errands and tasks, since I can't take them out so much.

The vacuuming is done and bathrooms are clean, but my husband does need a little more of a break since he is working continuously all the time.

Sunday, June 1, 2008

Big Bad Tooth Fairy

I figured out my son is scared of the tooth fairy, because he sleeps downstairs in the living room every time he loses a tooth. Sweet little guy, it is a little scary to have wee tiny strangers popping up in your bedroom and sneaking under your pillow at night. Admitting fears is not something he'll usually do, but he's quite insistent about any adjustment he needs to make for one.

To Wake or Not to Wake

My husband's sleeping on the loveseat. He never naps midday. I wouldn't wake him up. But I feel like it. I feel like asking him, "Do you want to vacuum?" This is what he calls a "girl question" because the appropriate answer when it's actually asked is never "no." The list of of what needs to be done around here is huge, more than just he can do in a short time. All the work I did presurgery is now undone, and the kitchen and bathrooms really need a good cleaning, the furniture needs dusting, and the floors need vacuuming and sweeping. Just keeping everything picked up, dishes done, laundry, getting meals one way or another, yardwork (every two weeks rather than every week) and helping me out consumes most of the time, however. I really want it dusted and vacuumed. I really can't vacuum, doubt I can dust right now. Aaaargh. Perfectionism and disability clash, though there's a lot to be said for good organization at times like this.

Son is upstairs, strumming out his version of the blues softly on dad's guitar. They make me laugh sometimes.