Monday, December 31, 2012

Switching Years

2012 was a wild year. It was, hands down, Maggie's healthiest year on this planet and for that I am thankful. .Maggie turned 18 this year, signed up for social security, had a HUGE birthday bash, received a notice for jury duty and a call from a military recruiter. We entered a new level of bureaucratic hell, but continue to find the entertainment value in all of it.

It was a year of wheelchair woes and broken headrests. I have become master of duct tape and Steve is about ready to get his certificate in wheelchair technology.  We are still waiting for things to be right, but the year will end without it. The biggest wheelchair problem of all was in June when we had to call 911 and have the firemen free Maggie's foot that was wedged into the chair. Maggie managed to flirt with the paramedics, so disaster was averted.

We were so proud when Steve's lifelong friend Chris Stevens was named Ambassador to Libya in January, confirmed in March (or so). We were so happy to see him in January here for dinner and again in May when his mom had a party for him before he returned to Libya to assume his post. We were devastated in September when he was killed in the attack on the consulate in Benghazi and have yet to come to grips with that. Steve found himself being interviewed on numerous networks and news programs and delivered a wonderful eulogy at Chris' service in October. (which you can read in its entirety on the wonderful site

2012 saw Steve and I take out first real vacation in over 20 years. It was short, but great! Maggie did fine without us, thanks in part to Tim being here. Maggie was thrilled when Tim moved home in May and she will be bummed out when he leaves for Chicago next week. (Wait until we go visit him in April.) Maybe we can get Eddie and Grace to come up and keep her company while we go.

The boys are thriving. Eddie and Grace are happy and doing well in their respective jobs, Tim is heading of on a new adventure next Monday. Steve is busy at work and surrounded by nice people.

After years of volunteering, I started working at UCSF a couple of days a week, which is great. I'm not even making enough to buy groceries, but it feels good to dip my toe into the water after years of working on my own. More changes lie ahead in 2013 as long as Maggie's good health holds out.

2013 looms large - just 10 hours away as I finish this post. I wish for continued good health for Maggie and for everyone. I hope things get easier for so many people who have had a tough time this year. Though we are about to go over the fiscal cliff (which will be fixed retroactively if they ever get off their butts and DO something) I hope the economy continues to chug upward and people get back to work. I hope we adjust to this adult level of bureaucracy and don't have to sink down another layer, but Anthem Blue Cross is doing its damnedest  to send me over a different kind of cliff.

I'm packing my parachute for the ride.

Mostly I hope 2013 is good to everyone.

Happy New Year to Everyone out there in Maggie's world.

Friday, December 28, 2012

What I did on my Christmas vacation

The 12 days of Christmas Vacation - so far. (and it's day 5)

Twelve loads of laundry
Eleven adjustments to the wheelchair
Ten days off school (not counting weekends)
Nine of the same jokes over and over and over again
Eight diapers (a day)
Seven different nurses
Six leaking tubes
Four days of rain (so far)
Three different family parties
Two episodes of respiratory distress
and an 
emergency trach replacement

I love vacation.  School starts Jan 7.

Then the Pipers will start piping!

Thursday, December 27, 2012

Teach the Children Well...

This story has been making the rounds. It is lovely and deserves teh attention it is getting. Rather than try to retell it, I am copying the article from the NY times and will like to the video. Sorry the fontt keeps changing, just ignore that.

Well worth your time and attention

Laws of Physics Can’t Trump the Bonds of Love

Jeffrey Wright is well known around his high school in Louisville, Ky., for his antics as a physics teacher, which include exploding pumpkins, hovercraft and a scary experiment that involves a bed of nails, a cinder block and a sledgehammer.
But it is a simple lecture — one without props or fireballs — that leaves the greatest impression on his students each year. The talk is about Mr. Wright’s son and the meaning of life, love and family.
It has become an annual event at Louisville Male Traditional High School (now coed, despite its name), and it has been captured in a short documentary, “Wright’s Law,” which recently won a gold medal in multimedia in the national College Photographer of the Year competition, run by the University of Missouri.
The filmmaker, Zack Conkle, 22, a photojournalism graduate of Western Kentucky University and a former student of Mr. Wright’s, said he made the film because he would get frustrated trying to describe Mr. Wright’s teaching style. “I wanted to show people this guy is crazy and really amazing,” Mr. Conkle said in an interview.
The beginning of the film shows Mr. Wright, now 45, at his wackiest. A veteran of 23 years teaching, he does odd experiments involving air pressure and fiery chemicals — and one in which he lies on a bed of nails with a cinder block on his chest. A student takes a sledgehammer and swings, shattering the block and teaching a physics lesson about force and energy.
But each year, Mr. Wright gives a lecture on his experiences as a parent of a child with special needs. His son, Adam, now 12, has a rare disorder called Joubert syndrome, in which the part of the brain related to balance and movement fails to develop properly. Visually impaired and unable to control his movements, Adam breathes rapidly and doesn’t speak.
Mr. Wright said he decided to share his son’s story when his physics lessons led students to start asking him “the big questions.”
“When you start talking about physics, you start to wonder, ‘What is the purpose of it all?’ ” he said in an interview. “Kids started coming to me and asking me those ultimate questions. I wanted them to look at their life in a little different way — as opposed to just through the laws of physics — and give themselves more purpose in life.”
Mr. Wright starts his lecture by talking about the hopes and dreams he had for Adam and his daughter, Abbie, now 15. He recalls the day Adam was born, and the sadness he felt when he learned of his condition.
“All those dreams about ever watching my son knock a home run over the fence went away,” he tells the class. “The whole thing about where the universe came from? I didn’t care. … I started asking myself, what was the point of it?”
All that changed one day when Mr. Wright saw Abbie, about 4 at the time, playing with dolls on the floor next to Adam. At that moment he realized that his son could see and play — that the little boy had an inner life. He and his wife, Nancy, began teaching Adam simple sign language. One day, his son signed “I love you.”
In the lecture, Mr. Wright signs it for the class: “Daddy, I love you.” “There is nothing more incredible than the day you see this,” he says, and continues: “There is something a lot greater than energy. There’s something a lot greater than entropy. What’s the greatest thing?”
“Love,” his students whisper.
“That’s what makes the ‘why’ we exist,” Mr. Wright tells the spellbound students. “In this great big universe, we have all those stars. Who cares? Well, somebody cares. Somebody cares about you a lot. As long as we care about each other, that’s where we go from here.”
As the students file out of class, some wipe away tears and hug their teacher.
Mr. Wright says it can be emotionally draining to share his story with his class. But that is part of his role as a physics teacher.
“When you look at physics, it’s all about laws and how the world works,” he told me. “But if you don’t tie those laws into a much bigger purpose, the purpose in your heart, then they are going to sit there and ask the question ‘Who cares?’
“Kids are very spiritual — they want a bigger purpose. I think that’s where this story gives them something to think about.”
Mr. Wright says the lecture has one other purpose: to inspire students to pursue careers in science and genetic research.
“That’s where I find hope in my students,” he said. “Maybe if I can instill a little inspiration to my students to go into these fields, who knows? We might be able to come up with something we can use to help Adam out one day.”
Here is the link to this exact article where you can watch an amazing 12 minute video if you are so inclined.  I highly recommend it. 

Wednesday, December 26, 2012

The Day After

Christmas, for all it's magic and wonder, is exhausting.

Does it make me a Scrooge if I love December 26? I don't think so, I think it just makes me a mom.

This year was a bit more exhausting that usual because we had a piecemeal celebration. Eddie and Grace had to stay in Orange County and could only come up for the weekend before Christmas. Rather than have a nice quiet weekend together, I invited the cousins over for a gathering since Eddie wouldn't see them on Christmas. Not everybody could make it, but  there were 16 of us for dinner on Saturday night.

Here is Maggie and a few of her cousins. (For scale, please note, my boys, Eddie in the hat and Tim in front of him are both over 6' tall.) Maggie was unbelievably happy to be with both of her brothers. She's like a peacock strutting around when they are both here.

We tired to be authentic. We even had no room at the inn. Eddie and Grace were here and then weren't. Grandpa Ed came after they left (but they stopped to see him separately). Grandpa's caregiver slept here too.

Sunday was a day of rest, sort of. Eddie and Grace left and I had to shop for the next couple of feasts. Christmas Eve is our traditional crab dinner. That was only only nine for dinner. I waited too long to order the crab though. I tried on Thursday and Friday in various places but had no luck. The huge storm predicted for (and delivered) over the weekend made the availability of crab questionable. I needed a plan "B". I bought a prime rib and all the fixins for Christmas Eve. We tried four places for crab on Monday morning but no luck. We finally went to Fisherman's Wharf and paid tourist prices for just one crab and had it as an appetizer before the Prime Rib.Christmas dinner is a pot luck and I offered to bring some pasta or a warm dish. I went with ravioli but needed to make more sauce because there were 22 for dinner at Christmas.

Tonight is leftovers. Tomorrow is leftovers and Friday someone can take me out to dinner.

Despite the crazy amount of cooking, eating, and doing of dishes, the rest was lovely. I went to Christmas Eve Mass with my mom and Tim at St. Ignatius, which was beautiful as always. There were at least 20 trees on the altar. Maggie stayed home with Steve and Grandpa, who went Christmas morning -- while I stayed with Maggie.

We all went to my mom's house on Christmas and saw some cousins again and others we didn't see on Saturday.

Maggie was the belle of the ball as always. She was happy to see Grandma and be part of the action

  Maggie and I hope you all had a wonderful holiday.

 Right now we are celebrating the Feast of St Stephen and/or Boxing day. That tradition involves long naps. 

At least it does in this house.  

(Posting delayed by the celebratory nap)

Monday, December 24, 2012

Dash away all....

On Donner, On Blitzen....

Maggie says 

1) take these ridiculous things off my head and 

2) Merry Christmas to everyone out there in Maggie's world.

Friday, December 21, 2012

Christmas Came just the Same

Every year I wait for it to "feel like Christmas" even as I go through the motions of preparing.  I grumble through the shopping and writing of cards wondering why we go through this every year.I go to the parties and enjoy myself but wish they were spread out more during the year, instead of being concentrated into a few weeks.

I complain about the inordinate amount of Christmas decorations we have saying it looks like the Walgreen's Christmas sale aisle. This is just one wall of our living room.  I feel like the walls are closing in on me.

 In short, I am a joy.

And then, every year, when I least expect it, something happens to make me smile and fills me with the Holiday Spirit. This year is happened on December 20. A little later than most years, but still in plenty of time.

Every morning we rush to get Maggie onto the bus. The morning driver, Jerry, is a nice enough guy, but we haven't really connected personally. Before the election he would grumble about things and we carefully avoided any conversation that might get him started. That kept things very superficial. Still he shows up on time every day and takes care of Maggie.  I appreciate his work ethic and know Maggie is safe, and that's really what I need from a bus driver. I always have a little something to give each driver at Christmas to say thank you but I wait until the last day (today) to give it to them.

Yesterday we were outside BEFORE the bus, which is very rare. Generally the garage door opens and Jerry is already sitting out there going through whatever routine he does before he opens the lift door for Maggie's chair. Yesterday we were out there before he arrived. I was proud of myself and felt a little smug. No one was waiting for us and I thought "I ROCK at this crazy morning madness."

Nurse Janice was walking down the street from her car and Jerry arrived within about a minute. Jerry opened the door and handed Maggie a little gift bag. He was giving Maggie a gift!  I was surprised. That doesn't generally happen because.. it just doesn't. And even if the drivers were so inclined, they have so many kids assigned to them that it's not possible. And this was Jerry, not someone with whom we had a particularly close relationship. Inside the bag was a sparkly ornament. Maggie  smiled and reached out to touch it.

I was touched at the kind gesture and thanked him on her behalf.
I stood there as he loaded her onto the bus and felt quite a bit less smug than I had a few minutes earlier.  It dawned on me very slowly that this was the moment. The smallest gesture can do it.  I came back into the house and showed the gift to Steve and said, "Ok, now it feels like Christmas."

Then the Grinch thought of something he hadn't before!
 "Maybe Christmas," he thought  "doesn't come form a store.
Maybe Christmas...perhaps...means a little bit more."

And what happened then...? Who-ville they say
That the Grinch's small heart 
Grew three sizes that day! 

I wish you all a small gesture that fills you with the Holiday Spirit

(but some of these decorations are still going to be retired. )

Wednesday, December 19, 2012

Chef Maggie

Maggie loves to "cook."  Of course, her definition of cooking is different than most. Maggie cooking means Maggie in the middle of the kitchen sending out orders on her dynavox,  pulling open any drawers in reach and throwing everything out of them. We have to make certain there is nothing breakable or dangerous within her reach. Generally it's the dishtowels and lids form the pans that go flying.

If she can reach the refrigerator, she is ecstatic  because it has two doors on top and a sliding freezer on the bottom and she loves all three. She will open and slam them as much as possible. In the interest of our refrigerator, and the food inside of it, she never gets to do that very long.

The other night Tim was cooking the  hamburgers, something he does quite well. Maggie was beside herself. She was in the kitchen doing her thing and she gets to order Tim around too. A great day in the neighborhood!  Maggie was delighted with the entire set-up as you can see from her wicked grin.

It was quite crowded in the kitchen with Maggie's chair and Tim trying to use the stove. I stepped into the dining room listening to the two of them "banter."   Tim was telling her all the things he was putting in the burgers and Maggie was laughing and slamming drawers. After a bit, Maggie had enough and wanted things to get serious. I heard her use her dynavox to say:
                "Tim, cook. Or I'm gonna knock you on your can."

Turns out she's Chef Ramsey.

Monday, December 17, 2012

Never again

Like everyone else, I remain in shock and disbelief over the massacre of 27 people in Connecticut. I hope someway, somehow the survivors of that day, including the families and friends of the deceased, the children and staff of the school, the first responders and everyone else in Newtown, can find a way to move forward from this horrific act. I will continue to pray for the people of Newtown and hope you will do the same. (Or, if you don't pray just send them good vibes) Those children and teachers are at peace, but for everyone else there are many many difficult days and weeks ahead.

The rest of us need to figure out a way to protect our children or any innocent people in public places. This can never happen again.

We could start by demanding some reasonable and accurate reporting from the media, bloggers and politicians. Using a tragedy like this to further one's own political agenda is reprehensible. I have observed  a lot of idiocy in the media reporting regarding what it means to have asbergers, what mental illness is and does or even whether this particular person actually was mentally ill. (In case you are wondering, asbergers is not mental illness.)  Reporters and bloggers are diagnosing this person, his mother, each other, and everyone else when they cannot possibly know what went on. This is not helpful and it just adds to the hysteria.

I don't know anything about what happened and I cannot compare my understanding of disability to this horrific scene - because I have absolutely no comparison. I do know parents struggle with getting help for children with emotional needs and other mental health issues, but I have no idea if that those struggles had any bearing whatsoever on the situation in Sandy Hook.

It is clear, however, that something was wrong with the shooter because believing that a sane person is capable of such evil is simply impossible for me. It is also clear that he had easy access to a legally owned cache of weaponry and that combination of things was lethal to so many people.

 I agree with President Obama on two important counts: 1) that something has to be done to protect the children and 2) that laws can't eliminate evil.

I do know this:  if that principal and those teachers were brave enough to protect those children while facing this gunman, then we have to be brave enough to put the histrionics aside and figure out how to prevent this from ever happening again.

Friday, December 14, 2012

For the children

For the children and teachers killed at Sandy Hook School,
for their families,
for the rest of the school community,
for the Town of Newtown, Connecticut
for all of us.

A very very sad day.

Thursday, December 13, 2012

Please hold for the next Circle of Hell

There s new term out in the world and it seems to be quite popular: Specialty pharmacies. Never heard those words together until about a month ago, now I hear them every day. And every day I cringe just a little bit more. Apparently these "specialty pharmacies" only work if you don't have special health care needs.

I realize that begs the question, why would one need special medications from a specialized pharmacy if they didn't have special health care needs? Beg away. I can raise many questions, but despite my greatest efforts, I cannot find any answers.

We received a notice from Anthem Blue Cross a while back that certain medications could be obtained through their "specialty" pharmacy. It was touted as a service to the insured, which of course it was/is not. Rather than utilize the typical drug store and the pharmacist we are familiar with, Anthem wanted to make our life easier by having me order some of the medications from this "specialty pharmacy" and the be delighted when they were shipped to my door.  I couldn't do this with all the medications, mind you, only these "special" meds that warranted a "specialty pharmacy." That meant ANOTHER layer of hassle because I still had to get Maggie's "regular" medications through my neighborhood pharmacy. Hardly a service.

That happy "service" announcement was soon changed to a warning: "If you don't use our "specialty pharmacy" you will pay more out of pocket because your co-pay will be higher." I smirked at this one because Maggie's co-pays are paid through Medi-cal, the state program for the disabled and/or indigent. These amounts are not your basic $10 or $15 co pay either, the co-pay on one of these meds is something like $3500/month. The other is about $400. Yes, those are the monthly co-pays. Needless to say, I have to utilize the medi-cal plan or we could not afford the meds. In order to take advantage of medi-cal I have to get the drugs in California from a pharmacy that will work with the two systems. So I ignored the warning.

Now it's mandatory. In the space of just a few months, this new "service" is now required. This is problematic for me because the "specialty pharmacy" does not understand what medi-cal is and the chance of of the two working together is slim to none, especially since the required pharmacy is in Florida and medi-cal applies only in California.

I called Anthem last week and explained my dilemma. The guy gave me a waiver for this month, but said it was a one time deal. I would have to go through the "specialty pharmacy" beginning in January.

I contacted the "specialty pharmacy" and attempted to explain my dilemma. It was incomprehensible to them. They said, I would have to pay the co pay and then be reimbursed by medical. Nope. Medi-cal doesn't do reimbursements. I gave them all of Maggie's medi-cal information and the "specialty pharmacy" woman kept asking me for the phone number on the card. There is no such number and even though the card was in my hand, she could not believe that, saying all insurers put a contact number on the card. I told her, you don't understand, medi-cal is not an insurance company, it's the state of California. She said that doesn't make any sense. I pointed out it has worked perfectly well for several years until this "service" turned mandatory.

Maggie is a round peg and this is a very square hole. But she is not unique. She has complex health care needs, as do millions of other Americans. If her (ridiculously expensive) private insurance makes it MORE difficult for someone with complex health issues to get medication, one could wonder about their ulterior motives.

After my 4th or 5th round of calls I did learn that there are exceptions and if Maggie's doctor could fill out a form - one for EACH medication - perhaps Maggie will be excused from the "specialty pharmacy" rule.

Excellent. I got the forms and the doctor signed them on Tuesday when we had a regular visit. I met with the pharmacist to update her on all of this and then the other shoe fell.

Novartis, the manufactures of one of these medications just issued information to pharmacists to advise their patients who use inhaled Tobrmyacin (the crazy expensive one) that effective February 1, they will only dispense this medication through "Specialty pharmacies."

So Maggie  may or may not get "excused" from the specialty pharmacy  program through Anthem, only to be back in it because of the manufacturer.

My mistake, it's not a round hole; it's a Circle of Hell.

Tuesday, December 11, 2012

Tree by Maggie

The tree is up and decorated. There was great debate between the Douglas Fir and the Noble Fir. I really like the fullness of the Douglas and Steve really like to be able to see the ornaments on the Noble. I let him choose and he went Douglas for me. Really, though, no matter what kind of tree we choose, I am always pleased once it's decorated.

It's generally a rather drawn out process taking perhaps three days to complete. The process includes   getting the tree, letting it sit in its stand drinking water for a day,  bringing it upstairs, cleaning up the trail of needles, putting on the lights, waiting for us to be together to put on the ornaments. We were going to decorate it Sunday night, but Tim didn't get home from work until almost 10PM.  So it waited another day. It was done last night and now I have to put the empty decoration boxes back downstairs. Hopefully that won't take me another day.

Putting on the ornaments and the other decorations is fun. Each ornament brings some memory or story or remembrance. We have an abundance of fishing ornaments that have been given to Steve over the years, several from the kids early years, a Santa wearing a Giants shirts and this year we received a nutcracker wearing a Giants uniform, which goes perfectly with our extensive nutcracker collection.

 Tim was intrigued by an ornament that said "to Sally from Joey" and wondered who "Joey" was. He thought he had stumbled on a great story, and  seemed disappointed when I said SHE was my secretary in about 1992.

Maggie helps too. Tim makes her hold the ornament or decoration and then point to where she wants it. It's a S L O W process but he is very patient with her. He makes he laugh which only slows things down further but certainly makes it more entertaining. After every successful placement he would say "tree by Maggie" and she loved it.

Here's a minute or so of their interaction. This had already been going on for several minutes before I turned on the camera. She wasn't being very cooperative making him do all the work, but he would have none of it.

May all your decorating be as fun!

Monday, December 10, 2012

Union Square

We took Maggie downtown to Union Square on Saturday to see the Christmas decorations and hit the big stores. We do it every year and Maggie always enjoys it, until she runs out of gas, And she generally runs out of gas about 20 minutes before we really give up and go home so she was pretty worn out by the time we got back.

We planned to leave around 9 AM, but were slow out of the gate. By the time we left it was nearly 10. That is a crucial hour in parking and crowds, but we marshaled on. As I drove down O'Farrell St, I spied a parking place about three blocks before Macy's  but it was three lanes over and I couldn't make the merge in time. We pushed forward thinking we could find a handicapped spot.  HA! Not a chance. Everything was taken or there were "no parking" signs. In addition, every parking lot was either already filled or there was a huge line of cars waiting to go in. We ended up parking at Steve's office, which is about 8 blocks away.

Once we made the trek back to Union Square we made quick work of buying a couple of gifts and then headed for the windows at Macy's. Again this year, the windows are full of kittens and puppies that you can adopt from the SPCA. It is really cute and a very popular attraction. People were very nice and let us get Maggie's wheelchair right up to the windows but the painted window frame was higher than her wheelchair on the Stockton street side and she couldn't see anything. We went over to the O'Farrell side and she got a good look. The kittens were playful and sweet, but Maggie was unimpressed. Then she saw the sleeping puppy and thought that was hilarious. I guess she's a dog person.

We went up to the 7th Floor of Macy's which is Christmas decoration Central and looked out over Union Square but Maggie and Steve were merely silhouettes when I tried to take the picture. It's funny because I stood in Union Square the evening of the tree lighting ceremony and took a picture of Macy's so these shots are nearly exact opposites (even day/night). We would be standing one story from the top in the picture of Macy's

We had to head to Union Square itself to see the giant tree (visible in the shot from the Macy's window) and then into the St. Francis Hotel to see the castle.

  As you can see from the picture, by the time we got to the castle, Maggie was exhausted. I suggested that Steve go and get the car while I fed her, but we realized there would be no where to stop and load her in so we made the trek back to his office together. Maggie was wiped out, but she had fun. She had a nice quiet afternoon.

Because I am her mother and feel everything she feels, I took a nap as soon as the nurse arrived.

Friday, December 7, 2012

Garbage Hell

Anyone who reads this blog knows how much I love San Francisco. I gush about it's beauty and quirkiness. There are times, however, when the city I love is beyond ridiculous. The recent need to pass a law to prevent the growing public nudity craze comes to mind. There are so many others.  Last night I witnessed the ridiculousness first hand at my front door.

It was early evening, maybe 6 PM and I was cooking myself a quesadilla, reveling in the fact that no one would be home for dinner and I didn't have to cook a full meal. The nurse was halfway through giving Maggie her meds, a process that takes 90 minutes. They wouldn't need my help for another hour.  I was ready to sit down and relax. I heard the doorbell and presumed it was another person raising money for some worthy charity. About half the time I don't even answer the door, but I did last night.

It wasn't any worthy charity at all. Instead it was four people, two women on my porch and two men down the stairs on the sidewalk. They were from the City and they were here to "educate me" about my garbage habits.

Yes. The GARBAGE COPS came to my door and made me burn by dinner. (Don't worry, I composted it)

You may recall this entry Maggie World: Garbage Cop from a month ago when I witnessed the garbage cop inspecting my garbage very early in the morning. This was a follow up visit to "educate" me on the proper use of the garbage system. They were very nice but  apparently I am headed for garbage jail or garbage hell if I don't straighten up.

My reaction was less than favorable.  I told them:

1) I had seen the guy with his head in my garbage can with a flashlight looking for errors at 5:45 in the morning. If they insist on looking that closely for problems, they will certainly find them because NO ONE can pass a white glove test like that, especially when it comes to the dirty world of garbage,

2) that there are several nurses here taking care of Maggie and I cannot control where they put various pieces of garbage any more than I can control those who scavenge through the cans after they are out on the street, and

3) that we are extremely compliant with all the rules and we recycle 100 times more than anyone else on the block (because we have so much garbage, but I left that out) and that I would think they would be here congratulating us on our 98% compliance instead of chastising us for our 2% (if that) failings.

They assured me they weren't here to chastise only to educate. As my eyes widened in disbelief a bit more they handed me an "educational"  brochure. The fancy brochure starts our nice enough

but when you open it you find out this is THE LAW!

As I glanced at this, I wondered about the cost to both the environment and the taxpayers for such a slick publication and knew exactly which receptacle in which to place it. .They suggested perhaps I could instruct the nurses. I was very nice, but I was losing patience fast. I inhaled sharply and said "you don't understand, this is as good as it's going to get and it is very very good. I would think you would be rewarding me."

Please understand something. The message they are spreading is not objectionable to me.  I think it is very important to recycle. The point is WE DO SO RELIGIOUSLY. I have a problem with the priorities of the city to employ an entire garbage police force who drive around in a city car, partially blocking my driveway for an hour while they make their "rounds" "educating" scofflaws like me, especially considering  I am already getting an A in recycling. 

They asked if I had any questions and I said, "Yes I do. Why is it that there is money for FOUR of you to be garbage cops and come to my door after dark but my daughter has to take furlough days from school. Why can she not get the services she needs but garbage is a priority?" 

They didn't have an answer.  

Do you? 

Please consider the environment before printing this blogpost.

Thursday, December 6, 2012

Rock Bottom

I remain in a state of disbelief that the Senate failed to ratify a UN treaty on world wide standards for the treatment of the disabled. The standards they seek are the very standards that already exist in the United States. We have the best standards (and I argue they are only a start in many cases) and the hope is to attempt to encourage other countries to raise their standards to meet those of the US. Because it's a treaty it needs a 2/3 majority to pass and it fell short because the most conservative members of the senate don't like the United Nations.

Jon Stewart took on this issue last night and he captures my feelings on his perfectly, and hysterically

Sorry, can't imbed it but here's the link

It takes a minute to load, but it's worth it.

Wednesday, December 5, 2012

Call me Maybe

Several phone calls today, in and out. I have ordered Maggie's oxygen, and made an appointment for her flu shot the day after her visit to the pulmonologist next week. I followed up on several calls for things in my "to do" pile, calling  insurance companies, etc etc. I saw there was a major accident that closed the Golden Gate Bridge and managed to call Tim just in time to prevent him from getting stuck in the traffic mess that ensued. (Once you are stuck in that type of mess, you are just stuck. There is no where to get off the road when the Bridge closes like that.) The phone was my ally today.  The diapers and other supplies were delivered and Tim and I put them away. In addition I have finished a few non Maggie projects that have been languishing. Generally, I  feel a bit accomplished for a rainy day.

I finally was able to return a roto-call that Maggie has received 15 times about signing up for the voluntary/mandatory/voluntary specialized medication coverage provider through Anthem. After about 20 minutes working through the automated system I finally reached a live person and advised her that NO, we will not be signing up for this because Anthem is only the primary coverage and I have to get the medications at a pharmacy that will work with or utilize medi-cal, which is secondary. She warned me that I would be paying more out of pocket by not using them, I chuckled and said, " no, I won't." Medi-cal picks up the co-pays and one of her medications has a co-pay of $3700; hence the $10 or $20 charge for not using this service, is peanuts compared to the thousands it would cost me if I did. I think she understood and said she is making the famous "notation in the computer" so the calls will stop. I have trouble believing that, but hope springs eternal.

If I was successful in stopping that call that's great, but I have a few others to work on. Seems as though every time I put the phone down today, it rang. That's ok, it is designed for two way communication. I certainly used my end to get things done, so let's see what interesting people are trying to contact me. In addition to two of those roto calls I described above, the calls that have come in have been promising me a lower mortgage payment, a lower credit card payment, clean carpets/furniture, a good deal on gardening,  and have asked my opinion on numerous pressing issues. Not a single call of substance.

Why does it seem like I'm doing all the work in this telephone relationship? Maybe the landline really needs to go.

Monday, December 3, 2012

Ahhhh, Monday

I know I'm not normal. I absolutely love Monday morning. Especially after a wild weekend. The busiest weekend in recent memory has ended. It was a good one, but wow, I am certainly tired.

Saturday night Steven and I hosted the holiday party for the lawyers in Steve's office. there were about 35 people invited for a catered dinner. Originally we were going to do it here and move Maggie and all her equipment and supplies upstairs for the evening, move the furniture down to the basement, put a tent over the deck and squeeze everyone in. My mom offered her big party house instead. Originally I said no but upon reflection (and my sister saying ARE YOU OUT OF YOUR MIND?) I jumped at it.

There was still lots of rearranging to do, but Maggie was not disrupted. Parking is an Olympic sport in this neighborhood but plentiful at my mom's house, which is so much easier. Also, since it was absolutely pouring rain all weekend, and Maggie's bathroom sprung a leak, I am especially glad we didn't do it here. It all went great, though I still have to get Tim back over there to put everything back where it goes.

My mom was so generous to do that even though all she really got out of it were a few decorations. Her beautiful house looked more beautiful than ever. Walking up the front porch folks were welcomed by several poinsettias and a beautiful wreath and then the entry hall had even bigger poinsettias and small trees (which were then given as gifts when folks left)

The party went perfectly and everyone had a great time. 

Maggie was not that pleased with the whole arrangement, though, as she was stuck at home with the nurse. She and Steve were gong to go out on Saturday morning, but they did home repairs instead. Steve decided to replace the hot water dispenser Saturday morning  had Maggie help him. I freaked out a little when he handed her his power drill, but she thought that was hilarious. And if you need to ask, the answer is NO, he did not let her actually use it. But she did get to press the button while he was holding it and that cracked her up.

Unfortunately for Maggie the installation took all day and she never got to go out, and then Sunday morning was the craziest part of the stormy weekend, so she spent the weekend indoors. The rain cleared around noon, but Steve and I had tickets to the matinee of The Book of Mormon so Maggie was stuck inside again. That play is absolutely hilarious. If you are easily offended I would stay away, but there are some raucous laughs in that play.

Nothing is on the calendar for this weekend, so we will take Maggie out of the town to make up for her weekend of indoor solitude. I think we might have to do our trip to see the Christmas windows downtown.