NASCAR 2012

I'm really excited that the "car of tomorrow" became the standard.  However, this year the cars are so slammed it's made racing totally awesome but the wrecks in this Bud Shootout have me concerned.  Do these youngsters actually know how to handle a car that feels like a car?  Given this evening's wrecks I think NASCAR 2012 is going to be very interesting.

Welcome 2012!

Dear 2011,
Good Bye.  Don't let the door hit ya where the good lord split ya.

I started the year in bed recovering from knee surgery.
When I was strong enough to get up and about on a couple of crutches I found my Road Glide Custom was stolen right out of my garage.
During a big company event I damn near broke my neck thanks to the crutches and the blizzard and almost took out my boss in the process as I fell to the ground.
I then got the flu and had to endure a cross-country flight back home from the big company event.  I just wanted to die.

All of that was just in January 2011.

Things only got exponentially worse from that moment on. 2011 was, without a doubt, the worst year of my life.  However...

As this year comes to a close things are already looking up.

• My pulmonary docs know how to care for my lungs to hopefully keep me out of the hospital.
• I am mobile again and feeling strong.  I know I will drop all this added weight from the accident, and get out and do the things I love to do once again.
• I've got my amazing Dykes on Bikes family all over the world that has always been there for me.
• My NYer friends have never left my side and it's been amazing to see Coyote so many times this year.
• My beautiful niece makes my heart swell to the bursting point every time I see her cute little face or hear her beautiful little voice and giggle.
• Finally, my involvement in San Francisco politics and the San Francisco LGBT community continues to grow.  Happy New Year to all my new friends on the SFPD Chief's LGBT Community Advisory Forum.  I'm really looking forward to all the wonderful things we can do for the most beautiful city in the country.

2011 really sucked, but it feels like I hit rock bottom so hard that the bounce back up is heading straight for orbit.  The end of 2011 has been so beautiful and I can feel that momentum continuing throughout all of 2012.

Happy New Year everyone!
Love,
Becca

Sarcoidosis

Found this great letter on my Sarcoidosis support site...

Dear Patients:

 You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can't understand what your lives are like. How do you answer the question, "how do you feel?" when you've forgotten what "normal" feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won't let you forget about your frailty, your limits, your mortality?

 I can't imagine.

 But I do bring something to the table that you may not know. I do have information that you can't really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won't undo your pain, make your fatigue go away, or lift your emotions, it will help you. It's information without which you bring yourself more pain than you need suffer; it's a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

 You scare doctors.

 No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

 But chronic unsolvable disease stands square in our way. You don't get better, and it makes many of us frustrated, and it makes some of us mad at you. We don't want to face things we can't fix because it shows our limits. We want the miraculous, and you deny us that chance.

 And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

 Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do - most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing's disease, bipolar disorder, chronic pain disorder, brittle diabetes, sarcoidosis or disabling psychiatric disorder - your defining pain - is something most of us don't regularly encounter. It's something most of us try to avoid. So you possess deep understanding of something that many doctors don't possess. Even doctors who specialize in your disorder don't share the kind of knowledge you can only get through living with a disease. It's like a parent's knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

 So when you approach a doctor - especially one you've never met before - you come with a knowledge of your disease that they don't have, and a knowledge of the doctor's limitations that few other patients have. You see why you scare doctors? It's not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

Don't come on too strong - yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That's a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.

Show respect - I say this one carefully, because there are certainly some doctors who don't treat patients with respect - especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.

Keep your eggs in only a few baskets - find a good primary care doctor and a couple of specialists you trust. Don't expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.

Use the ER only when absolutely needed - Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won't try to fully understand you. That's not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.

Don't avoid doctors - one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can't work that way, and I don't think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It's OK to keep a list of your own problems so things don't get left out - I actually like getting those lists, as long as people don't expect me to handle all of the problems. It helps me to prioritize with them.

Don't put up with the jerks - unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don't feel you have to put up with docs who don't listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn't totally suck.

Forgive us - Sometimes I forget about important things in my patients' lives. Sometimes I don't know you've had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don't want to admit my limitations. Be patient with me - I usually know when I've messed up, and if you know me well I don't mind being reminded. Well, maybe I mind it a little.

You know better than anyone that we docs are just people - with all the stupidity, inconsistency, and fallibility that goes with that - who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

 Dr. Rob 

SAM 324

Found this touching contribution to Short Final on AVWeb:

The fallen Betty Ford was returning to Grand Rapids for the last time. Her remains were abord a beautiful United States Presidential airplane painted blue and white. The airport was closed to all other traffic for 30 minutes. Airliners waited patientally on the ground and some in a hold over the GRR VOR. As Ms. Ford's plane, SAM 324, landed, they were cleared to taxi all the way to the end, in front of a thousand people. The tower frequency was absolutely silent.

One unknown airline pilot, in a low, respectful voice, said, "Rest in peace, Mrs. Ford."

After a short pause and in a slow, measured response, the Presidential plane's pilot identified himself:
 

"SAM 324."

This really choked me up and had to share.

The Debt Ceiling

We live in scary times where the dumbest of the dumb appear to be the ones in control and the intelligent and informed are shouted down. Made up history, made up facts, made up laws, made up constitutional wording, have all become facts to the lemmings who are too stupid or too young or both to recall history as it really happened.

The profoundly stupid things being said by the Republicans about the debt ceiling is extremely scary so I'd like to remind them of what their hero said about the debt ceiling:

Congress consistently brings the Government to the edge of default before facing its responsibility. This brinkmanship threatens the holders of government bonds and those who rely on Social Security and veterans benefits. Interest rates would skyrocket, instability would occur in financial markets, and the Federal deficit would soar. The United States has a special responsibility to itself and the world to meet its obligations. It means we have a well-earned reputation for reliability and credibility – two things that set us apart from much of the world.

If they allow the United States to fail to pay its bills by not raising the debt ceiling our economy will make will look so bad the Great Depression will be viewed as good times.

What a Solemn Day

Last night I lost my Aunt Lu.

She was always a joy to be around. A warm, funny, quick witted, light up a room sort of woman. She and her husband, my Uncle Syl, are always in the happiest of my memories. (Even if ya did burn me with a cigar Uncle Syl. LOL. OK, I kinda walked into it.) This is when it sucks being 3,000 miles away from family. Family I would love to be with right now to share and listen to stories of the life and the lives this amazing person touched.

I love you Aunt Lu. I'll miss you.
Rest in Peace Lucille Helen Zabrouski-Sammartine

Let America Be America Again

Anyone that argues LGBT Equal Rights and the Civil Rights movements are not the same thing need only read this poem by a gay black man.

Let America be America again.
Let it be the dream it used to be.
Let it be the pioneer on the plain
Seeking a home where he himself is free.

(America never was America to me.)

Let America be the dream the dreamers dreamed--
Let it be that great strong land of love
Where never kings connive nor tyrants scheme
That any man be crushed by one above.

(It never was America to me.)

O, let my land be a land where Liberty
Is crowned with no false patriotic wreath,
But opportunity is real, and life is free,
Equality is in the air we breathe.

(There's never been equality for me,
Nor freedom in this "homeland of the free.")

Say, who are you that mumbles in the dark?
And who are you that draws your veil across the stars?

I am the poor white, fooled and pushed apart,
I am the Negro bearing slavery's scars.
I am the red man driven from the land,
I am the immigrant clutching the hope I seek--
And finding only the same old stupid plan
Of dog eat dog, of mighty crush the weak.

I am the young man, full of strength and hope,
Tangled in that ancient endless chain
Of profit, power, gain, of grab the land!
Of grab the gold! Of grab the ways of satisfying need!
Of work the men! Of take the pay!
Of owning everything for one's own greed!

I am the farmer, bondsman to the soil.
I am the worker sold to the machine.
I am the Negro, servant to you all.
I am the people, humble, hungry, mean--
Hungry yet today despite the dream.
Beaten yet today--O, Pioneers!
I am the man who never got ahead,
The poorest worker bartered through the years.

Yet I'm the one who dreamt our basic dream
In the Old World while still a serf of kings,
Who dreamt a dream so strong, so brave, so true,
That even yet its mighty daring sings
In every brick and stone, in every furrow turned
That's made America the land it has become.
O, I'm the man who sailed those early seas
In search of what I meant to be my home--
For I'm the one who left dark Ireland's shore,
And Poland's plain, and England's grassy lea,
And torn from Black Africa's strand I came
To build a "homeland of the free."

The free?

Who said the free? Not me?
Surely not me? The millions on relief today?
The millions shot down when we strike?
The millions who have nothing for our pay?
For all the dreams we've dreamed
And all the songs we've sung
And all the hopes we've held
And all the flags we've hung,
The millions who have nothing for our pay--
Except the dream that's almost dead today.

O, let America be America again--
The land that never has been yet--
And yet must be--the land where every man is free.
The land that's mine--the poor man's, Indian's, Negro's, ME--
Who made America,
Whose sweat and blood, whose faith and pain,
Whose hand at the foundry, whose plow in the rain,
Must bring back our mighty dream again.

Sure, call me any ugly name you choose--
The steel of freedom does not stain.
From those who live like leeches on the people's lives,
We must take back our land again,
America!


O, yes,
I say it plain,
America never was America to me,
And yet I swear this oath--
America will be!

Out of the rack and ruin of our gangster death,
The rape and rot of graft, and stealth, and lies,
We, the people, must redeem
The land, the mines, the plants, the rivers.
The mountains and the endless plain--
All, all the stretch of these great green states--
And make America again!

~ Langston Hughes