Saturday, March 28, 2015

Who keeps looking at my blog from Redmond, Washington?

I see this about twice a day, at random times.

Friday, March 27, 2015

It's okay, you can cry. Now give me a hug

Today it happened.  I was out the neighborhood my newfangled wheelchair and  I heard my name being called from behind.  I stopped and made the wheelchair do a 180.

There she was, a friend, not a close friend, not a Facebook friend..  She was someone I've run with and someone I volunteered with.  But it was clear she didn't know what happened to me. The fact that she didn't know was obvious to me.  Not from the look on her face but from the fact that she was covering her face to hide the tears.  For The past 10 months I was afraid this would happen.  I was afraid it would make me start crying.  I was really afraid I wouldn't stop.

But I cried a little too, asked for a hug and then we both stopped crying.

She did make me feel better.  She told me she knew how strong I was and that if anyone can beat this I would.  Because we have crossed finish lines together and she knew that sometimes when I get to mile 26.2 I keep going.


Thursday, March 26, 2015

I am an unapologetic urban liberal elitist.

It never occurred to me to move out of New York City. I never wanted a house with a lawn, extra bedrooms or two-car garage. Shit, I don't even want my car anymore.. I'm really happy to live in an apartment house just the right size for my family. I'm a short walk from two different subways that Prospect Park. That's enough for me.

I can get a great slice of pizza for 10 different places in my neighborhood.  And I can ridicule the people who order from Papa John's.  That's right, if paying $3500 a month to live in a one-bedroom should enjoy the neighborhood. If you want to order chainstore corporate pizza you can live in a flyover state and have three bedrooms and a pool.

Another thing I like about my life is that I'm surrounded by diverse people.  I'm in a running club where about half the people are faster then me  and half the people are slower than me. Another thing about my running club and the rest of my neighborhood is that most people are different than me. Different colors. Different ages. Some of my friends have excessive wealth and others are poor. Some are theists others are atheists and I really don't know what God's most of my friends worship. For most of the people I meet I don't know their sexual orientation until I actually meet their partner.  But there's one thing they all have in common.  Intelligence is a virtue

Last May, when I walked into my doctors office my nurse diagnosed me with in minutes. That might've saved my life.  But it definitely saved me days weeks or months of being misdiagnosed.  It saddens me to read on Facebook how many people get misdiagnosed.  Some of these people live in developing countries. But others live here in the United States, just not mere to a large hospital. Some of them live where it's now illegal to teach social studies and others live in Florida where government officials aren't allowed to say the words climate and change together.  Many live in places where evolution is taught as fact.

I'm sorry if you choose or want to live in a place where children a tought that Adam and Eve shared the land with dinosaurs you're going to have doctors that don't know what rare diseases are and you can get misdiagnosed.

I have been blocked by Facebook friends for saying global warming is real not a theory. They said I was intolerant liberal.  You may call me an ass hole in the comments below.  Go for it.

And believe it or not I do not publish these quickly, this is taken me two days to write  By the way, if you have a problem with my grammar or spelling you can suck it.. And just as I was about to publish it I read this in the Borowitz report.

Indiana Defines Stupidity as Religion

INDIANAPOLIS (The Borowitz Report)—In a history-making decision, Gov. Mike Pence of Indiana has signed into law a bill that officially recognizes stupidity as a religion.

Pence said that he hoped the law would protect millions of state residents “who, like me, have been practicing this religion passionately for years.”

The bill would grant politicians like Pence the right to observe their faith freely, even if their practice of stupidity costs the state billions of dollars.

While Pence’s action drew the praise of stupid people across America, former Arizona Governor Jan Brewer was not among them. “Even I wasn’t dumb enough to sign a bill like that,” she said.

Tuesday, March 24, 2015

Good news bad news on Ack Stress O Ride

The good news was that I tell them that my appointment is 45 minutes earlier than it really is so I stand a chance of getting there on time.

The bad news was that the driver was just so stupid that he couldn't follow my directions and insisted on driving into the gridlock that is always a Flatbush Avenue.  Really, he insisted on driving onto Flatbush Avenue at 930 in the morning. It is gridlock regularly from grand Army Plaza all the way to the Manhattan Bridge. Then once we got to Manhattan he had a drop off in Stuyvesant Town.  The address was on 14th St. but the lady kept telling him that he had to enter the apartment complex from First Avenue.  So we drove in circles all around Stuyvesant Town until he figured out that she was right.  Whatever, see above I built in 45 minutes to my trip, so I can get there on time.

The better news was that because this guy did not drive we went over the Brooklyn Bridge. I used to run with a heart rate monitor. Just for about a year when I first started running. The reason I threw it away was because it was telling me to slow down and lower my heart rate when I ran up the hill but is the Brooklyn Bridge. Fuck that shit. The whole reason to run is to get excited and run hard and over the Brooklyn Bridge. I wasn't wearing a heart rate monitor what I know my heart was racing when we went up that awesome bridge.

I told the story to the driver. I read this book called The Great Bridge. I paraphrased the last paragraph of this great big book. In 1969 there was 100-year-old lady at a party celebrating the fact that men walking on The Moon.  A reporter asked her what she thought of the celebration. She replied, "This ain't nothing, you should've been here when they opened the Brooklyn Bridge."  The driver smiled. The story though may or may not have been true. It doesn't matter, I'm a sightseeing guide that our job is to tell entertaining stories not the truth.

But, back to the driver. He was very nice guy, but he couldn't find his way out of a paper bag.  In my mind I was trying to figure out if he was a putz or a schmuck.  This distinction has been argued for decades on Vaudeville and more currently on Comedy Central.  For the rest of the ride so I wouldn't get stressed out about possibly being late I tried to decide if he was a putz or a schmuck.  I decided to define a Putz as someone who is too stupid to find a way out of a paper bag but knew they were that stupid so they didn't try. My driver however was, a schmuck. He was too stupid to get out of a paper bag but kept trying anyway.   In either case, they are not evil or unpleasant people, just incompetent

More updates about my antics on acess  a ride transportation check out its Facebook page here

Monday, March 23, 2015


That's one of those big words I never really used. I took the SAT twice in the GRE once so I learned all these words but I always use them. I usually say mixed feelings. Like I've always had mixed feelings about Mayor Bloomberg. I like a lot of the things he did but I didn't like the way he did them. I was ambivalent about whether or not I like him as a Mayor. Whatever...

I had a lot more time to think about my feelings when I was hospitalized. When I was in the hospital and especially in rehab I spent a lot of time with people who are old enough to be my grandparents.

I had a lot of time to think of David, Rose, Sam and Yetta (alphabetically). On one hand, I really wish they were around to give me a hug.  On the other hand, I'm really glad we didn't have to see me the way I was. I guess that's ambivalence.

Today I had another ambivalent moment.  I took delivery of a new motorized wheelchair. Fancy. So, on one hand I'm really happy that I don't have to rely on other people to get around the house or the neighborhood.  I'm really happy I don't have to feel like a Roomba, see video below. If I am going to be banged into a wall I'd really love to do it myself..

On the other hand, I'm the guy the for profit insurance companies thinks can have a power wheelchair.

Very happy and very unhappy at the same time.

Sunday, March 22, 2015

The beginning of a new chapter

I've spent a lot of time in Prospect Park and so has Chuck Schumer, my neighbor and United States Senator.  He usually rides a bike for exercise and I'll be a running, hanging out or organizing a race. Once, just after I said "GO!" to start a race I stepped into the roadway without looking. I came within a breath of knocking Chuck Schumer off his bike. I don't think he even noticed me, but we both were a moment away from getting seriously hurt. I've often thought of what would've happened if we would've thumped and one or both of us was seriously hurt. I thought it would've made a great last paragraph to the first chapter of a good novel.  Especially because his wife is irrationally opposed to bicycle and pedestrian safety.

I was going to call this blog post The Beginning of the End. But it been over 10 months and it's not the end.  It is just a new chapter.  Everyone's life has many parts, many changes. People start college, eventually graduate, get married, have kids, change jobs etc. Hopefully, you don't have to start a new chapter without concluding the last. Knocking Chuck Schumer off his bike would've been a sudden change of chapters.. That would've been better than getting CIDP.


This is the view from where I threw up.
The last weekend in April (2014) I had a nasty stomach virus. I remember it vividly, because that Saturday I was staff at a road race where the Port-a-potties were late to be delivered. I actually jumped up on the truck to use one before it was unloaded. Then while stationed at the turnaround point for the race I had to lean over the rail and throw up into the New York harbor. I got home and didn't know which way to face when I got into the bathroom. I had 102 fever.  I emailed my boss saying I can't wake up the next morning at 4 AM do this again. I also remember that I posted my Facebook status saying, "I have called in sick before, but this is the first time I'm going to miss work."

I was five weeks out from my 30th marathon and that Monday I didn't go for a 20 mile training run. I remember putting it off for a couple of days, just figured I'd get rehydrated and then do it. That Wednesday I had some dental work done. Started to replace a crown that was disintegrating. I remember mentioning to my dentist that I just got over a stomach virus that I might have to get up and run to the bathroom. But that didn't have to happen. I left her office with a temporary crown and went home and remembered that my back was killing me. A piece of me felt that I was having another kidney stone but the pain was too centered. I put a hot water bottle behind my back and didn't go for another run.

The end of that week I remember experiencing unexplained excruciating pain in my feet and shins. I thought my plantar fasciitis was doing some weird things and causing shinsplints to come out of nowhere.  I started self-medicating with Oxycodone and Advil. It didn't help at all. So I took more. That caused more problems that I'll talk about in a more disgusting blog post later. The first weekend in May was my kids' birthday.  As a family we saw Avenue Q.  (Little did I know how much I would love there opening song. (See below)).  The pain had subsided and I was happy but I remember it was really hard to walk from the theater to the restaurant
This is what I was hoping to hear
 when I went to the doctor.
That Monday began a very busy work week. I had to drive up to Putnam County and mark a course for a 100 mile bike tour. My boss at the time saw that I couldn't walk up the stairs to his house. He took me aside and said something to me I'll never forget.  He said, "You know I'm a cancer survivor, so am telling you something important.  You need to see a doctor." I made the appointment, for the next day from his house.  When I got home I played with the Internet and googled my symptoms. I knew I hadn't injured myself and I knew that my pain and weakness wasn't muscular so I kind of thought I might have Lime Disease  or something.

In my case it was the opposite 

On Tuesday I got busy with my other job I never made it to my doctors office. The next day I had to go back to Putnam County and as soon as I got home I walked across the street and into my doctors office.

Inhale exhale inhale exhale.( I'm using Dragon, speech to text)  It is getting hard for me to continue.  I'm getting a little farklempt.

So on Wednesday, May 7, 2014, I walked to my doctor's office. I didn't even get to see the doctor. I told the nurse practitioner what you just read. I didn't told her I thought I had Lyme disease.I wanted to let the experts be the experts. Lindsay asked me to take off my shoes and make-believe her hand was the gas pedal. She had me wiggle my toes, and then we kinda arm wrestled. The whole thing took about 10 minutes. She told me to put my shoes back on and sit on the little chair in the examination room. She came back five minutes later and And did something I will never forget.  She took a knee so we were eye eye to eye, and said "I have to tell you something very important".  She said it in bold and italic.

She handed me a piece of paper and told me that I needed to get to the hospital right away. She told me I needed to take a cab from the office. The piece of paper had three things written on it

I looked at the paper and just said what floor is this doctor on, I don't want to get lost in a joint hospital? She said don't worry about it go to the emergency room, they are expecting you.

I told her I didn't want to go to the ER in a T-shirt. I've been to them before and is a long wait and I freeze to death. She told me I didn't have time to go home and change. I think she was afraid I would follow her instructions. I told her I live across the street and I need to get a sweatshirt. I told her I would call a cab from my house. And I did.. And I put on a sweatshirt, an old pair of shoes and put my cell phone charger in my pocket.

Looking back, I think Lindsay, my nurse practitioner's expertise wasn't in just diagnosing me correctly. It was getting me to follow her instructions. Which looking back was impressive. I'm not one to take advice, especially from someone half my age.

Then I Googled Guillane- Barre Syndrome.  "FUCK", I said out loud, "I was shooting for Lyme disease." 

My temporary home — at Mount Sinai Beth Israel.
In the cab on the way to the hospital I was trying to get in touch with my family and the cabbie interrupted me..  He asked me how to get to Beth Israel Hospital. I said "Work it out dude, I'm dyin'."  Lindsay was right, because I was only in triage for about 15 minutes. Two doctors came with a gurney to take me to the emergency room.  They parked me in the hallway right across from the nurses station because they wanted to keep an eye on me.   I posted the photo to the right on my Facebook. (that caused almost as much problems as the oxycodone, I'll get to that another blog post too).  Lindsay was right in my caption was wrong. By that evening I couldn't walk on my own and I stayed in Beth Israel for eight days.  It's a good thing I did what Lindsay told me to do. If I would've blown her off and taken a nap on my couch it would've been a 911 call that evening.

When I was in the step down unit with a blood pressure cuff permanently attached to my left arm and an IV going into my right arm I called my doctor's office and left a voicemail. I simply wanted to know how many other lives their nurse practitioner had saved.

For more of the story of what it was like to go from marathon ready to flat click here.

Feel free to sing along.

Thursday, March 19, 2015

What I said to myself to feel a little better.

it happened really fast.

I was in the emergency room about an hour when they confirmed I had GBS.  Right away they said I needed a spinal tap. .That scared the crap out of me.  I had been in the ER about half a dozen times in my life before. It was easy, I needed them to wrap up my ankle, give me a couple of stitches or shot of morphine and then I knew I'd be out of there. But when they rushed me into the back of the ER for a spinal tap I was scared. I looked up at the doctor and said, "Wait a minute. You're going to do this to me, right? Not one of my kids? Okay!"

I had an epiphany, I realized that I had made a deal with the devil. I traded places with one of my kids so they would not have to have a spinal tap.  It actually turned out that a spinal tap was not as bed as I've seen on all those stupid TV shows. It wasn't fun, it was just about as bad as having a cavity filled.  Except, when you have a cavity filled you are sitting up in a chair. The spinal tap procedure is done when you're in a much more awkward position.

Over the next 135 days I was in the hospital I had to endure some real shit. In the step down unit / intensive care I had to spend every minute of the day with a blood pressure cuff on my arm and IV in the other arm. For eight days I had little stickers on my chest so they know right away if I stopped breathing. Except when he took the stickers off to put me in the MRI machine for 90 minutes. All the time I kept saying to myself better me than one of my kids.

This is how I remember the EMG doctor
If you're reading this you probably don't know what an EMG test is.  You really shouldn't. It's a test used to determine how much of your nerves actually exist. They test the electrical conductivity of your nerves. For the first half of the test they shove a small tuning fork like device into the softest parts of your flesh and then put electricity through it so they can see how it comes out on the other side of your limbs.  When the doctor did the last one, he put the probe in the soft part in the joint of the knee. Then he said when I tell you to grit your teeth and make a fist. But I said I can't make a fist so he quickly did it anyway and I didn't just see stars the world went white for about five seconds.  Then the fun started, they had to go under my skin with electricity. He used pins.  Not little acupuncture pins, but two inch long pins that they had to stick into my skin and wiggle around until they found my nerves. Then they turned the electricity on.  Oh, one more thing, This all happened the first hot day in May before they turned on the air conditioning in the hospital. The whole time the doctor was dripping with wet as he sat over me. I confuse my memory of the doctor with this image from Indiana Jones.    Still, better me than one of my kids.  When I was in rehab they told me they were going to do another EMG test. The staff psychiatrist came in right away and told me she would spend some time with me later to help me prepare for this test. A half hour later they came to get me for the test. No preparation. When they did the third one I didn't give a shit anymore. But I did ask that doctor how he did it to children. He smiled and said I don't want to talk about. (I just sent an email to my neurologist asking, yes asking for another EMG test. FML)

Central line, installed.
Then I had a relapse. I had to go from rehab back to the hospital. Better me than one of my kids.  They said instead of just giving me injections of stuff, they were going to filter my blood. To do this they needed to install a central line. I had no idea what that meant. When I heard them say carotid artery I was not happy. I had to spend five days like this. 

I just kept thinking about deal I made with the devil. In some parallel universe that really didn't exist one of my kids or my wife had these things sticking out of the side of their neck for five days.

Then I went back to therapy for a few weeks and had another relapse. They changed my diagnosis. It was no longer the rare, but eventually you will get better, Guillain-Barre Syndrome.  Now I had the super rare Chronic Inflammatory Demyelinating Polyneuropathy.  Fuck, I got something with the words chronic and poly in it.  And after the second relapse they decided to try chemotherapy. They really made that scary, but I had no side effects.  The only thing that could be worse if it was my wife or kids.

So for 135 days my wife and kids visited me in the hospital. The only thing worse is if I would've been visiting them.

Well, now I've been home over six months. I don't want to sound like an ass hole, but I'm really glad this didn't happen to my wife. Because I really don't think I could take of her as well as she's been taking care of me. 

Also, I might not be the dad who will run 30 more marathons, but I will be the dad who will show his kids how he can climb out of a really deep hole. 

And I will also be the child that will show his parents he will get better

Tuesday, March 17, 2015

Shit people say that actually made me feel better

I'm not like everybody else, a lot of people say things to me that they think will make me feel better, but they don't.  Here is the list of things I don't need to hear.

I thought I should complement this list by making a list of things that did make me feel better.  I'll keep updating the list as people keep making me feel better.

Hugs help. Smiles help. Babies help

Facebook helps. Really, Getting a few hundred likes when I simply post a picture of the fact that I could walk does encourage me. Thank you

I've often found myself trying to cheer people up who were talking to me. Sometimes I look up and say, "I won the bad lottery." Sometimes I just smiled to myself think of how my cousin Barry responded to that. He said, "No, you just got five out of nine numbers."  

Visits in general really made me happy.  It really does help if you just have lunch with me, or just spend a half hour with me and walk back and forth in the hallway.   Thinking back to my time in the hospital, it really meant a lot when people stop by on the way home from work, or even at the end of a run that showed up all sweaty. It meant a lot to me when people came from far away just to spend some time with me.

I'm sure will be more to come so I will keep expanding this list... ....

Monday, March 16, 2015

Shit people say to someone who has recently suffered a life changing illness (updated 3-16)

Update, March 16, 2015: 

The worst thing you can do if you see someone you think you know and suddenly in a wheelchair is  to look away.  Yeah, I'm the guy who helped to you unload a truck at the food co-op, or I might be the guy you ran all of the Park with, or I might be the guy who just cheered for you when you ran a race. I am still the same guy!!! You can say hello!!!

I know a lot of you people might be shocked to see me in a wheelchair.  But please engage the brain before you open your mouth
- Well, this might not have happened to you if you didn't push yourself so hard with all that running
Actually I probably would have been a lot worse off or even dead if I wasn't fit when this happen to me.

- Is disability temporary or permanent?
It depends how long I live and go fuck yourself.

- I know someone who has something like what you have.
No you don't, you don't even know what I have.

- I just remembered another one. When I was in the hospital and couldn't get out of bed people asked me if the nurses who bathed were hot.
I honestly didn't think of that until people asked. But it did make me wonder if their moms were hot. 

Okay, The crap above represent shit that came out of peoples mouths who knew me. Below is the shit people say to be to a stranger
I'll pray for you
Really, which God?  The God that put me in this chair or the God that you gonna pray to that will take me out.  I think it's pathetic that these believers assume I'm one of them but I've learned to just say thank you.

Everything happens for a reason
I don't even know if this can possibly mean. And my being punished? Am I suffering because of the fact that someone else got lucky?  Do they think that they has to be some sort of balance in the world and I need to be on the bottom put them on the top? So I just roll my eyes and ask someone to push me away from that person.

I'll add more as people say more shit to me.  Or you could leave your stupid shit n the comments.


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