Crossroads…

cropped-cropped-lonely-man-by-the-bed1.jpgThe reason I named this blog as I did is that through my life I have been known to push through obstacles, illness and otherwise, and trudge on. My friends and family nicknamed me Superman because I seemed invincible despite everything that was thrown at me. It wasn’t always a compliment, in fact, it was sometimes a snarky shot meaning that I didn’t listen to common sense advice and other earthly notions. That I felt bulletproof. To be fair, they weren’t wrong. But that’s how I deal with things. It runs in my family. It is a good and a bad thing.

Putting on a good face presents well. I may have been sad and sick on the inside but I’m always going to tell you that I’m fine. My doctors gave me hell, told me that I wasn’t taking my illness seriously. I told them to leave me alone, I’m taking my meds and following your orders. You’re just asking me to act sick and I won’t do that. Right up to my transplant I pushed my luck, fought through the symptoms and feigned good health. I like to think that I spared my children from worry. Youth is hard enough without a sick father to worry about.

The downside of putting on a good face is that when the hammer falls it is more of a surprise to those close to you. Something that has been at the back of my mind all along is suddenly at the forefront of theirs. Word spread and the unthinkable happened, people starting feeling bad for me. The exact reason I didn’t make a big deal out of my illness. I hated how the first question people always asked is “how are you feeling?”

I suppose that I always thought there would be a cure. I woke each day hoping that something good was happening in some lab somewhere that was going to keep me off of dialysis. This strategy, regardless of how well it worked for me, was classic denial. I called it thinking positive.

What is so bad about positive thinking? It worked wonders for me. When I visited my Dr’s office I saw a lot of sick people. They didn’t see that when they saw me. I was working out, I was strong, my weight was under control and I walked with my characteristic “rooster strut” (courtesy of my wife, once again not a compliment). I refused to act like a sick person. I was actually told that I was an “inspiration” by a fellow patient. This mentality sustained me until the big day.

Post-transplant I thrived. I virtually ran out of that hospital determined to get my strength back and to make the most of the 15-20 years of good health my new kidney would give me if I took care of it. I bought a mountain bike, I went hiking, I hit the gym and I spent a lot of time outside with the kids to make up for the times that I sat on the sofa watching them play because I was too fatigued to join them. I had proved them all wrong, it was possible to positively think your way to good health. Even my doctors agreed that my way of dealing with it kept me strong enough to breeze through a difficult surgery and complex recovery like a warm knife through butter. I had vanquished the haters.

Then I rejected 4 1/2 years later. Almost overnight I went from feeling like Atlas to a 95-pound weakling. My bubble had burst. What I hadn’t been told is that the disease that had destroyed my original kidneys had could come back. And it did. I was mad as hell, how could they have not told me of this possibility?

Last week I went to see my nephrologist. My overall function is now 30%. In 2 years I have lost about 75% of my kidney function. I had absolutely no idea it was progressing that fast. I’m pissed, concerned and full of doubts right now of what my future holds, in particular, how long will I have what I consider “quality of life”?

I need to find that positivity again. Fast. Maybe even a little of that Superman. I liked it much better when everyone but me knew that I was sick.

an attempt at satire

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Imagine the country is a woman who belongs to a country club. And she receives a letter informing her that she is banned. Feedback welcome

Dear Madame Blue:

It is with great sorrow that I inform you that the party is almost over, that you are no longer the “it girl”.

When you first burst upon the scene, all of the old folks in the room took notice. The way in which you achieved your social status captured the attention of all of us. You were admired for your bravery, tenacity, individuality and of course your independence.

We all wanted to get to know you, to learn your secrets. Not everyone could do what you did. Some of us, admittedly approached you for their own benefit. It happens when you are on top. But you were gracious, you admitted that you were young and that you would make mistakes. You went so far as to put in on paper how committed you were to your beliefs. You even allowed for it to be amended. What an original concept!

You were interesting, exciting and full of new possibilities. We all wanted something from you. You obliged most of us, but insisted that you would help if your best interests were considered. Most of us found that to be fair. Those that didn’t kept quiet about it.

For a decent amount of time you did a good job of keeping your own house in order. We were all impressed at what you could do at such a young age. You kept an eye on what others in the room were doing but largely minded your own business. You were peaceful but strong.

Then the fighting started. Your house became divided and after much terrible fighting you almost split  in two. We watched to see how you would handle it. Your house stood after all, but it wasn’t the same. Bitterness and divisiveness prevailed.

When all of us got into a major ordeal, you picked the side you most agreed with and got involved. Your resources were a major part in ending a major dispute. It ended badly. Unable to reconcile, we got into another huge ordeal a mere 21 years later. Once again you picked the side you most agreed with and pitched in. Your resolve was amazing and appreciated. Most of us thanked you, the losers licked their wounds privately.

Then you changed. You began to meddle in the business of others. You were less discriminate in who you did business with and picked some fights that really weren’t yours. You meant well but didn’t think your actions through and you suffered some real embarressments and losses. And your family was torn by them. We began to resent you. The infighting in your family continues to this day yet you continue to focus on everyone in this room.

Madame Blue, there was a time when a single word from you would turn our heads and silence the room. Now, you have become a cautionary tale. Your family is struggling and needs you and you are not paying attention. You are not rewarding those that have worked hard and inviting the wrong people into your home. You are not listening to the ones that love you. You don’t even know that when you are not looking we are poking fun at you. Sure, some of us are nice to your face because we want something from you. But we used to look to you for leadership, for the better way to do things. Now you are a reality show. And your ratings are plummeting.

You once had so much potential, your accomplishments admirable and your endorsement invaluable. Please don’t squander what influence you have left by destroying your own house. Lead by example, take care of your family and be the beacon we all thought you to be. Be as good of a citizen as you are a warrior. There is still time and we need you in our club. The old you. You used to be great and can be again.

But until that time, we’d rather you stay away for a while. At least until your house in order.

With regrets,

The Rest of the World

The ride of, or for, my life…

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frus·tra·tion

frəˈstrāSH(ə)n/

noun

  1. the feeling of being upset or annoyed, especially because of inability to change or achieve something.

“I sometimes feel like screaming with frustration”

synonyms: exasperation, annoyance, anger, vexation, irritation

Yes, that is one definition. Here is another.

When you think you are all set with something for a while and you then find out you are not.

MY Synonyms: annoyed, pissed off, here we go again

Almost six years ago I had a kidney transplant. Truly a landmark moment in my life. A future of dialysis and a poor quality of life magically transformed into a bright future with at least 15 years of good health through one amazing gift from one amazing person. It was up to me to take care of the new kidney. To diligently take my medications, eat healthily and listen to my doctor. In addition, my donor was a friend and I further owed it to her to take care of her gift.

I looked forward to 15 years (or more) of good health and I was committed to taking care of it. I hit the gym, I started mountain biking, I ate right and watched my weight. Imagine my disappointment when 4 years later I had a rejection episode. My body will always try to reject the new organ so I take a lot of meds to suppress my immune system. Yet I ended up in the hospital with a severe loss of kidney function. Over the next 3 months, extensive testing will reveal that the original disease that destroyed my original kidneys had returned. The kicker was the Transplant team didn’t feel it necessary to tell me about this possibility. I was pissed. My prognosis was, while uncertain when, my new kidney would eventually fail to the point that I will be back where I was pre-transplant. That was not a good place.

Kidney disease has a wide array of unpredictable and unpleasant symptoms. Besides feeling “washed out” it is not uncommon to develop intolerances to everyday foods that generally would be considered healthy. Cramping, seizures, even cardiac events are possible when in failure if not monitored. As I progressed towards transplant before I developed anemia. I was cold all of the time. I required injections and a multitude of pills that would block this and one that would boost the other. Back and forth to the pharmacy and specialists. It was a roller coaster I was hoping not to ride for a long while.

This July I was told to expect the ride to begin soon.

I got my lab results back today. I’m anemic. Yay.Time to strap in because it’s going to be a long ride.

wheeeeeeeeeeeeeeeeeee!

Day 5 of the 30-day challenge…letter to a celebrity I admire

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To the Celebrity I admire:

Webster’s lesser definition of the word celebrity defines it as “the state of being well-known.” One can be well-known for a lot of reasons, there is Charles Manson as well as Casey Anthony celebrity. But being known is what really matters, and all of the power that comes with it.

What power you ask? A celebrity like Lamar Odom can get a kidney transplant immediately after destroying his body with drugs and prostitutes. But he’s well known so let’s bump his transplant up over Joe the electrician who has been waiting for a new lease on life for 6 years. Fuck him, he’s not famous.

You’re not like that. You’re one of the good ones.

  • You wait your turn in line, you don’t cut in front of others because your time is more important than everyone else’s.
  • You don’t yell at Cops and Firefighters and Maitre D’s etc. “do you know who I am!” when you can’t park in a fire lane or your table isn’t ready.
  • You don’t spout your politics because you know that Hollywood is a bubble and has no clue what the people who pay exorbitant prices for their products do to earn that money. You know what the average guy stands for and wouldn’t insult your audience.
  • You don’t lecture us on our “carbon footprint” from your private jet. You recognize the hypocrisy in that.
  • You have a gate around your property so you know better than to talk about open borders. 
  • You walk the streets among us because you are one of us. You don’t need a security detail.
  • You would gladly walk away from fame because it’s not that important to you, being a good person is.
  • You know that just because you sing, dance, act, rap, paint, shop, act like a desperate housewive or try to win at Big Brother…it doesn’t make you an expert on everything.
  • You manage to stay grounded even though everyone knows your name.

I would write that name on this letter but to my knowledge, I have no idea who you are. You don’t exist.

I fucking hate celebrities. I can safely say this without repercussion because hey, I’m not famous.

With distaste and disdain,

The Regular Schmuck