Obesity Dilemma

Obesity is a problem in America, we all know this. What's scary is the rate at which the problem is increasing. In 1990 there were no states in America where the rate of obesity was higher then 19%. Just 30 years later all 50 states have obesity rates that exceed 20%. What do we need to change to get American back on track to a healthier lifestyle?

Life Lived Boldly

This morning I woke up from a dream and I was afraid! In the dream I was dying from some rare and incurable disease (ironic right) and I, upon waking, could clearly remember being afraid of death. Once awake though I was no longer afraid. In my waking life I do not fear death because I realize in my weakness (through faith) that there is nothing to fear in death.

One of my favorite quotes about Death comes from Socrates who wrote, “To fear death, gentlemen, is no other than to think oneself wise when one is not, to think one knows what one does not know. No one knows whether death may not be the greatest of all blessings for a man, yet men fear it as if they knew that it is the greatest of evils."

It is sad but true that many of us make decisions in our life based on our fears. People get married to the wrong people because they are afraid of being alone. People turn down new opportunities because they are afraid of the unknown. To often we play it safe because the other option involves risk or change and it scares us. 

The thing is though, life is not a dream. It must be lived boldly. We must take chances or we risk  waking up at the end of our life finding we have wasted it all. Now that would be a nightmare.

Happy?

I wrote a post this week in which I expressed lots of joy after purchasing my new 2014 planner. I also in the same week expressed how much fun I had at a church meeting that was almost four hours long. Since those post's it has been suggested by a few people that perhaps my idea of fun is a little off.

This is of course possible. Who knows, perhaps my medicine is effecting me in some strange way! It is possible that I have suffered some sort of mental collapse that causes all previously mundane tasks to now be fun (what a great side effect that would be right). Unfortunately I doubt this new found joy in previously mundane tasks is mental health related. I offer as proof the fact that I still dislike unloading the dishwasher, ironing, and taking out the recycling.

So if mental decline is not the "issue" then what is?

My "issue" is of course perspective. Having a new planner means that one has lived another year! Writing stuff in it means one sees themselves as having a future. Being able to attend a meeting means one has strength and cerebral focus.

Too many of us spend our whole lives not realizing how blessed we are. You woke up today, alleluia! You hugged your child, amazing! You shared a meal with someone you cared about, fantastic! Happiness is happening right now, all around you. Don't miss it.

Illusion of Control

I bought my 2014 Monthly/Weekly Planner today (cue chorus of heavenly angels). I love it! There is something very satisfying with having the whole year mapped out in detail. This is no small task by the way because my calendar needs to have all NYC Department of Education Events, all First United Presbyterian Church of Queens Village Events, Weddings, and all Family Events. It took me over two hours just to move everything from last years calendar over.

The planner feels even more important to me this year. I think I find the illusion of control comforting. As if by writing it down I guarantee that I will be healthy and able to attend all these events. I mean I have committed to them right!

I was speaking with someone today who is struggling with their Erdheim-Chester Disease diagnosis and it occurred to me that what makes this disease hard to live with is that it destroys the illusion that we control our lives. Prior to ECD I would take my Monthly/Weekly Planner and map out my future with as much faith that the events written would happen as I am faithful that the sun will rise tomorrow.

Now...I am certain of nothing the future holds except my wife's love, the support of my family, and my trust is a really Big God. Have you ever noticed that letting go is one of the hardest thing to do?

Being Present

I had a really great meeting at church yesterday (said no one ever). Except it's true, I did really have a great meeting at church yesterday. We were working on our plan for mission giving, 2014 Calendar, and preparing for the the once a year congregational meeting. The last half of 2013 had been a little bit of a disaster (what with me being sick and all), so it was important to me that we move forward into 2014 with a clear path set.

The meeting started at 7:00 and went to 10:30, which made for a long day. Fact is I didn't notice. I was having fun. I really enjoy being a Pastor (it is such a source of joy and energy for me). I loved watching the excitement of the leaders in our church. I was moved by their willingness to stretch when committing to funding missions in the coming year. We have decided to double our missions budget in the coming year! We're putting our faith in God to lead us and I find that very exciting!

Jim Elliot (author of the quote above) was an evangelical Christian who committed himself to spreading the word of God in Ecuador, a cause that cost him his life. Unfortunately so many people of faith today find themselves committed to nothing but a superficial relationship with God and their church. We are called to so much more then that. Wherever you are - Be all there.

NIH on My Mind

I find myself incredibly focused on my upcoming visit to the National Institutes of Health. This Christmas break we got the last of my medical records sent out. We also sent in all our information to the travel coordinator at the NIH (they pay for the trip there and back for me and a companion). I will be "hospitalized" on campus for a week while they run a long series of exams and tests. In between scheduled appointments I will be returned to my hospital room to eat and rest, but the word is that the testing regiment is very intensive and it leaves little time for rest.

I am focused on the trip because of two things.

First, it is during this trip that I will receive my second full body PET Scan. That data will be used (in the weeks following the exam by my doctor at John Hopkins) to evaluate whether or not the treatment regiment I am on is working or not.

Second, I am hoping that as part of this series of tests I might gain some insight into why I am struggling so much with my weight. I have lots of theories but would love to add some more facts to the mix.

While I am in the hospital my father will stay at the Edmond J. Safra Family Lodge on the NIH's property (shown below).

Hardly a fun visit for him, but i am incredibly grateful that my parents are coming out east to help. I will rest better knowing my Mom is with DawnMarie and my father is with me, should anything new come up (he is always very measured and rational).

Until then I am going to try to focus on the here and now and let what will be settle itself in February. Have you ever noticed that the future can sometimes loom very large?

Grand Canyon

I think one of the things I am going to do this year is put together an actual "bucket list". I have some notion of a few things I would like to do. For instance I would like to camp/raft the Grand Canyon with my son and father (take my wife to Hawaii and the kids on an Alaskan Cruise).

While I have visited 49 of the 50 states, I still haven't been to the Grand Canyon. I feel a sort of reverence for this wonderful site that precludes me from doing a quick look in and leave sort of trip. I want to go and really experience the Canyon. So when I came across this video from the end of November I was enthralled. It turns out on November 29th the Grand Canyon experienced a rare temperature inversion where cool air began to rise from the bottom of the canyon and the canyon filled with fog.   

The attached stop motion video demonstrates this rarely captured change in weather at the Grand Canyon and I think shows you why I love this Canyon so much. 

I do wonder though if a bucket list filled with grand adventures is really the best way to go about doing things, perhaps I need to spend some time filing the bucket with small yet meaningful events as well. Just a thought. I'll let you know what I decide after I finish writing up my list. Until then please add your ideas to the list on my FB page or add your comment here.

Everything is Incredible

This is the story of Agustin a "crazy old man" with polio who has been building a helicopter in his house for the last fifty years. The story on its own is interesting and certainly worth the ten minute watch but its because of something he said in the documentary that I bring it to you. Agustin said, " the problem is that everything is incredible and people don’t accept it." Everything is incredible and people don't accept it.

Watching the video you are tempted to judge Agustin's life. The more you watch though the more clear it becomes that his dream of flight (as crazy as it seems) has brought Agustin great joy. Who are we to rob someone of their joy or question the reality of their joy?

When I found out I had ECD and that most people who got the disease died within 5 years it focused me. I have come to see, as Augustin does, the incredible in so many things. The joy of holding my wife's hand, cuddling with the kids, or just enjoying the silence of the moment has at times felt overwhelmingly heavy in meaning.

Everything is Incredible, if you choose to let it be.

Broken Spirit

I had an epiphany today that the reason I am rocking in my bed with my stomach reeling, my back throbbing, and my hips hurting is because God hates me!

You see, I went out to dinner tonight with friends and tried to be normal. I ordered the chicken souvlaki and fries (not smart). I know I should have had a green salad, but I desperately desired a brief visit with the life I have had to give up. I wanted, if just for a few minutes to be normal like everyone else sitting in the diner. Damn Pride.

It sucks when everything is moving along fine and then it all crashes, again. And the worst part is that I want to climb into my bed and give up,  I don't want to start over and try again, but I have to.

I am a broken spirit, broken by God. Broken not because he hates me but because he loves me enough to destroy my pride and arrogance then rebuild me.

I must learn to accept my limitations as life long, non-negotiable standards. It is the only way I am going to survive this disease with any quality of life at all. 

 

Will it work?

I like to live my life with a clearly defined path. I like to gather all the facts I can before I make any decisions and then act only after carefully considering the options.  This makes living with Erdheim-Chester Disease difficult. The lack of data and the ill defined courses of treatment available are maddening for someone like me.

With most cancers for instance there is a well defined course of treatment. This means when you are diagnosed you immediately start at step one of whatever the per-approved treatment regiment is for your disease (one would also hope this means you have little trouble from your insurance company as well).

With ECD the doctors can't agree if it is a slow moving form of cancer or an auto immune disease or perhaps something else. There is certainly no single approved course of treatment (my doctor prefers kineret over interferon based solely on anecdotal evidence) and don't even get me started with how the insurance company responds (by denying everything and hoping you will go away).

The way I cope with this is by obsessively review the ECD website and FB page to see how others with the disease are doing. Every time I hear that a persons receiving treatment with kineret, interferon, zelboraf, or something else isn't working my heart breaks. I found out today that someone we know who has been on zelboraf just got their first set of scans back and it showed no progress against the disease.

It breaks my heart to hear this because this is a small community and I know these people but it also scares me because these are the same drugs we all have to rely on. If it doesn't work for them then how is it supposed to work for others?

Will it work for me?

Four weeks until I find out if the daily shots of Kineret have worked. Scared and wishing we knew more, pray for me.

 

Weight Problems

I am still struggling with my weight. I haven't mentioned it lately because honestly most people are trying to lose weight and here I am fighting to gain it. Plus I felt with the addition of the Natural Doctor things were heading in a positive direction. Unfortunatley after a week of eating scoops of peanut butter a day, lots of granola, crackers with hummus, ice cream (that ended up being a bad idea), and a tasty corn fritter, on top of already having pushed my calories up...I still lost weight.

In October I was only eating 1200 calories a day and I lost 5.2 lbs. In November I was eating 1600 calories a day and I lost 5.3 lbs. In December I ate 1800 calories a day for two weeks, then over 2000 calories a day for the next two weeks and I lost 5.5 lbs. That time period included me being on vacation which meant I worked less and I ate more, plus I went to a few parties where I took a pain pill and just went hog wild.

You see the trend? The more I eat the more weight I lose! So today I step on the scale after my weight had been steady for a few days...I have to admit I was feeling hopeful that all the forced eating of peanut butter was paying off and I was 146.2 lbs. Are you freaking kidding me! I just bought a suit, blazer, and slacks. I am tired of buying new smaller clothes. In fact if this keeps up I am going to have to go buy my pants in the boys section (unless you know of a store that sells a 28 waist in the men's section).

I'm not depressed. In fact I'm not sure there are even words for how I am feeling. You see when you work so hard to achieve a goal and fail its disheartening. When the goal you fail to achieve is the difference between a long healthy life and the alternative then in that situation failing is...hard to comprehend.

What is there to do but keep trying and I will. 

The Dairy Dilemma

Dr. Zigo (the Natural Doctor) would like me to cut back on dairy (in fact she would prefer that I didn't eat any dairy products at all). Now folks that's just crazy talk. I love cheese! I love ice cream! In fact this summer when I was on vacation in Washington State I drove 4 hours to go on a tour of a cheese factory in Oregon State. Never mind the fact that I was so sick in August that I couldn't even eat any, I just went so I could see the kids enjoying fresh ice cream. 

Tillamook Cheese Factory, Oregon. August 2013

Fact is that my love of all things dairy is so well established that my brother sent us a Tillamook cheese sampler for Christmas.

Best gift ever!

I have heard it said in the past that there is no reason for adults to consume dairy products. In fact studies show that countries which use dairy products as their primary source of calcium have higher rates of osteoporosis then those that get their calcium from plant based sources (crazy right). Also dairy is filled with hormones, pesticides, and is mucus forming (which is bad I guess). Honestly though...who cares right! It tastes good!

Here is the thing though, I have noticed because of my dietary tracking that I can sometimes correlate the pain I am experiencing with the dairy product I am eating. Some dairy products seem to be causing me to have pain, yet I still continue to eat them.

A dilemma is described as a problem offering two possibilities, neither of which is practically acceptable. So here I sit at the horns of a dilemma. I love dairy and can't imagine living without its tasty goodness as a part of my life yet I am also a weenie and would like to avoid unnecessary pain.

The logical conclusion is to cut out dairy, but I think living life well requires one to live passionately. So don't you worry dairy...I will fight to keep you apart of my life (said the dumb guy in the corner doubled over in pain).

Think About It

Dominique Ansel the pastry chef and creator of the Cronut (an amazingly tasty cross between a croissant and a doughnut) caught my attention when I made an early morning pilgrimage into the city yesterday to pick up a few special treats for the kids and an amazing cake for the New Years Eve party we were attending.

Dominique is the tall man in the center of the photo.

Here in this picture you can see him working with his staff in the small front kitchen. The whole time I was there they were slammed, in fact he line went down the block and around the corner. The thing is that the whole time I was there he was also smiling! The man was clearly enjoying himself as he shelled out tasty treats to the citizens of the world (seriously the people around me in line were from like 5 countries).

How lucky of him to have come across such fame and fortune right. I mean the Wall Street Journal named the word Cronut one the top new words in 2013, US Weekly said the Cronut was one of the defining moments of the year, and Mr. and Mrs. Zagat (who knew they were real people) toasted the new year with Champagne and a Cronut. What luck!

Except it wasn't luck. Chef Dominique Ansel was classically trained and worked his way up through many of the finest kitchens in the world before opening his own Bakery in NY (read he worked hard for many decades). Then taking 2 months and more than 10 recipes, he invented the Cronut. Made with a laminated dough which has been likened to a croissant (but uses a proprietary recipe), the Cronut is first proofed and then fried in grapeseed oil. Cronuts are made fresh daily, and completely done in house. In fact the entire process takes up to 3 days.

You see success doesn't come because of luck.

Achieving a successful life takes hard work. Fame and Fortune take harder work. What are you willing to work hard for in 2014? Think about it.