Managing Care

When I was a kid I got all my healthcare done a Group Health. This health care provider had your primary doctor take care of all aspects of your medical care. If you wanted to see a specialist your primary would consult with you first then set up the appointment if it was needed. I can even remember going to their "emergency room" for stomach pain and once I was diagnosed as needing an appendectomy being transferred to the hospital.

20 years later I am the master of my own medical destiny. If I want to see a specialist I just call up and get an appointment. If I want to see a natural doctor in Connecticut I can, and I do (by the way BCBS covers the cost). If I want to go to John Hopkins to see a specialist I can, and I do. I try to pop in now and again to keep my primary care physician updated, but not as much as I should. So right now I have three doctors helping me and none of them talk to each other.

That is a big problem. It makes me wonder who exactly is managing my care?

I am. That's scary!

I need to find a way to address this problem so that a qualified medical expert is in the loop with all my medical details, in contact with everyone, and helping me to manage my care.

Low T

So as part of the testing process at the NIH they discovered that my testosterone level is low (which is apparently common for men who have ECD). I have been tested for my testosterone levels before but the number were previously in range. My Testosterone level was 153, the normal range is 348-1197. I must admit I was suprised because I wasn't aware that I was experiencing any symptoms of low T.

At least that is what I though, turns out I just wasn't aware of what the symptoms are.

1) Fatigue and energy level decline, yup I got that. The first thing I do when I get home every day is rest.

2) Difficulty concentrating, there are times were it seems impossible to concentrate. Tonight for instance DawnMarie left me with a long questionnaire to fill out for a medical study and I just couldn't do it.

3) Irratibiliy, this has certainly been a significant issue for me over the last few months. I have a tendency to snap at my family then be "fine" just a few moments later.

Whats funny is I thought these were all side effects of having ECD. It makes me hope that once all my ancillary health problems are addressed that I might find the issues related to living with ECD are mild and manageable.

One can always hope.

My week at the NIH

I was very nervous before I went to the NIH last week because there was so much about the trip that I did not understand. To help alleviate the fears of others I am going to briefly describe the week for you.

First thing you need to know is that the Study of ECD at the NIH is a Natural History (NH) study. NH studies are an important tool for understanding the cause, range of manifestations, and progression of rare diseases. This study is for improving the medical communities understanding of ECD, it is not going to fix you. They do not have a secret drug at the NIH that is going to make your ECD go away.

Second thing you need to know is that the NIH covers your travel expenses (airfare and hotel room for the week for you and one other person). They make sure you have a taxi from the airport and they prepay the driver. If money is tight don't worry they even give a meal voucher for the person you bring with you (I think it was $180).

Third thing you need to know is that Dr. Estrada and Kevin O'Brien are a great team. They were in and out of my room (more about that next) at least four times a day. Each time they discussed what the tests I had taken were showing, what things we had ruled out, and what more we needed to do to continue to narrow things down.

Dr. Estrada-Veras, Me, PA O'Brien

I came to the NIH unaware of my significant immune deficiences, my low testosterone levels, and with real weight loss issues. They spent five days trying to figure out the reasons for these issues and how we might be able to address them. 

Fourth thing is your room. It is a hospital room. Imagine all those times you have visited people at the hospital but at this hospital most people were mobile and did not require acute care. I saw the nurses three times a day for my blood pressure, temp., and pulse oxygen level (I never had my sleep interrupted). They also came around to remind me of my appointments and to give me my medication.

Fifth thing is your going to be busy!!!! Seriously, I am in decent health and I found the testing regiment to be exhausting. I could have returned to the hotel every night that they got for my Dad but I was so tired that I just stayed at the NIH.

Sixth the week will put you in contact with more specialists (that are all top doctors) then you could see in a years worth of independently scheduled visits. The benefit of this was I have a much clearer understanding of how I need to proceed forward to best manage my health care.

Seventh thing your caregiver/spouse/friend needs to know is that they will spend hours waiting. I would suggest they bring a book, video games, magazines, etc. Once your ECD patient goes in for the test (MRI, CT Scan, Pet Scan) you just don't always know how long it is going to take.

Eighth thing is a suggestion. Gentlemen (if your hairy) shave before you go! I ended up having patches of chest hair removed in 8 spots for leads. If I had know I would have done it myself ahead of time. I did prep my arms which ended up seeing quite a few IV's.

Ninth and final thing is the food is pretty good. I have some serious food issues and even I found the menu to be nice. There were certainly many option both healthy and not. You might want to bring a few snacks with you or order extra food at meal time to set aside though because you may get hungry between meals.

Finally, I am certain I have left something important out, so if you have any questions please send me a note and I will do my best to answer. If you have ECD and have not contacted Dr. Estrada yet stop stalling and pick up the phone you will not regret it.

Good News and Bad News

The NIH was great, it represented a very holistic approach to my health. The scans found that the ECD was also in my testis (awkward), which I did not know before. However, it appears that this is common for men with the disease and it does not indicate the disease is spreading.

They found no ECD in my heart, lungs, brain, or behind my eyes. I seem to have no neurological involvement at all, which is great news of course. They also believe that the Kineret has been working and the spread of the ECD has been halted, even pulled back some in a few areas. My dental, optometry, and pulmonary function tests all came back with good results.

I now know that I do not have celiac disease, I am not lactose intolerant, and I do not have an overly active metabolism (my BMR is 1600). I have been tested for and cleared of having more rare blood disorders then I can actually remember, and I have had the privileged of spending hours with a top notch nutrition and immunology team.

The bad news. My Immune response is so low it is unreadable on the lab test. I have Pancytopenia (low red blood cell count, low white blood cell count, low platelets). I have Neutropenia and Lymphopenia (both are related to my poorly operating immune system). My testosterone level is low, I am anemic, and I have splenic vein thrombosis.  

The doctors ran out of time (in fact we are leaving the NIH with the results of many tests not back yet) but they suggested I continue to work on figuring out my coagulation profile. They suggested I continue to see a nutritionist, that I work on reintroducing foods that had previously caused me pain when eating back into my diet, and that I no longer engage in contact sports (seriously he said don't even wrestle with the kids).

Finally, the doctors suggested I add the histio group from Memorial Sloan Kettering Cancer Center to my health care team.

Overall good trip. The news is not all good but you know what they say, knowledge is power.

whatyoutalkingabout

I like to think about myself as a tough guy. Not the whatyoutalkingabout, gtl (gym,tan,laundry), New Jersey guido type, but the I don't let little things get me down type. I deal with my legs and hips hurting every day, I accept the bouts of insomnia that come for no reason, I live with decreased energy, I roll with food limitations, and unexplained problems. I don't complain. Why? This is my life. 

No matter how I feel about it this is the life I have. So the way I see it there's no point moping around wishing it was something else. I have Erdheim-Chester Disease and all the "fun" quirks that it brings. This is my life.  I think I have a pretty good attitude about the whole thing. Which I assume is born out of common sense and a good upbringing.

My father taught me that there is not point complaining about things we cannot control. Here he is sitting in the waiting room while I was getting my first MRI (I ended up having three). I think he ended up spending about 30 hours sitting in waiting rooms and another 40 hours waiting by my hospital bed. Did he complain? Only once and that was because he couldn't find a place to get oatmeal (its always the little things right).

I am constantly telling my kids (at home and at work) that life is not fair, but the truth is this is a hard concept for a child to understand. My children's school supports this concept by teaching them the saying, "you get what you get and you don't get upset". They can say it but they don't get it. They don't yet understand the cruelties of life that we all must accept and live with (thank God).

Perhaps you have to live through life beating you up a little to understand that life's not fair and that's okay. I hope though that when my kids find life has been knocking them around they'll look around and find me...sitting there for them.

God bless you all and have a good night.

NIH - Post 1

I find myself sitting in my hospital room waiting for one last test them I will go to my medical debrief and this trip will be done. I'm not sure that anything earth shattering has come out of this week, but I do now know lots more then when I arrived. 

The reason I have come to the NIH is because they are running a study on people with Erdheim-Chester Disease. The benefit for them is they get my medical information and through their tests will come to understand more about the disease, it process, and the value of the available treatment options. The benefit for me is that I have had a whole hospital full of medical detectives trying to figure out why I have pain, why I am loosing weight, why my immune system is so compromised, etc.

One of my doctors here said, "at the NIH rare is normal and normal is rare". It has been nice to be somewhere for a week where because of the rarity of my disease I am "normal". The staff here is wonderful, the campus is beautiful (plus I got out of having to shovel snow during the storm), even the food was good. As nice as it is here, I am ready to go home.

The Cost of Food - Poverty

 Brad is at the NIH all week. He prepared these thoughts prior to his departure. 

Previously I wrote "The Cost of Food" linked here. Where I explored the reasons why my family switched to a much healthier diet of fresh fruits, vegetables, and whole foods. Then while pondering why everyone doesn't eat like this three things came to my mind that I wanted to explore further and they are convenience, ability, and poverty.

Poverty has a huge impact on ones health, this has been established.We know that people who live in low income communities have higher rates of diabetes, heart attacks, and struggle more with obesity. We also know that there is less access to whole foods (including fresh fruits and vegetables) in these same communities as well.

I mentioned in my first post in this series that I was finding the cost of food to be very expensive. Even though I was budgeting more money for food now then when I went out to eat all the time I was finding the cost of whole food to be very high. The thing is I have to have them! I am fighting with my body just to maintain my weight. Without fresh fruits, vegetables, whole grains, and other whole foods I would have to be eating processed foods that cause me to have a myriad of other health issues (mostly related to pain).

A recent article (link) on this issue written by Hilary Seligman, found that people who were living paycheck-to-paycheck were sometimes running out of money and having to cut back on food. This results in a spike in hospital visits and hospitalization at the end of the month.Why though?

If they have diabetes for instance this lack of money for food could cause you to eat food that was not good for you but was cheap, the result being low blood sugar and a surge of hypoglycemia cases at the end of each month. That's what researchers found when they looked at the numbers for California between 2000 and 2008. Low-income people were 27 percent more likely to be hospitalized for hypoglycemia in the last week of the month than in the first. It turns out the more research they did the more spikes in hospitalizations were found that were related to poor nutrition.

What's the solution? I'm sure a good solution would involve policy changes, addressing social health issues, and local support networks. Since we can't count on congress to do anything why don't we help out locally. Local support networks like food banks, church food closets, and direct person to person intervention are real and tangible ways we can get involved in improving someon's life. So do me a favor...the next time your contributing to a food drive don't hand in your pantry leftovers but instead give good wholesome foods. Who knows it may save someone's life.

The Cost of Food - Ability

Previously I wrote "The Cost of Food" linked here. Where I explored the reasons why my family switched to a much healthier diet of fresh fruits, vegetables, and whole foods. Today I want to look at ability/knowledge as a hindrance to eating healthy. The article below explains the issue far better then I could and its a fun read.

Bring Back Home Ec -- and This Time, for Boys, Too!   

 By Robert Lustig, Cindy Gershen, and Shane Valentine

In Contra Costa County, Calif., a high school student juices six oranges to make eight ounces of juice, downs it in 12 seconds flat, and says, "I'm hungry, what's for breakfast?" A second student cuts up six oranges, taking 15 minutes to eat five of them, and says, "I think I'm going to be sick, I couldn't eat another bite." These students are participating in a pilot program to bring the lessons of food to an otherwise unsuspecting population, our nation's impoverished youth. 

A substantial percentage of these kids are obese, and some already have Type 2 diabetes. Most of these kids have never seen the inside of an orange. Previously, they had no connection between the food they were eating and what was going on in their bodies (obesity, metabolic syndrome) and their brains (sluggishness, poor academic performance). These high school students are making a complete and healthy breakfast daily, not just for themselves but for the teachers as well. In just weeks the students' palates have changed and this awareness has spread throughout the school. One student complained, "You have ruined McDonald's for me!" These kids are growing their own food on campus. Students are planting, picking, cooking, and composting. The garden is "ag-certified," meaning the extra produce can be used in the school cafeteria.

In San Francisco, Calif., Kids Cook! is an eight-week pilot program created by the Bay Area American Heart Association's 2020 Task Force. Most students had never cooked before, but they soon had their hands inside the guts of a salmon. After eight one-hour sessions they were let loose as their Iron Chef-style final yielded award-winning fish tacos. Along with a partnership from Whole Foods Market and AHA, they will compete in a Food Truck Competition at the famed Off the Grid Food Truck spot at SF's Fort Mason for Jamie Oliver's Food Revolution Day 2013.

Alice Waters pioneered the Edible Schoolyard in 1995 in a vacant Berkeley lot. Kids who had never seen a fresh vegetable, let alone watch one come out of the ground, are treated to the amazing sight and palatability of "growing your own." Waters' program has expanded via the Chez Panisse Foundation, and is being replicated in various schools throughout the country. Here's the problem: growing a vegetable is one thing, but cooking it is another. California is the artichoke capital of the world, one of the true vegetarian delicacies, yet virtually nobody knows how to cook it; certainly no one in our younger generation.

We are in the midst of the most significant public health crisis of all time -- our national epidemics of obesity, diabetes, and heart disease, which threaten to bankrupt Medicare by 2024. Roughly 75 percent of health care costs are due to chronic disease, and roughly 75 percent of these costs are potentially recoupable. Although we can argue the myriad proximate causes of our health decline, the one reason we can all agree on is the plethora of processed food that started after World War II, but really ramped up starting in the 1970s. Processed food took off due to expense, time savings for two-parent working or single-parent families, and the women's rights movement. Back then, only 4 percent of all food consumed was outside the home; currently, it is 34 percent. Americans eat 31 percent more packaged food than fresh food, usually consisting of a throw-in-the oven pizza or microwave TV dinner.

These alterations in our food supply and methods of food preparation (or lack thereof) have evinced several detrimental effects. First, Americans are getting sick. Processed food means the addition of sugar; of the 600,000 items in the food supply, 80 percent are laced with added sugar (added by the food industry for its own purposes). Sugar drives the development of all these chronic metabolic diseases. Second, processed food means fiberless food because you can't freeze fiber (try freezing an orange, see what you get). Fiber is the stealth nutrient. Lack of fiber is associated with these same diseases. Our ancestors used to consume 100 grams of fiber per day, the USDA suggests we consume 25 grams, and our median fiber consumption is 15 grams. And third, we've lost an entire generation of cooks. Many parents today don't even know how to boil water, let alone prepare a meal from scratch. And this is the "gift that keeps on giving." Kitchen-illiterate parents mean kitchen-illiterate kids, and so on. The human and economic carnage of chronic disease escalates. And so on.

Hippocrates said it first and best: "Let thy food be thy medicine." Numerous studies demonstrate when you switch to a low-sugar, high-fiber diet -- and it doesn't matter which diet you prefer (see the high-fat Atkins Diet or the low-fat Ornish Diet or the Paleolithic Diet) -- they all work to treat, and in some instances even reverse these chronic diseases. All three have been shown to reduce reliance on anti-diabetic medications. You know what you call a low-sugar, high-fiber diet? Real food. You can't buy these diets in a box. You have to prepare them.

Teaching home economics in school is virtually extinct. This is where food science, preparation, and safety used to be imparted to girls of the previous generation. But boys need this information equally, since the "new family" means that 70 percent of men find themselves in charge of getting food on the table at least once a week. With parents working and kitchen-illiterate, both girls and boys need to know how to cook in order to keep themselves and their children metabolically healthy over a lifetime. Cooking is a life skill everyone needs. It is not elitist to want, shop, and cook real food. It is essential to life. What better way to prepare for college or life than to learn food science, navigating the grocery store, preparing real food meals with limited time and/or budget as well impress your girlfriend/boyfriend.

But there's more for our kids to learn than trussing a turkey. Hurricane Sandy just taught us another painful lesson, evidenced by the throngs of lower Manhattanites wandering the streets in the dark. We have virtually no post-apocalyptic subsistence strategies. What to do when the power goes out. How to act in an emergency. How to start and put out a fire. How to wash clothes. Clearly, our lack of basic preparedness resonates; NBC just introduced Revolution, about life with no electrical power. Some of these proficiencies are taught in Boy Scouts, but girls need to equally know these as well. Let's just not call it "home ec." It needs some rebranding -- let's give it a sexier title: Adult Survival Skills (ASS). "Hey, I'm kickin' ASS." That will get them interested. 

Robert H. Lustig, M.D., is Professor of Pediatrics at University of California, San Francisco, and the author of the new book Fat Chance: Beating the Odds Against Sugar, Processed Food, Obesity and Disease (Hudson Street Press, New York), released today. He invites anyone interested in societal change around obesity to follow him on Facebook starting in the New Year.

Cindy Gershen is chef/owner of Sunrise Bistro in Walnut Creek, CA, and founder of Wellness City Challenge, a community health activist organization.

Shane Valentine is a Marin County Child Care Commissioner, speaker, activist, chef instructor, author of The Baby Cuisine Cookbook, and father of three.

The Cost of Food - Convienence

Previously I wrote "The Cost of Food" linked here. Where I explored the reasons why my family switched to a much healthier diet of fresh fruits, vegetables, and whole foods. Then while pondering why everyone doesn't eat like this three things came to my mind that I wanted to explore further and they are convenience, ability, and poverty.

Today we are going to look at convenience. Good Housekeeping says that the average American eats 6 convenience foods daily. Convenience foods are generally processed, precooked, and prepackaged items made in single serving sizes. The University of Rochester Medical Center in a recent study found that the average American now eats more then 4 meals a week that are prepared away from their home.

It would be no surprise then for me to tell you that 68% of American adults are either over weight or obese. You probably wouldn't be shocked to hear that there is a direct correlation between the amount of take out meals you eat a week and the risk of developing health problems that are weight related (like diabetes and heart disease).

Why are we eating out more? The fact that more people live in households where both adults work is certainly a factor. The length of our commutes have increased in the last twenty years and so has the amount of television we watch. Think about it, when was they last time you had a meal together with your whole family siting at the table together? We can do better!

I understand the convenience factor. I only switched to a healthier diet because I was forced to! So please hear no judgement, but do hear this...you deserve better. You and your family deserve more then food pushed off an assembly line and onto your plate. You and your family deserve better then thawed and served take out. You and your family need the good health, bold flavor, and slimmer waist that comes with eating healthy.


Make the change and you'll never go back.

The Cost of Food - Intro

Brad is at the NIH all week. He prepared these thoughts prior to his departure. 

Last year I was spending a significant portion of my budget on food eaten out. Each trip to the dinner, McDonald's, or Applebee's would cost me between $60 and $100. Clearly we were not making the best choices when it came to the health of our family but as a parent who spend much of their time ferrying kids between activities weekdays between the hours of 4 and 9 pm it was what worked (or what was easy). Ironically it is all this eating out that caused me to develop pancreatitis and then subsequently discover I had Erdheim-Chester Disease. 

What followed the discovery of my ECD was a top down review of all things we did as a family involving food. Over the course of many months it became clear that my body just couldn't tolerate eating out more then once or twice a month (due to the high fat and preservative content of most restaurant meals). We also began to realize that we needed to work on training our children on how to make smarter food choices and that we had to do a better job of feeding them healthy less processed foods.

So we stopped eating out...and our food budget skyrocketed! I thought the cost of buying more healthy whole foods would have been offset by not eating out very often but in fact we are now spending more per month on food then we ever have before.

The time commitment has be enormous as well. In the past we would have made a large trip to the supermarket every other week with a quick trip in between for staples like bread and cold cuts. Throw in a quick trip to Costco or Bj's and food shopping was done for the month. What these trip resulted in were shelves, refrigerator, and freezer stuffed with easy to make processed convenience foods. Now we go to the market at least 3 times a week just to keep the shelves stocked with whole largely unprocessed foods like fruits and vegetables.

I have the luxury of time and the advantages of a middle class income to allow me to eat this way and consequently it has made a gigantic difference in how I feel. My energy level is up, my BM's are more regular (People who are sick talk about their BM's. I know it is weird but we do.), and the food I am eating tastes great.

So why doesn't everyone eat like this? Why aren't we all eating cleaner, healthier, less processed foods on a daily basis? 3 things immediatley come to my mind when I asked myself this question and they are convenience, ability, and poverty.

I am going to explore these three categories and their consequences in the coming days. I hope you come back to check it out.

Constraints

Check out this great article by James Clear on how setting limits for yourself can unlock your true potential.

The Weird Strategy Dr. Seuss Used to Create His Greatest Work (And Why You Should Use It, Too)

In 1960, two men made a bet.

There was only $50 on the line, but millions of people would feel the impact of this little wager.

The first man, Bennett Cerf, was the founder of the publishing firm Random House. The second man was named Theo Geisel, but you probably know him as Dr. Seuss. Cerf proposed the bet and challenged that Dr. Seuss would not be able to write an entertaining children's book using only 50 different words.

Dr. Seuss took the bet and won. The result was a little book called Green Eggs and Ham. Since publication, Green Eggs and Ham has sold more than 200 million copies, making it the most popular of Seuss's works and one of the best-selling children's books in history.

At first glance, you might think this was a lucky fluke. A talented author plays a fun game with 50 words and ends up producing a hit. But there is actually more to this story and the lessons in it can help us become more creative and stick to better habits over the long run.

Here's what we can learn from Dr. Seuss...

The Power of Constraints

What Dr. Seuss discovered through this little bet was the power of setting constraints.

Setting limits for yourself -- whether that involves the time you have to work out, the money you have to start a business, or the number of words you can use in a book -- often delivers better results than "keeping your options open."

In fact, Dr. Seuss found that setting some limits to work within was so useful that he employed this strategy for other books as well. For example, The Cat in the Hat was written using only a first-grade vocabulary list.

In my experience, I've seen that constraints can also provide benefits in health, business, and life in general. I've noticed two reasons why this occurs.

1. Constraints inspire your creativity.

If you're 5-foot-5-inches tall and you're playing basketball, you figure out more creative ways to score than the 6-foot-5-inch guy.

If you have a 1-year-old child that takes up almost every minute of your day, you figure out more creative ways to get some exercise.

If you're a photographer and you show up to a shoot with just one lens, then you figure out more creative ways to capture the beauty of your subject than you would with all of your gear available.

Limitations drive you to figure out solutions. Your constraints inspire your creativity.

2. Constraints force you to get something done.

Time constraints have forced me to produce some of my best work. This is especially true with my writing. Every Monday and Thursday, I write a new article -- even if it's inconvenient.

This constraint has led me to produce some of my most popular work in unlikely places. When I was sitting in the passenger seat on a road trip through West Virginia, I wrote an article. When I was visiting family for the 4th of July, I wrote an article. When I spent all day flying in and out of airports, I wrote an article.

Without my schedule (the constraint), I would have pushed those articles to a different day. Or never got around to them at all. Constraints force you to get something done and don't allow you to procrastinate. This is why I believe that professionals set a schedule for their production while amateurs wait until they feel motivated.

What constraints are you setting for yourself? What type of schedule do you have for your goals?

Related note: Sticking to your schedule doesn't have to be grand or impressive. Just commit to a process you can sustain. And if you have to, reduce the scope.

Constraints are Not the Enemy

So often we spend time complaining about the things that are withheld from us.

• "I don't have enough time to work out."
• "I don't have enough money to start a business."
• "I can't eat this food on my diet."

But constraints are not the enemy. Every artist has a limited set of tools to work with. Every athlete has a limited set of skills to train with. Every entrepreneur has a limited amount of resources to build with. Once you know your constraints, you can start figuring out how to work with them.

The Size of Your Canvas

Dr. Seuss was given 50 words. That was the size of his canvas. His job was to see what kind of picture he could paint with those words.

You and I are given similar constraints in our lives.

You only have 30 minutes to fit a workout into your day? So be it. That's the size of your canvas. Your job is to see if you can make those 30 minutes a work of art.

You can only spare 15 minutes each day to write? That's the size of your canvas. Your job is to make each paragraph a work of art.

You only have $100 to start your business? Great. That's the size of your canvas. Your job is to make each sales call a work of art.

You can only eat whole foods on your diet? That's the size of your canvas. Your job is to take those ingredients and make each meal a work of art.

There are a lot of authors who would complain about writing a book with only 50 words. But there was one author who decided to take the tools he had available and make a work of art instead.

We all have constraints in our lives. The limitations just determine the size of the canvas you have to work with. What you paint on it is up to you.

James Clear writes at JamesClear.com

In Between

So I am loving these short films.

What is your crocodile? How do you feed, nurture, and protect the thing that gets between you and your dreams? I think one of my crocodiles is control. I will be destructive, rude, and sometimes even mean to maintain the illusion that I am in control.

One Day

One Day is a four minute short film from France that explores the "joy" of having ones dreams come true but having no one to share it with.

I found it interesting how at the end of the day in the city he raced back to his home even though it meant returning to yet another day with rien a faire (nothing to do). It is amazing how often we insist on living out the patterns in our life that we are comfortable with to the detriment of our own joy. So I encourage you to turn off the TV, put down your phone, and break the mold this week by trying something/anything new.