Sleeping

I have been sleeping all day. Can barely move. So much to do...

Post Thanksgiving Blues

Thanksgiving was a bust, from a food perspective. I am not settled with the notion that my diet is so limited. It was painful over the last few days (both at the celebration at work and on Thanksgiving) to see so many foods that I used to eat and know that I simply would not be able to enjoy them. Food has always played such a central role in what a holiday is for me that the day without the food seems incomplete somehow.

That's how Thanksgiving felt this year, sadly incomplete. I tried to minimize this by spending the morning visiting people who were also unable to fully enjoy Thanksgiving because of being hospitalized. Both people were in good spirits and I enjoyed that part of Thanksgiving day the most.

One thing I learned from this holiday was that I would have been happier if I had just brought my own food. Unfortunately, I realize as I write this that I have said that before (in reference to a party I attended), but this time I am planning on implementing the change for the family get together at Christmas.

I have hope though that in the coming weeks this issue will get resolved. I have an appointment with a doctor specializing in Gastroenterology and Nutrition in December. While I don't think all my eating issues will be solved that day it is at least the first step towards understanding what is happening to my body when I eat.It could also be the first step towards stopping y weight loss (now at over a 100 pounds).

I hope you were able to enjoy your time with family and friends as you celebrated Thanksgiving this year. Remember, every moment is a gift and every day we have on this earth is a blessing that should never be taken for granted.

A Charlie Brown Thanksgiving

When I was a kid we only had three or four stations on our TV, depending on the weather and how good the antenna was working that day. Needless to say there wasn't much to watch, but every holiday one could always find the Charlie Brown holiday special. I think The Great Pumpkin for Halloween was my favorite, but A Charlie Brown Thanksgiving isn't half bad either. I hope you and yours have a very thankful Thanksgiving.

Happy Thankanukkah -Give Thanks

With so many people to thank on this day we often forget to thank the one who matters most.

Mrs. Ramrattan was in a particularly thankful mood as Thanksgiving approached and so when her Pea Pod deliver of bread came Mrs. Satchwell thanked Tom, the grocery boy, for delivering the bread. "Do not thank me. Thank Grocer Jones," Tom smiled. "He gave me the bread to deliver."

But when she thanked the grocer, he said, "I get the bread from Baker Brown. He makes it, so he deserves the thanks." So Mrs. Green thanked the baker. But he told her that Miller Samaroo should be given the gratitude. "Without Miller Samaroo’s flour, I could not make bread," Brown replied.

The miller told her to thank Farmer Satchwell because he made the flour from Satchwell’s wheat. But the farmer also protested, "Don’t thank me; thank God," Satchwell said. "If He did not give my farm sunshine and rain, I could not grow wheat."

Yes, even a common loaf of bread can be traced back to God, the Giver of "every good and perfect gift" So give Thanks to God!

Thanksgiving beyond the table.

Thanksgiving is tomorrow...the day of much feasting! The focus of this day used to be on gastrointestinal fortitude. I would plan my eating to maximize the total amount of food I could eat. This type of thanksgiving has ceased to exist for me. That's probably not such a bad thing.

Instead if focusing on food I would like to take a few moments to to reflect and give thanks, because I have so much to be thankful for. One might conclude that this has been a bad year for me, but I think it's been my best year yet. 2013 is the year that Erdheim Chester Disease taught me the secret of life.

I want to give thanks to the following people, in no particular order.

DawnMarie. My wife has taken over everything this year. She has cried with me, traveled with me, picked up the slack for me, lived with me as I am (which isn't easy sometimes). I'm not sure I would have even gone to the Dr. if it were not for her. I love you.

Parents. My parents and my wife's parents have shown me a lot of love, comfort, and understanding. They have watched the kids while I attended doctor's visits and been there with us the whole way. We couldn't maintain normalcy for the kids without them. Thank you for showing your love for me in a real and tangible way.

Colleagues. The staff and administration at my work have been phenomenal.  They are constantly checking in with me and offering to help with anything I need. They arranged for my classes to be near the bathroom and in one room (which may seem small to you but is a giant thing for me). They have never questioned my need for doctors visits or my ability to do my job. They are lovely people and I am thankful that I get to work with them every day.

ECD Global Alliance. Kathy and the people at the ECD Global Alliance were a desperately needed source of information when I knew nothing about ECD. Across the board the people I have met who have ECD have been helpful and understanding. Thank You.

Blog Family. I know that on this blog I am the one doing the talking and most of you never respond. The simple fact that I know people are listening has been a giant stress relief for me. Here on this page I can pour it all out, then move in leaving the pain and depression behind. For at least a day, for that I am thankful.

WEGO Health. WEGO health is a group that is committed to supporting health advocates to foster new relationships, gain access to helpful resources, and to grow their communities.Thank you for the work your doing helping all of us with rare diseases get the word out.

Rare Connect. Rare Connect started locally and has created a platform where people with the same rare disease can meet and discuss issues that are relevant to them. On rare connect I get to share what I have learned and ask question to people who have experienced what I am experiencing.

Kids. My kids, particularly Isabella have been very understanding. Isabella reads my blog and talks to me about it. Keegan asks me how my cuts are (the scars from my surgery). They have asked questions comfortably and accepted the answers they have been given. We have talked about pain, surgery, and death. Overall they have accepted how our lives have changed with grace and understanding that surpasses their years. 

Gate Keepers

I have been dealing with some gatekeepers in the health field the last few days. Their job is to understand the work that a doctor does and to steer people to or away from that doctor. This is easy to do when they are dealing with a constant deluge of the same type of patients. For instance the Gastroenterologist I am trying to see only takes appointments with people who have a cancer diagnosis.

What this means is that when I call (and I don't have cancer / just ECD) I need to convince the gatekeeper that there is a reason they would want to make an exception for me. To do this I explain how ECD is similar to cancer, how it has manifested itself in the same parts of my body, how it is invasive, destructive, and deadly. Then I mention how great it would be for the doctor to get to work with something so rare and different.

Then I sit and wait, to see if the large packet of tests, scans, and reports will help me get past the gatekeeper to the doctor I need to see. 

We do this in our own lives don't we! We partition our work from our personal lives, our school friends from our church friends, and our partners from those we've been in relationship with before. We do this because we like to be in control. We don't want one part of our life invading the other. I have done this in the past, never letting my work relationships get to personal, never letting my vulnerability known.

Now though I share it all with no boundaries, because I simply don't have the energy, will, or ability to keep it all separated anymore. What I have discovered is that these different parts of my life have been waiting all along to support me, to hold me up when the gravity of it all weighs me down.

I just had to open the gate and let the people in.

The Holy Grail

In one of the best epic journey movies of its era Indiana Jones and the Last Crusade we find Indy searching for the cup that Christ drank from when he and the disciples partook of the last supper. He has to find the cup to save his father from (I know this is going to sound crazy if you never watched the movies but it is true) the Nazi's.

As part of my epic ECD journey I have been continuing to lose weight and when I went down to Baltimore last week Dr. Scheel was concerned. After discussing all the details of when I feel pain and when I don't along with what food restrictions I have imposed on myself he said two things.

1.) "I don't think you have pancreatitis, the inflammation on your CT scan was probably from the ECD around your pancreas".

2.) "You should see a nutritionist"

Wow!!! That means I can eat whatever I want right!?!? So I tried (wings and nachos at Buffalo Wild Wings) and felt like I was dying for three days. So there is something wrong, perhaps its not pancreatitis, but we don't know what it is.

This means I need an expert on the retro peritoneal area of the body, someone who understands pancreas issues, someone who has experience dealing with cancer-like invasive organisms, someone who truly understands nutrition, someone who appreciates my desire to eat whole foods.

Unfortunately, that's about as easy to find as a skinny Sumo Wrestler.



Oh look...a skinny Sumo Wrestler! So it is possible!

What I am trying to find is a doctor that specializes in Nutrition. Preferably someone who has a good understanding of invasive diseases and a willingness to take on a rare diseased person like me (by the way I have good insurance so luckily this is not an issue).

DawnMarie helped me send out my information to doctors at Sloan Kettering and and Mount Sinai, both had nurses who were wary of letting me speak to the doctor because, "he has never worked with someone who doesn't have a cancer diagnosis". So we will see. If you happen to know someone who could help please message me their info.

Good Night, and by the way...you all are great. You make we feel listened to, loved, and respected. These are all things one can never get to much of.

No Rest For The Weary

I woke up at midnight last night and was wide awake. In a past life I would have gone downstairs and watched some TV and ate a bunch of food before trying to go back to sleep, but I rarely watch TV anymore and you know the problems I am having with food... so instead I passed the time on Face Book trying to leave a substantive comment on every post that I read. I have to say it was fun! I talked about which of the three stooges I would rather be, the difficulties of giving oneself a daily shot, and the public misconceptions about those of us living with illness. Finally around 2:45 am I was able to go back to sleep.

I say this for two reasons. First, so that you will understand why I commented on your FB posting last night that had nothing to do with me. Second, so that you'll understand I was tired. Unfortunately there is no rest for the weary (another great old saying)

I was tired when I arrived at work and my hips and legs were already aching. Then the day began. It was a long day filled with prepping for visitors, VIP guests, constant movement, precise management of resources, and no heat all morning*.

I was then blessed with a visit from a student who only comes a few times a trimester (this piece of information will become important in a minute). My lesson started with some student directed research followed by small group work (at this point the Superintendent comes in) and we start a turn and talk activity.

At this point I was physically wiped out, but I didn't want to make my school look bad so I kept pushing. Then the Superintendent starts talking to the kid who only shows up every once in a while....Ahhhhhhhhhhh!


Luckily I have the best 8th period class ever and they were able to complete a modified version of the lesson with little management on my part because I was forced to sit the whole period and try to recover. In fact they did so well I think they deserve a treat tomorrow.

Thing is, for the first time since going back to work in September I wasn't able to teach to the standard I set for myself. These kids deserve great teaching and I can now see how a day may come when I am not capable of being that great teacher.

Sigh...oh well. One day and one problem at a time right!




*Our school just completed a 10 million dollar boiler conversion. It was broken on the coldest morning of the real. I guess 10 million doesn't buy what it used to. 

Exhaustion

I have had two instances of sheer exhaustion in the last week that scared me a little bit.

First: Earlier this week I went to a Professional Development in Manhattan. This meant taking the train in, lots of steps, subway, standing, walking a few blocks. Then after a whole day in a meeting repeating the same process in reverse. There is no doubt that at my current health this was pushing the boundaries of what I am capable of. Here's the problem. I got on the wrong train on the way back home and didn't realize it until the conductor told me.

I must have looked a wreck because she explained real slow how I was going to get back to the primary station and where I would need to go to catch the next train to my house, she then wrote me a note on the back of my ticket for the next conductor. I almost gave up. I was so tired and just couldn't see doing anymore, but it was the one day in the week when DawnMarie gets a break and I do all the shuttle service. I try real hard to honor her space and time.

Second: I went to see Isabella play her last game of the soccer season yesterday (I used to see all the games but it has been to much as of late). I then stopped by the hospital to visit a friend and when that was done Bradley had a birthday party. Before even arriving at the party I was whipped. I tried to participate (you know stand around the edges of the party and talk to people you don't know about stuff that's not really important), but it just wasn't working well and I started to get grumpy. So I went to the car and chilled.

It is hard to set limits for oneself particularly when you are a Crump and when you are stubborn (those two things seem to go hand in hand). No one likes to admit their limitations, I find this particularly difficult when doing so means "letting down" someone else. I think though that sometimes its just going to have to be about me.

Tufts University Health and Nutrition Letter

When because of health issues you start watching everything that goes into your body very carefully one soon realizes how much miss information there is out there in the health and nutrition sector. For someone else this may not be a big deal but for me a mistake in my diet could cause significant physical pain, so I listen closely when I am listen to a medical professional talk about where they get their information from and then seek out those resources for myself.

One such resource is pictured below. I learned about the Tufts University Health and Nutrition Letter from one of the parents at a soccer game who is also living with a rare disease. 

Tufts University H&NL

The Tufts University Health and Nutrition Letter has for the last 25 years thoroughly researched and reported on the health and nutrition of food we eat every day. So when my first copy came I snatched it out of DawnMarie's hand like it was a stack of $100 bills and said, "yessss its here!"

I find I have little control over my life now a days, which is unsettling for a control freak like me. One thing that helps me balance that lack of control is information and diet. The more I understand food and control what I eat to maximize the health of my broken body, the better I feel emotionally.

Plus after reading this months newsletter I now know that Cocoa is good for you (at least until the next study says it isn't)!

Experiencing Change

Went to a professional development yesterday in Manhattan that integrated Literature and Math using Common Core. Now teachers, I can hear you groaning but it has actually been a very good PD series.

So I went to a Math and Literacy PD today, which started with an Ice Breaker in which we pulled colored skittles out of a bad and then each color was assigned a question to answer. My questions was, If you had unlimited funds what would you do with the money?

2012 Brad would have said, “I would buy a plane and take everyone I know to travel all over the world. I would buy a house on each coast. I would buy an classic car….etc.”

2013 Brad said, “fund research on a cure for ECD”

Life has a way sometimes of helping us to see what is really important. ECD has forced me to focus on my life instead of just living and letting life happen. Experiences change who we are, and that's not a bad thing.

DawnMarie's Turn

I asked my wife DawnMarie to write today's post. Here it is:

Last week Brad asked me to write an entry for his blog about what life is like to live with him. I laughed! Later on he asked me again and I could see that it meant a lot to him. So here it is…

For the past six years, it has been hard work living with Brad. He is opinionated, headstrong, and brutally honest. I would always tell him to choose his battles. Why fight over the small stuff. 

Brad’s illness has given me a new perception on life. I cherish every minute with Brad. I cherish every minute with the kids. I cherish every minute I have to myself. We seem to enjoy the silence. We can sit in a room and hold each other’s hand and no words need to be exchanged. Brad has a presence about himself. I enjoy hearing his voice; he is downstairs right now talking to Isabella and helping her with a project.

We have a difference of opinion on how to raise the kids, which has caused many disagreements. There have been many times that we went to bed angry and wouldn’t talk or text each other, waiting for someone to apologize.  I think most of the time; I finally gave in and said I was sorry. Looking back, it doesn’t seem really important. Now I let most things roll off my back. I choose my battles more wisely.

Our life has been filled with adventures and travels. I have seen much of the United States driving around with Brad. Once I saw on the discovery channel a special about the Mall of America and that summer he planned a car trip out to Minnesota.  That is Brad’s caring side. He is very generous to those around him. 

During the six years of our marriage; parenting has taken up most of our time. We spend more time together as a family then as a couple. No dates or alone time. Always being pulled and running.  Always sharing each other with others. Now we enjoy just getting out for a cup of coffee, or going food shopping together. Having together time to talk about our day.

The last six months have been a complete rollercoaster ride an array of emotions, laughter and tears. Brad has won the lottery… no money received but a lifetime of blood work, scans, MRI’s, Pet scans, trips to Maryland, copays, medical billing (my new job), and medicines. To tell you the truth, it is ok!

I am so happy that Brad is finally off the prednisone because you never knew whom you were getting. Good Brad or Crazy Brad.  If good Brad was around, we laughed, ate dinner together, and chilled out as a family. But if Crazy Brad was around we all ran away. After the first month though, I would just laugh because he was not acting normal. Meltdowns over clothes! My favorite was his meltdown over a haircut that wasn’t to his liking. He decided to trim his hair all by himself but forgot to check the setting and took a big chunk out of this hair right in the front. Oh drum roll please…it was 6:00 in the morning before work. So he went through the day wearing a wool hat. LOL then he goes to the barber and tells them that his wife did it. They were so upset with me I had to find a new shop to take our son Bradley to.

These last six months have strengthened us as a team. When I am feeling overloaded or completely drained then He will pick himself out of bed and take over. I am sitting in my room right now filling back up. When I am crying uncontrollably he is there to embrace and console me. 

Living with Brad is never dull!

I always feel loved!

Judge Not

It is easy to judge people. Think about it, which neural process is quicker in response to someone acting crazy.

Jerk. or I wonder what is going on it that guys life that made him so upset?

We all know we shouldn't judge, but we do it anyway. Why? I think I judge because it is easier that way. When I judge things by my own reasoning I avoid the sticky and often confusing process of having to accept the true complications of life.

This makes me a butt head, arrogant, selfish, and normal.

Normal isn't right though and normal certainly shouldn't be the standard by which we judge our actions.

We should work hard to understand what others are going through. My life is complicated right now so it is easy for me to see other peoples stress, pain, and fear. Many of you have similarly experienced challenging health issues that have brought you to the dark side of the soul and back again. For us judgement seems a waste of time.

So we let peoples slights, failures, and streaks of crazy wash past us like the wind. Because we have known the crazy that can't be controlled, we know the fear that drives us to insanity, we know pain both spiritual and physical, we know that we can't possibly understand the life issues of another.

What we can do is speak up the next time someone is judging in our presence the life, actions, or value of another human being. Because to do otherwise is to become that person we were before we gained all this insight. And if we let that happen then all that crazy, all that fear, and all that pain were experienced for nothing.

Why I Drive To JHU

Growing up I belonged to a health care cooperative called Group Health (In Olympia Washington). It is what would be called a managed care plan today. If I needed to see a specialist it had to be approved by my doctor. The primary care doctor (Dr. Spee) was very good though and I liked the system. Plus one never waited more then 30 minutes to see a doctor and you always had your own room at the hospital.

Later in life I worked at a private hospital in downtown Bosie, Idaho for a year. This hospital had a busy emergency room that took in a lot of people who could not afford to pay. Over the course of the year I worked in every department and I never saw people wait more then 30 minutes, normally less. Just like in Washington the rooms were single occupancy. On top of this every floor had a family waiting room that was equipped with a couch, TV, and snacks. 

Then I came to NY...wow!!! Long waits at lots of different doctors offices. The hospital rooms regularly have two patients in them. There are limits to visiting hours (the limits at the hospitals I am familiar with on the West coast were generally ignored). Overall far to many people in to small of a space. Space that has not been planned to accommodate the total amount of people, families, friends that would be present.

Then I went to John Hopkins....

That is me waiting for my appointment. I usually show up 30 minutes early and I will be the only one there. I spend thirty minutes to an hour consulting with the doctor and when I come out into the waiting room...I am the only one there. When I have a PET Scan, Blood work, X-rays, etc. they are always waiting for me. No rush of people. No rules preventing my family from being with me. No weird smells. Peace and Respect.

Well worth the drive.

CVS - Crazy

Yesterday was a very long day. I drove down to Baltimore for my appointment and then came back the same day (I usually sleep over but I am trying to miss as few days of work as possible so we made it a one day trip).

One of the things we talked about with Dr. Scheel is pain managment. As I mentioned yesterday he thinks all of the pain I am experiencing is related to the ECD clusters. That would mean that whatever is happening in my retro peritoneal cavity is causing pain to radiate through my hips, thighs, and back. That being said he prescribed me a new pain management drug called Tramadol, saying that it was good because it wasn't a narcotic but still effective.

So...I want you to know that I am not proud of what I am about to tell you. I am only telling you this because I started this blog to help me sort out my thoughts and to help others that will come after me understand what it is like to live with a rare disease. So I want to acknowledge that sometimes things do get a little crazy!

Here are the facts:

1.) My doctor sent my prescription to CVS so that it would be ready for me to pick up when I got home.
2.) We hurried from Baltimore, MD only stopping once to get there before they closed so we could pick it up.
3.) They told me they didn't get it (the prescription).
4.) I know they got it, I saw the confirmation when I was in Baltimore, MD.
5.) They then told me they had denied the online prescription because in NY Tramadol is a controlled narcotic (not so in MD).
6.) The Pharmacist was unapolagetic and said I should have brought a paper prescription.
7.) I told her I had e-prescriptions filled many times.
8.) She said I would have to go back to the doctor and get a written prescription.
9.) I said (to DawnMarie) I need to leave I am getting mad.
10.) I yelled something as I was leaving the pharmacy about how i was tired of constantly dealing with incompetent people with low IQ's (you get the idea).
11.) I punched the top pack of toilet paper in a large toilet paper castle built as an endcap display.
12.) I was almost out the door 10 second later when I heard a crumbling noise. The display then collapsed, with toilet paper going everywhere*.
13.) I left the building.
14.) Pharmacist said, "I understand why he is frustrated"
15.) DawnMarie said, "No, he is in pain!"
16.) DawnMarie stayed and figured out what we need to do to get the pescription filled.
17.) All the pharmacy staff started talking about, "that crazy guy who just knocked over the toilet paper display like he was Chuck Norris or something".

How I was feeling...ashamed as I sat in car waiting to get yelled at for my behavior.

How DawnMarie reacted...rolling non-stop laughter, kept saying something about how I was a lunatic when she wasn't laughing so hard I thought she would pass out.

I am glad that DawnMarie was able to laugh about it. In fact she is laughing right now as I am typing this. I however am mortified for two reasons. First, I like to think I have a little more control then to snap in public. Second, I never realized how powerful and devastating my punching was.

Watch out CVS. I better get good service next time or the Paper Towels get it.

*(If anyone from CVS is reading this I am sorry, the toilet paper display was pretty and I did not mean to ruin it.)

ECD's Unanswered Questions

With my pain level increasing as I transition off of Prednisone I found myself back in Dr. Scheel's office at John Hopkins today. Fortunately he is an "expert" with ECD, unfortunately he is in Baltimore, Maryland. DawnMarie came with me and we came with a long list of questions. What I am finding though is that most of my most important questions don't have answers.

Questions (Black is me, Blue is the response):

How do we know I have ECD? The samples taken were found to contain the cells that indicate ECD, this was verified by two separate pathologists (One at NYU and the other at NIH).

Why am I on Kineret and not Interferon Alpha (a common drug used to treat this disease)?  Kineret has proven to be effective in many of the cases my doctor treats, whereas he has had little luck with Interferon Alpha. Kineret has less side effects. Some doctors would say that Interferon Alpha  should be the first line treatment, there is disagreement on this issue in the medical community.

Why am I loosing so much weight? No Idea. Wants me to see a Nutritionist.

Why am I in so much pain? Doctor does not believe the pain experienced when eating is related to my past Pancreatitis. In fact he believes the inflammation from the ECD mimicked Pancreatitis but that I never actually had it (he says the proof of this theory is my blood work which has never indicated I have a distressed Pancreas).Thus is is assumed that the pain is being caused by the ECD (its role in my hip and back pain is unclear).

What's Next? How will we know the treatment is working?  After discussing it with the doctor it was decided I should go to the NIH (National Institute of Health) for comprehensive testing. We will use those tests in February or March to evaluate the progress made so far.

What should I take for the pain? Tramadol.

Overall It was a good trip. I have a answer to my pain management problem, at least temporarily (Tramadol). We discussed how the ECD itself is a big user of calories and that I need to eat more to meet the disease's needs and my own (easier said then done).  Dr. Scheel explained that most of my pain was probably coming from the abdominal and aortic histocyte cells that are in my retroperitoneal cavity. 

I am sure there will be many more unanswered questions about ECD in my future, but hey at least there will be a future for that to happen in. 

Some questions that remain unanswered:

Will I ever get to stop taking Daily Shots?
Will Kineret work for me? 
Will my bone pain continue to increase?
Is Tramadol going to solve my pain managment problem?
Who killed JFK?
Will this disease prevent me from working at some point? 
What is the prognosis? 

I Will Fight

As I sit at my desk here at First United Presbyterian Church of Queens Village, NY early Sunday Morning the church is quiet. I like this time on Sunday the most.

There is something about being still with God that brings we great comfort and peace. I need that peace some times, don't you? Today for instance I awoke to a scale that read 153.9 (which means I have now lost 100.1 pounds since starting this journey). God keeps challenging me with this disease. Can I stay positive in the face of devastating physical and emotional stressors? Can I be a leader in the image of Christ while my world is falling apart around me? Can I follow His spiritual lead when my physical body is giving up on me?

As the bells toll for mass at Our Lady of Lourdes Catholic Church in the background I wonder what the answers to these questions will be. I can promise you this...I will fight! I will fight to keep teaching, no matter how much my bones hurt. I will fight to maintain a positive outlook even if ECD takes away my ability to walk. I will fight to follow Christ wherever He may lead me.

If I must go I tell you this, I will not go gently! I will not quietly fade away! I will fight!

Dee Dee's Luncheonette...of disaster!

So here is my issue I was down to 154.8 pounds Friday morning and so because of that weight I started to spazz out emotionally. I freaked out for multiple reasons.

The place with great food that causes me much pain.

First, of all it means I have almost lost 100 pounds since June, which if you were dieting this would be a good thing but I am not dieting so for me this is a bad thing.

Second, the jeans I was wearing Friday were loose, once again I realize for most people this is not an issue but for me it was because I had just bought them a few weeks ago and they were waist size 32".  Which means more money wasted buying smaller clothes. By the way, I am now a size 30" waist, how frikin crazy is that!!!! Overall I find the whole buying new clothes that fit thing very frustrating and would probably just keep wearing my old clothes but for some reason their poor fit makes me very itchy/squirmy (very scientific terms I know).

Third, The weight loss is completely out of my control. Which is just a reminder that there are so many things going on in my life that are out of my control. I have tried varying my diet, limiting calories, increasing calories, eating less fat, eating more carbs, nutritional supplements, shakes, blanding, and so Friday I tried something new...

Love the mural and large booth, fits all six of us well.

So I had this bright idea (meaning not a bright idea) last night. I would just go eat a bunch of calories, thus stopping my weight loss in its tracks. I was of course aware that it would be painful to eat "normal" food, but what choice did I have (rhetorical question)? So I really splurged having a grilled chicken breast sandwich with tomato, mozzarella, and pesto spread. It came with fries and I had ice cream for desert. Result .... oh my son of a motherless goat!

So I came home and took some heavy duty pain medicine (dilaudid), which took 4 hours to work (something is wrong with me...I have been trying to tell them but you know...they dont listen). Didn't sleep well and I am exhausted today.

But .....drum roll....long drum roll....I didn't lose any weight yesterday! VICTORY is mine...not really, but I'm going to pretend like I won so I don't get depressed and cry.

Good Bye Prednisone

My affair with Prednisone ended today at 8am when I took my last pill. I have weaned myself down to the point where I can stop. Thank you Lord! I hate Prednisone!!! She made me feel crazy and overly emotional.

To commemorate this event I would like to say a few words about Prednisone. Obituary Style.

Prednisone and I first met in June when I was erroneously diagnosed with retro peritoneal fibrosis. It was a whirlwind romance in which Prednisone was introduced as my lifesaver, only to soon become obsolete and unnecessary. By that point though Prednisone had already become part of who I was, taking over the function of my organs in such a way that she could not be easily removed.

Since finding out I didn't need Prednisone things have been rough. Prednisone has expressed a desire to stay a part of my life but I have insisted on weaning her out of existence. She has pushed me to some high moments and caused many a night of tears but it has all come to an end.

Fair well Prednisone, may the distance in time and space between us grow as you seek someone else to "help". As I say goodby though I cannot help but feel that you will at some point make your presence known in my life again, God Forbid. Until then Prednisone! Good Night.

 

Whole Food Trial #2

So pumpkin soup was a big bomb, but I am not easily dissuaded. Last night I made Jamaican Jerk Chicken with Mellon and Salad. Everyone got a 4 oz serving of chicken (which was pounded with a mallet and coated in lime and jerk seasoning), mellon (which was very ripe), and a lettuce and cucumber salad.

Simple and yummy...but the best part was that every kid cleaned their plate! I can remember a time when Alyssa wouldn't eat anything but plain roasted chicken. Last night I saw her stealing some chicken from her sister, that's growth (we'll deal with the stealing later).

I want to try and make a low fat banana bread next.

Pain/This Sucks!

I broke the barrier to 1500 calories for the first time in months today. I have been working on increasing my calories for the last month in an effort to slow down my weight loss, with some success. Today for the first time in a long time I ate a substantial amount of calories (in 8 small meals over the course of the day). What resulted was some really bad stomach pain after dinner and my pancreatic pain is high right now.

feeling pathetic

I think I lie to myself sometimes that everything is okay. I mean I get up and I go to work, I take the kids to soccer practice, I preach on Sunday, I cook, I'm healthy and normal. Right! But I'm not healthy and normal. This is lame... I don't want to have to deal with this. What I want is to be chubby care free Brad again. This version of me sucks.

You can say all you want about how I am a better spouse, Pastor, father, because of this but I can't hear that right now. What I want is to be able to go to dinner with my family and order a meal, then relax afterwords. I want my wife to think about our future and not cry. I want to know...for sure...that there is a future for me.

PAIN/THIS SUCKS!

Bias, Privilege, Prejudice

Having a rare disease has helped me understand that all those things my Dad told me about talking to hear the sound of my own voice was probably true (sorry Dad, not meant to be a critique). The fact is we all could do a much better job of identifying our own Bias, Privilege, Prejudice. When we know what these weaknesses are we can control for how they direct our life away from others needs and towards our own selfish desires. 

www.zenpencil.com

One Day at a Time

Picked this shirt up at the ECD conference. Zebra ribbon is for Rare Disease Awareness.

One Day at a time...that's my new Motto. I noticed last weekend that when I stayed off of my feet for most of the day my legs/hips did not hurt at all. I am theorizing that the more I am up and moving around the more bone pain I experience. This is certainly true at work, where I was hobbling around by the end of the day of Friday. So i'll just need to stay off of me feet. That's easy.....

Said no one ever! I have kids, a wife, a dog, a job, another job, and a personal disdain for stillness. Stillness makes me feel lazy and as my father said, "we are wasting daylight". I'm not sure if this means I can be lazy when its dark or if one would then be wasting moonlight, but you get the idea. I don't like to sit still, I have been finding this more true in the last year. Time is certainly limited and we must make the most of every second!!! Right!

Sometimes though when we find ourselves limited physically, emotionally, spiritually, it is because it is time for us to stop. Sit down. Waste some daylight. Experience the world from a whole new perspective.

Hope you have some time to do that today.

Whole Food Trial #1

I said a few weeks ago I was going to try to eat home made whole foods at least once a week. Well here I am making pumpkin soup, two weeks later. Why not sooner? No special reason, just life.

So it took maybe 30 minutes, a ton of dishes, and four ingredients to go from this (above) to this (below), 

Final thoughts. I don't really like pumpkin soup, who knew!?! Probably would be better with bacon, but as you know that's a big no for me. 

Veterans Day

 

The armistice which ended World War I took place on the eleventh hour of the eleventh day of the eleventh month — November 11, 1918. Commemorated as Armistice Day beginning in 1919, November 11 became a federal holiday in 1938. Following World War II, Armistice Day became Veterans Day, and is dedicated to the veterans of all wars.

Since World War II most wars have been described as military actions. As someone who lived through one such interaction I want to let you know there is no difference to the soldier on the ground what you call the event they are involved in where people are trying to kill them. We owe our Veterans from all era's a debt of gratitude every day of the year, but particularly this day.

Take some time today to thank a Veteran you know for their service in a personal way.

Oh and by the way, the next time your speaking to your congressional representative please remind them of the importance of honoring our promise to care for our Veterans when the return home, both physically and emotionally.

Saturday Morning Compassion

This is how I spend my Saturday mornings (the dogs name is Gracie).  Saturday mornings provide me with the time I need to recover from the weeks hectic schedule. As anyone with children can attest the week seems to get busier and busier every year. I can only assume there comes a point where this trend reverses itself, but with a bunch of young kids in the house I doubt I will see that point anytime soon.

With little time for peace or reflection during the week, Saturday morning is where I find solace and when I put the finishing touches on the Sermon for Sunday. This week I am looking at why we as humans have such a hard time following the rules (Ten Commandments).

Think about how often we speed, make illegal right turns, and zoom through yellow lights (and that's just in the car!). Rule breakers make me crazy!!! Like when you see someone in the express line at the grocery store with 20 items. What bothers me the most is the arrogance, you see when someone is breaking the rules I assume they think they are better then everyone else!

Except of course when I am breaking the rules....then it is for a good reason.

That's the problem right. We like to hold the world to a different set of standards then we hold ourselves. Now that the Prednisone is starting to wear off and I am almost free from its malicious grip compassion has started to return to me. Perhaps it is a more informed sense of compassion then I have ever had before, because for the first time I realize that some rules (the earthly type) aren't really worth getting upset about. Especially since we don't really know whats going on in the lives of others.

Good luck this weekend, and may God grants you wisdom and peace.

It Never Ends

Went to the dentist and he set me up with a temporary bridge. Now I find myself facing a three day weekend and my tooth is hurting. I am not sure how this is possible since the tooth that cracked has already had a root canal (pehaps it is the tooth in front of it which got prepped for the bridge). Either way I do know that I REALLY don't need this right now.

It is Friday (the end to a long week) and my legs have been hurting more this week then ever before and for the first time ever my arms have been aching as well. It is Friday and I came home, made dinner, ate (even though I wasnt hungry), cleaned the basement, changed*, and now I wan to be left alone.

But they wont leave me alone!!!

People keep talking to me...and what I really want right now is to be left alone. NO, I am not crazy! I am living with ECD and I am doing the best I can.

*I know changing isn't a big deal for most people, but for me it can be a issue. I am having a bad day with my clothing. I am unhappy with how my stuff is fitting (it feels weird) so it took me 20 minutes to change. Even now my pants are aggravating me because they keep sliding down. Hard to explain...even harder to understand.

Anti Anger

I used to complain about my job. I can remember just last year I would freak out getting super upset if expectations changed suddenly. If I was asked to do extra work I would quietly curse the boss that was "heaping" the work on. In retrospect it is sort of funny because I now realize that none of it is worth the energy. Think about it for a second....when was the last time being angry about something at work changed anything?

Just to put things in perspective, last night I got a message on my FB page from a person who is fighting ECD. She isn't able to work because of what the disease is doing to her body. She isn't really plugged into the ECD network of doctors. She isn't able to get the right drug to treat her disease because of its cost. Her life is falling apart and its scary! That's a problem.

It is a problem that ECD patients are dying without being properly diagnosed. It is a problem that insurance companies deny coverage for life saving treatment just to see if you'll give up. It is a problem that people with ECD aren't aware of their rights, treatment options, or have access to knowledgeable healthcare teams.

The things I am asked to do at work are not a problem. Being able to work is a privileged. I am so grateful that I can still do the big things like walking, talking, and teaching. The details...the ones that used to drive me crazy are nothing but tasks to be completed now.

Do yourself a favor...chill out!

Dental Redemption

My Dentist banned me from his office in August. I know what your thinking, "I always knew that guy was crazy". Well it turns out I'm not crazy, it is just that Dr. Golan wasn't willing to risk moving forward with anything (I have two crowns and a few cavities that have popped up in the last 6 months) until we had a larger understanding of where the disease was in my body. We have seen such rapid decay in the last 6 months that he was concerned. He thought that if the ECD was in my jaw it might hamper proper healing.

So when my PET Scan came back negative for ECD anywhere except in my abdomen and pelvis, which was great news! It also meant I could go back to the dentist, but I didn't call. Honestly I have always had great teeth and good dental care and I am embarrassed by how bad things have gotten. The dentist believes the rapid decay is because of the high doses of Prednisone but reasons aside I don't like to let my dental team down and I have been feeling a little blue about the state of my teeth.

Cue disaster...I broke my tooth last week. So today after work I went to the dentist and after explaining the drugs I'm on and having him look them up he decided he could risk working on me and decided to put in a bridge. Apparently it was a close call between a bridge and pulling the tooth but he just didn't feel I was a good candidate for surgery and a replacement implant right now (and he's right I'm not).  Here's to hoping it all works out.

Life it is never boring?

Health vs. Time

Health is something we seem to take for granted in the United States.

When we are not actively ill most of us don't consider our overall health at all. I think the reason why is that being healthy takes time. In fact if I suggested to most people that they should go home and cook anything from scratch (code word used to indicate one is cooking from whole ingredients) they would probably laugh. We laugh because we don't have time and we laugh because many of us don't have the skills needed to bake a cake from a box let alone anything else more complicated from scratch.

This is probably why more Americans then ever before are fighting obesity, diabetes, and heart disease. Ironically we find ourselves in an era when home-economics classes are being cut, right when our children need more then ever to learn how to eat and live healthy.

Think about the effect this processed food focus has had on us all. How much would our lives improve if we slowed down and made time to cook well and eat right. Not only would our waist line benefit, but so would our families. Time spent together, even if it is spent cooking is precious. Plus it would be fun and tasty as well.

Do yourself a favor and slow down that life of yours. You only get one life and if you run though the whole thing you'll regret it someday.

P.S. Guys, your on the hook for cooking also. Don't think I was just talking about your spouse! Step up and prove that guys can handle their share of the work.

I'm Depressing!

A close friend just told me my blog was depressing last week. Said I was to negative. I want to respond to that comment now.

You need to understand, my life is depressing right now. Some days the only thing that gets me out of bed is the routine and the knowledge that if I stayed in bed I would worry my wife. The fact is I have a monster inside my body that is trying to kill me and there is no cure. There are shots, scans, pills and tests but there is no cure. Don't think about it some say, well I give myself a shot every day of a drug called Kineret and I won't know until February if it is even working. That's hard not to think about.
 
They say this isn't a cancer but it crushes veins, invades organs, and moves throughout the body in unpredictable ways. People who get this disease...they almost all die.  I might not die, we may make enough advances in the study of the disease in the next 5-10 years to save my life. Might and May are my hope, but you think I'm to negative?

What I find depressing is the thought that I won't get to travel the world with my wife when we retire, because the truth is there is a good chance I wont be around to see that day come. I find the thought of not getting to see my four kids grow up so depressing that every time i think about it I cry, but the reality is I might not see them grow up! I fear no longer being able to work and thus loosing my contact with the world.

And every week I lose more weight...

You see this blog is for me! It is here so I can unload my burdens. If it bothers you don't read it! You can join the 95% of the people in my life who would rather just say high as they pass. To which I will smile and you can go on your way pretending like everything is okay...or...you can walk with me through this valley.

Feeling Weak.

As I continue to struggle with my weight I have noticed that long periods spent standing or walking make me feel weak, particularly when I wake up the next day. I certainly cannot do some of the things I have done in the past. This disease has in many respects left me feeling weak and inadequate (in my ability to serve my family and in my ability to be the "strong" one in my marriage).

The truth is that in many respects we are all weak and inadequate. You may not be suffering from the type of physical weakness caused by a rare disease but you are most certainly suffering from weakness in some aspect of your life. For you it may be moral weakness or a personal weakness. Whatever your weakness is we often find ourselves in a place where we feel very alone, like we are the only person to have ever faced our own personal demons.

This is not true! You are not alone! It is in our weakness that we come to realize the strength of others. For me my weakness has helped me see my wife's strength. This is a strength I could not have known had I not first been made weak.

Weakness, it ain't all bad. 

ECD Conference - Final Post

I head to bed tonight more informed about my disease then I was when I arrived. If that were all I gained from this trip it would have made coming here worth while, but its not all i have gained.

Through interacting with patients and listening to a few medical panels I have come to understand the major courses of treatment for this disease and their common side effects. I have also learned about a group of doctors at Sloan-Kettering in Manhattan that have a test I need to take, about a research program available through the National Institute of Health, and I have gained a deeper understanding of how the organization supporting all of us living with this disease operates.  

All this is wonderful. More wonderful though then any of the information I received while her in San Diego was the opportunity to meet others living with my disease. I have seen what the future may hold for me and its not pretty, but even at its worst there is still value and dignity in the lives of those living with ECD.

So as I go to sleep I will rest well knowing the future has promise.

Thank You Kathy and the ECD GA support team for making all this possible.

ECD Conference Post #3 - Awake

Having a great time in San Diego. I have been awake since 3am because I insisted on pretending I was normal last night and went out and had a regular dinner. The fish was amazing, the gnocchi was superb, the brownie a la mode was to die for! So now I am dying, not literally of course but figuratively for certain. I think this one meal had more fat in it then my body has consumed in a month.

Consequences - Stomach Ache, Back Pain, Insomnia.
Benefit - Fellowship, Happiness, Great Food.

The truth is though that I have to figure out what is going on with my Pancreas, officially! Reason being that if I do have pancreatitis then I can't splurge like I did last night because it could have serious consequences. It seems like my list of questions for my doctor keep getting longer and longer (better call and ask for a 45 minute appointment).

Until then...I will survive! (Oh, as long as I know how to love, I know I'll stay alive
I've got all my life to live, I've got all my love to give. And I'll survive, I will survive, I will survive!

Insert Tina Turner sound track into your head for the rest of the day, your welcome.). 

ECD Conference Post #2

 The Erdheim Chester Disease Conference has been very good. Just met someone else who has ECD and is on the same treatment protocol that I am. Apparently if Kineret is working one should see a reduction in bone pain, which has not happened for me yet.

Similarly a few people I met did not have a good response and had to increase the amount of Kineret they were taking on a daily basis to two shots a day (I take one).  For this person Kineret has not reduced his symptoms, only slowed down the progress of the disease.

It turns out that my doctor made it clear at the prior days medical symposium that he felt jumping straight to more aggressive courses of treatment (which generally calls for the use of a drug called Interferon) is a mistake. This would explain why he hasn’t put me on a treatment of Interferon.  In some ways I want the Interferon because I think that bigger is better.

Perhaps this is a viewpoint that is to guided by growing up during the cold war. In other ways I might also want the Interferon because everyone else is getting it. Sort of like my daughter who insists that she is the only one who doesn’t have a IPhone.

I’m not sure jealousy should be the guiding force for my medical treatment. Its possible I need to rise above the mental state of a thirteen year old that just wants what everyone else has and accept what my doctors say. They are the experts after all.

ECD Conference Post #1

Just watched a great video on the birth of the Erdheim Chester Disease Global Alliance. The video shows the personal stories of a few different people and how they found out they had the disease. It was very touching. It also highlighted the issues related to diagnosis (lack of well informed doctors), common trend of initial cancer diagnosis, and a general lack of information found.

One of the things I hope will come out of the medical symposium that is a part of the conference is a common course of treatment. I will discuss this some in my next post when I talk about the difference between Kineret and Interferon. Those of us looking for answers would really appreciate knowing what the common course of treatment is for our form of the disease. This is of course easier to want then it is to accomplish when so few people have the disease and it represents itself in so many different forms.

Final thought…one of the doctors present from the National Institute of Health mentioned that the issue with medical literature isn’t writing papers. It is easy to write papers about a disease and how you think it should be treated. What is difficult is to get the right people to read those papers and to hear about our disease so they will be well informed when they meet a patient who has ECD.  This is true on so many levels.

Its easy to complain, Its easy to shout, Its easy to cry…what’s hard is to get the right people to hear those complaints, shouts, and tears.

Spazing Out in San Diego

We got to the Marriott Marquis & Marina in San Diego at about 10:30pm. Within a few minutes i started to worry about food for tomorrow (even though I know we are eating our meals together as part of the conference). One issue is there are just 3 meals scheduled for tomorrow (for most people this would be normal). The issue is I have been eating 7 times a day, starting at 6 am and then every two hours after that. The more I thought about it the more I began to worry that this weekend would turn into a disaster because I would lose to much weight (I could easily drop 2-3 pounds this weekend if I don't keep my routine up) this weekend.

I want to pause now to say I know this sounds crazy! I know it is not rational or logical to be spazing out about a few small meals...and I would probably have found food in the morning that I could have set aside for snacks. That being said, I insisted on going to the grocery store at 11pm.

An hour later I returned with organic oatmeal, all natural applesauce, fiber bars, cottage cheese, and water. Life has regained its balance. All is well and I am heading to bed.

I look forward to attending the conference in a few hours, who knows maybe some of them are crazy as well.