Survivabilty Numbers Soar!

Last year in San Diego patients, families, doctors, and other health care providers gathered for the first ever ECD Medical Symposium. One result of this gathering was a consensus paper (written by experts in the field) on ECD. I have included the first and last page of the paper here. Send me a message if you want the whole thing.

 While there is no "cure" in sight the good news is that the five year survival numbers have improved. Plus with a standard now set for treatment and diagnosis other will be able to receive an effective treatment from inexperienced clinicians (inexperienced with ECD) in a more timely manner.

Remember, every day is a gift. So live your life to the fullest.

Super Random Update

The field of medicine for all its advances sure hasn’t made it any easier for us patients to understand what doctors and the labs they use are talking about.

For example I have started to get some test results back from a series of labs I did while at Winthrop Hospital's Hematology and Immunology practice. I don't understand them...but I've gotten them back. We are looking at how my body responds to attacks on the immune system. It clear that I will need to schedule an appointment with the doctor to get the results explained. Sure they send me the results but it’s all written as high and lows with no explanation to what those highs and lows mean.

One advantage to having a rare disease is that until now I could always count one getting quick access to medical professionals. I used to be able to call up and pop in the next day. Unfortunately, the novelty seems to be wearing off and I am going to have to spend some more time waiting in doctor’s offices in the future.

Oh. I had my appointment with Dr. Diamond at MSKCC last week and Dr. Diamond told me I was probably the healthiest ECD patient he had ever seen! I feel like there should be a prize for this fleeting distinction. We did some tests and special stains that I will get the results from as they come in.

After the appointment I had to get blood drawn and I had to wait a long time....almost had a yelling melt down. Luckily DawnMarie was there...she calms me.

Dr. Diamond sent me this email today.

Brad, I meant to write you about your PET scan, this is important. It’s much improved from your prior one. Your initial PET from 2013 showed avid lesions in the abdomen (pancreas and around the aorta), as well as the right tibia. These are all essentially resolved on the current PET.

Now I think this means that what were once active histocyte cells (caused by Erdheim Chester Disease) are now just dead "scar tissue" which is why they showed no uptake on the PET Scan. This is good news. I think.

I continue to work on my nerves/anger/emotional outbursts. I'm not sure what causes me to flip out but I suspect it’s related to the disease process, or perhaps I'm just being a petulant child.

I am in Pittsburgh for the next two weeks by myself (I am starting graduate classes). I haven't been alone for more then a few hours since I first started to get sick....so wish me the best. 

I Am Alive!

I haven't been posting recently about my ECD journey because I am looking for a new teaching job (don't worry I still have my current position I'm just looking for a new challenge). I have been worried that a prospective employer will read my Blog and decide I have way to many issues to take a risk on.

The thing is...I miss talking to you all and the truth is that I don't want to work for someone who would refuse to hire an excellent (though often grammatically challenged) math teacher because they have a rare disease.

So here is my health update. I have been prescribed a drug called Creon (a pancreatic enzyme) to help address my weight loss. I am not taking it! I know. I know. What do I think I am a doctor? The thing is I don't really want to be on a bunch of different medications because who knows what the long-term consequences of taking them for the rest of my life will be. I am hoping that with the right balance of diet and herbal supplements I will be able to hold my current weight. [My weight been stable for 6 weeks.]

I am still taking my daily shot of Kineret. It is annoying to have to tote the shots around with me on vacation and even more annoying to speak with express scripts every 30 days to reorder my prescription, but other then that the shots have become a regular part of my life. One weird side effect is excessive bleeding from the injection site; this seems to occur more often if I leave the shot out at room temperature for more then thirty minutes. I would ask if anyone else was experiencing this but the fact is there are probably only a few dozen of us on the drug…so what’s the point.

When I was at The National Institute of Health Dr. Estrada-Veras suggested I see a hematologist and an immunologist. I got that done yesterday. They suggested I get a blood test to look at my T cells (T cells or T lymphocytes are a type of lymphocyte (itself a type of white blood cell) that play a central role in cell-mediated immunity). Thank God for Wikipedia right! This blood sample is taken and then flown to California for testing, apparently it has to arrive within 24 hours or the test cannot be preformed. So…it is actually my fault that health care costs will be increasing next year.

One last thing. I am going to see Dr. Diamond at Memorial Sloan Kettering next week (He is reviewing all my records and testing to see if I qualify for a drug trial he is running). I’m nervous. You see…I desperately desire to find peace with my diagnosis. Yet so much about my future with ECD feels unresolved and if Dr. Diamond doesn’t figure it out next week it will stay that way.

Not feeling very brave right now.

Teaching and Stress

I rarely write about my work as a teacher in much detail because I know that many of my co-workers and perhaps my boss read this Blog. My dad (a expert on old sayings) once told me you don't s**t where you eat and so with that in mind I have generally avoided the subject of teaching. However, as the year comes to an end I want to recap a few things and share some stress with the Blog so that I can let it go.

In June of last year I went to NYU for surgery, my boss and co-workers were incredibly supportive. I came back to teaching in September with my own room (my mobility was very limited at the time) and teaching a new subject (Geometry).

I would say it took me a good four months to really get going again. I have found the stress related to teaching this year to be incredibly high. First, I was teaching a new subject. Second, the adjustments needed to meet Danielson requirements took lots of time. Third, I found my self caught up in a cycle of negativity among the staff that really quashed my normally happy spirits.

As the year comes to an end I am still trying to figure out how to deal with the moodiness caused by my low testosterone levels. The thing is it has never been a problem in my classroom but the energy needed to keep it at bay all day has left me with little reserves to deal with workplace drama. This is an issue I haven't really brought up at work but nonetheless they have experienced it.

The funny thing is I feel bad that I have let my boss down and that I haven't been the leader I wanted to be this year, but I'm not sure (given the circumstances) I was capable of anything more this year.


Healing from an injury takes time. Healing from a broken life takes longer. My life was broken in 2013 and its only now that I'm beginning to see what the new Brad will look like.
 


 

So Much

I have been feeling stuck recently when it comes to my health. You see for all intents and purposes I have arrived at a stalemate in my battle with Erdheim Chester Disease.

The thing is it may not really be a permanent stalemate so I have to go get a mri or ct scan or fb scan once every 6 months.  And so now I survive from one 6th month period to the next each time praying that I'll be granted another 6 months until my next exam. 

Meanwhile I am still trying to finish seeing all the doctors that the NIH suggested. 
1. I saw the gastroenterologist who grave me a drug called Creon that was supposed to cure my Pancreatic problems but instead has just caused unnecessary side effects. It was like 8 pills a day (for the rest of my life ) and I just decided I wasn't willing to go down that road. So I am trying to maintain my weight more naturally but I just don't have the appetite except for when it comes to frozen yogurt. 
2. I have an appointment to see an immunologist in June, but I don't trust he'll see my health issues as anything more then a long term consequence of ECD that I am just gong to have to learn to accept. 
3. After that I just have to schedule an appointment with a hematologist.
4. I have an appointment at MSKCC in July (testing me for the B-raf mutation while reviewing my biopsy slides and then having a whole set of scans done) for tests that if confirmed negative will mean I am not eligible to participate in a study at MSKCC that is "curing" people with ECD and the B-raf mutation. Thus ending my hope for a cure (at least currently).

I feel Guilty.
I feel like I should be happy with how well I'm doing but I feel like I'm really just pretending like everything is okay while we all wait for my next health disaster to occur.

This along with all the elements of my real life (as it existed prior to ECD) that draw my time, attention, and energy have left me unable to express my thoughts clearly about how I feel. Tired, Energetic, Blessed, Scared, Tense, Angry, Gracious, and Burnt Out.

My future seems great, it just doesn't feel that way yet. 

Name

A baby Alpaca is called a Cria, A baby Badger is called a Kit, A baby Grasshopper is a Nymph, and a Baby Ox is called a Stot. What does one call these ridiculously cute guys? Platypus. Yup, that’s is. There is no name for the baby version of the Platypus.

 

They do exist though. They certainly are capable of causing one to feel happy (heck I want to adopt one). If we saw one being abused or killed we would respond with alarm and disgust. Just because something doesn’t have an officially designated name does not mean it is not important, that it does not exist, or that you are crazy for thinking about it.

Every day people all over this world are diagnosed with diseases that have no category in which they can be placed. Erdheim Chester Disease for instance is not defined as cancer or as an autoimmune disorder (even though it carries characteristics of both). So when people ask us what we have we say ECD…but its hard to describe after that.

Names help us categorize things. Names help us group things. Names help us figure out where we belong. I pray every day that soon ECD and all other un slated rare diseases will be given the power of a name. Not just the name of the disease but the name of the family in which their disease belongs, because when one has a family one has understanding, direction, and support.

Well Enough

I am alive and if being alive is the standard by which we judge our life then I am doing well. 

The thing is I meet people every day who are alive but their lives are not going well. Many of them are isolated and rarely receive visitors while others spend large portions of their day creating drama and fomenting chaos. If that were not bad enough far to many people I know spend all of their time running from one appointment to the next never really enjoying their lives at all. 

They are alive but they are not doing well.   They survive each day but they never really live! 

I want to live boldly!!!

I don't know about you but I have grand dreams for my life. I want to excel at everything I do. I want to be the worlds best husband. I want to get my doctoral degree. I want to be the type of father that raises children who will inspire others. I want to lead my congregation in faith and follow the Lord where He leads me. 

If I could do all these things...it would be amazing. 

But to tell you the truth I would be happy to have just one more day...

...to hug my kids...

...to hold my wife...

...to enjoy the flowers and breath deeply. 

You see one thing I have learned this year is that none of us know how long we are for this earth, so with that in mind I will do my best to squeeze every drop of life out of the time I have and I think that will end up being well enough. 

Spring

Spring brings with it pure sunshine and nourishing rain that will soon turn our neighborhood into a urban oasis. I look forward to the end of dull gray days that end as cold as they started. 

I am also looking forward to my last visit with a new doctor (at least new to me), in June. 

I still have an appointment with Dr. Eli Diamond at Memorial Sloan-Kettering (which will take 2-3 days) and Dr. Carsons at Winthrop University Hospital in June, but there seems to be an end in sight to the constant list of appointments. It's not so much that I mind going to the doctor it's just a lot of work to see a new doctor.

I look forward to someday soon settling into a predictable pattern of check ups with doctors who know me well. Where the hardest question to answer will be, "have there been any changes to your insurance?", or "how have you been feeling?"

Instead of, "we need you to get us the slides that were made of your ECD biopsies", or "could you bring a copy of all the labs you've had done in the last year?", or "we need your families medical history for the last five generations".

These last few visits will hopefully end my time of discovery and help me transition into an era of stability and stagnation (the best I believe I can hope for with ECD at this point). 

We shall see. 

"If God is good and all powerful...how come there is so much evil in the world?"

Ever since I was first diagnosed with ECD I have struggled with how to respond when people tell me that God is in control and it will all work out, because i know they think this means I will get better. I know God is in control, but I don't take that to mean that I will ever be cured of this disease (or that there will even be a tomorrow to wake up to). 

I am okay with this uncertainty, yet i understand for many the notion that God would allow disease, suffering, and death to happen (particularly to those that serve him) is a hard thing to understand. Personally this uncertainty has always given me comfort because it proves to me that God is much mightier and more complex then I can ever, then I should ever hope to understand. For others though this uncertainty causes confusion and pain.

Today I read a wonderful blog by a Pastor I know that shares some thoughts on the question, "If God is good and all powerful...how come there is so much evil in the world?". I suggest you check it out at the link below.
 
Blog of Pastor Rhyan Smith

Who Am I

I just got done yelling at the cashier at Stop and Shop. His crime?!?! 

This guy just stood there staring at me as I bagged all the groceries. He also ran other food up on my eggs and bread, poor form for sure but hardly worth causing a scene over. Feeling very embarrassed plus apologizing ten seconds after yelling makes you look even more crazy.

I have got to find a doctor who can help me with my low Testosterone! I find myself saying things, responding to others, and generally acting like someone who is not me. I have noticed that exhaustion and stress make it worse so....good night. I have to get my sanity sleep.

Do You know Me?

How about you get to know me then skip the judgement since none of us are perfect. I'll try my best to do the same.

Three Weeks Depression

I have written a lot about being a Pastor on this blog, but in general I try my best to avoid talking about my work as a teacher because in the big scheme of things I have found that in the long run it just doesn't work out well (people tend to get fired for blog's they write about teaching). However, because of recent events I find myself unable to move forward without talking about teaching.

In the last eight months I have seen the initial consequences of common core reverberate through our school system. Under this new model administrators are constantly stressing their staff out with changes infinitum and then being angry with them for acting stressed. This new model pushes for results that are not realistic for any teacher to meet and constantly draws the teachers attention away from their most important task, teaching. The resulting pressure put on brand new teachers is enormous and it does not help them grow, then they are denied tenure for not being able to meet what were from the onset unrealistic demands.

The consequence for me though has been that those that have been hurt by this new system come to me in crisis. I have always attracted people struggling with their life (people feel comfortable talking to me) so this was not really a surprise for me. I have when asked advised as best I know how and served them to the best of my ability. My proactive support of what are an amazing group of teachers has had consequences....

These consequences have been incredibly stressful for me for two reasons. First, because I have been sick and my body's ability to respond to stress is low thus I have become more fatigued and tired.  Second, because the the stress is coming from someone that I used to respect greatly and now I feel betrayed. Today though I saw this quote from Albert Einstein, "In the middle of every difficulty lies opportunity".

I am glad that I did what was right as an experienced educator and stood up for those who needed help. It was the right thing to do! I am happy I was there to serve those who have less experience and needed someone to talk to! It was the right thing to do! Now I will start looking for a new opportunity in teaching in which my skills as a Mentor and leader will be seen as a value and not a liability. 

People

I have noticed in the last few weeks that there are lots of people who think they are right. I don't mean that they are pretty sure they are right and are willing to hear the other side of the issue. I mean they are 100% sure they are correct.

DANGER WILL ROBINSON!!!!!!

When you start thinking like that it is a sign that your EGO has outstretched you ability to think logically. Which is fine if you realize that is what's going on and your willing to accept the consequences of your choices.

Be careful though, because those that ignore the counsel of others, that disregard the experience surrounding them, that destroy those who disagree with them all for the benefit of personal gain soon find that themselves all alone (ask Donald Sterling).

Someday you will need other people and if your not careful there will be no one left to give you a hand.

ECD Update

I recently spent some time chatting with three new people who were recently diagnosed with ECD (Erdheim Chester Disease). They were speaking with me as if I was an expert, but the fact is it hasn't even been a year since I was first diagnosed.

It is amazing how fast one becomes an "expert" when one needs to be.

Since I was informed that I had this disease (that seems to be a cross between cancer and a autoimmune disorder) it has hampered the proper functioning of my pancreas, blocked my spleen, invaded my testes, caused bone hardening, and spread throughout my retro peritoneal cavity.

The medication I am taking to stop the growth of the ECD is called Kineret (it is injected daily) and it seems to be working. There is no hope for a cure at this point, a standoff is the best that can be hoped for. Unfortunately the side effect of this drug is that it has destroyed my immune system. This along with a whole bunch of random genetic immunological deficiencies I found out about while at the NIH does leave me a little concerned about my ability to stay infection free over the long run.

The doctors have also diagnosed me as having pancreatic enzyme deficiency and I have started to take medication that should help me eat a more varied diet. The idea is the enzymes will help my body process the food I am eating and help me maintain/gain weight. The problem is I don't think its working (my stomach hurts right now as I type this). Fact is the more normal food I eat the worse I seem to be feeling.

I have been experiencing a lot of muscle weakness and fatigue recently but haven't brought it up with the doctor yet. I just don't want to deal with them for a while. I would guess that this is related to my diagnosis at the NIH of having low testosterone, but since I am not a candidate for testosterone replacement therapy I'm not sure there is anything that can be done about it.

So I would say my current status is stable with problem areas that need to be addressed in the next 3-6 months. I need to see a immunologist, gastroenterologist, hematologist, urologist, and stop in at JHU for my 6 month exam. Don't feel like doing any of it at this point. I think that with some medical issues being proactive is a waste of time because none of these schlubs really want to get involved until things are bad.

Immunolgy

I was supposed to have an appointment with an Immunologist today but when I showed up and introduced myself I got one of those weird looks from the receptionist that let me know there was something wrong. Turns out the appointment that I thought was for Tuesday at 5:45 pm was actually for Wednesday. The real killer is it took 2 months to get this appointment and she says, no problem I'll have someone call you to reschedule, when we all know that's not going to happen and I am going to have to fight to try to get another appointment some time months from now.

SO...I was mad. Mad because they screwed the schedule up. Mad that she wouldn't reschedule me right then. Mad that I couldn't make the appointment the next day. Mad that everyone else thinks their time is more valuable then mine. Mad that I have been getting mad so easily. Mad that I have to keep SEEING DOCTORS WHO ARE DOING NOTHING FOR ME BUT WASTE MY MONEY AND TIME!!!!

So I went and picked up Bradley and Keegan from soccer and I was frustrated, angry, sad. DawnMarie was worried. I don't like being like this. I don't like the lows and highs that have become part of my normal. This is not me...except it is me. Honestly though if I really needed to see an immunologist I can just wait until I need to go to an emergency room then I will get some quality face time, no appointment needed.

Be Soft

I will not let the lies, bullying, and hypocrisy of other make me bitter. I will not let the lies, bullying, and hypocrisy of other make me bitter. I will not let the lies, bullying, and hypocrisy of other make me bitter. I will not let the lies, bullying, and hypocrisy of other make me bitter. I will not let the lies, bullying, and hypocrisy of other make me bitter.

Miracles Happen?!?!

As I sit in my office this morning I find myself compelled to share something with all you Christians out there. What I want to talk to you about is miracles. As all of you know I have been sick and I would certainly love to be blessed by miraculous healing.  In fact I hear this desire for a miracle every time I talk to someone who is sick (as a Pastor that happens a lot).

We hear a lot about miracles in our world today. In fact many of us at one time or another will come to a point in our lives when we need/when we want a miracle.

I’ve got good news for you. God is still in the business of working miracles. I have been spending some time thinking about what is a Miracle?

My first thought was that miracles are amazing – so when someone gives DawnMarie and I a plant and it is still alive a few weeks later then that would be a miracle right!?!? No. It may be amazing. But it is no miracle. It is amazing that someone could hike the whole Appalachian trail, but it is no miracle. A parking place that is closer than 5 rows back from the front doors to target is pretty amazing and extremely rare, but it would be no miracle.

You see miracles are something that can’t be explained! I saw a news report on Friday about a man who damaged the cornea of his eye, and he lost his eye-sight. He went to a specialist at John Hopkins that made a lens to fix his damaged eye, and as soon as it was inserted, he could see again. When the patient was telling about his experience, he ended with these words: “It’s a miracle!”

Was it a miracle? No, because how it happened can be explained with the understanding of modern medicine. Amazing and wonderful, but not a miracle.

It seems to me that a miracle has to be something that is rare, if you look through the pages of the Bible, you will not have to look very hard to find miracles – and lots of them. Well then how can I say that miracles are rare? If we were to go back and search through that whole bible we would find reference to perhaps 37 miracles performed by Jesus and perhaps 80+ other miracles in the Old and New Testament.  That’s 117+ miracles spread out over thousands of years, which makes miracles rare.

Anything that is rare is valuable and precious and has great significance.

Our temptation for one reason or another is to turn everything into a miracle. You see when you call everything amazing a miracle, then you cheapen the value of miracles.

It’s kind of like what we do with the word “love”. We use it very flippantly. We say things like, “I love my new car, and I love that Chinese place on the corner, and I love chicken sausage.” And then I turn to my wife, DawnMarie and I say, “I love you.”

And that gives her all kind of warm fuzzies????

I mean, think about it – I’ve just told her that I feel the same emotion for her that I feel for a piece of pig intestine that has been stuffed with ground chicken.

Can I make a suggestion to you? When you see a beautiful new pair of shoes, or you hear about a confluence of events that resulted in two long lost friends reuniting, call it a wonder. They are a natural result of the laws that God set into motion when He created the universe. Call them amazing. Call them incredible. But don’t call them miracles.

Miracles are rare. Miracles are special.

Miracles don’t happen that often. So don’t get mad when you don’t get one. Instead live in His grace every day, accepting the life you been blessed with.The alternative is to spend every moment hoping that something might happen, while missing everything that is happening around you.

T-Ball

Bradley and I walked in the T-Ball parade again this year (the total distance walked was just under a mile). There was half an hour worth of standing on both ends of the parade route and it wore me out. At one point when we arrived at the park I was a little panicked as I looked for DawnMarie because I wasn't sure how much longer I was going to be able to stand. This lack of muscle mass thing is starting to get to me. I need to find out if I can improve my current state of physical fitness even though I have low testosterone.

Stop Thinking

I have the hardest time turning my brain off. It just clicks along thinking about this, then that, then what would happen if this then that. This didn't use to be much of a problem because to be honest my life was simple and there just weren't that many variables in flux at any one moment. Now a days though...things are crazy and sometimes all I really want is to be able to just not think too much.

Forgive

High Standards

I am feeling a lot of pressure right now. The type that presses on your chest and doesn't let go. The type of pressure where a thousand little things start to consume your every thought. Yet no one thing is worthy of more then a moments passing concern. 

I think this is in part due to legitimate external factors that are beyond my control (health/work). The thing is I also heap on extra pressure of my own accord. 

Tonight for instance I led a bible study that was less then ideal (it was boring). I wanted to provide a fun filled midweek activity and realize that I didn't do that this week. 

I am beating myself up right now about the missed opportunity, but will have to let it go and try to do better next week.

Renewal

Winter with its long dark nights and snow covered roads has passed. The trees are still bare but if one looks close renewal has begun. In the yard tulips are blooming, fresh buds have appeared on the beech trees, and the quiet harmony of the morning birds have returned to our street.

Things are certainly blossoming for our family. We are but a week or two away from receiving final approval for our 800 sq. ft. addition (which will give us the additional bedrooms we desperately need). I am expecting to hear about a doctoral program I have applied to and I am seriously considering some new opportunities that have been presented to me recently. Soccer season has kicked into high gear and the long hot days of summer are certainly not far away.

My health, which last year at this time looked dire has stabilized. After a year and what seems like countless doctors visits things seem to be coming under control (as much as one can control a disease that is idiopathic in nature, has no cure, and is rare).

My daily Kineret shots seem to be holding the ECD from progressing, my Creon pills have restored my food options to 80% of what it was before (the other 20% consists of things I should not be eating anyways), and the nightly magnesium supplement strips most of my bone pain/muscle soreness away.

The winter has passed! Spring has begun, but I cant shake the personal notion that the dark and cold are not that far off. I can't stop thinking that the means of my death lives in me. I carry it around with me every day. I nourish it with every bite I take. I am the host of my own demise.

Please don't think that I am depressed, I am not. I am just finding the transition from crisis to long term management harder to make then I expected. Perhaps though the longer days and the warmth of spring will free me from my own worst enemy, myself.

Pressure

It is Monday and with only a few days left of Spring Break my focus has started to return to my classroom. I have my final 6+ week of class between now and the end of the year exams mapped out, but there is so much to cover and so little time. It is my first year teaching this topic and I find the pressure to provide my students with a top notch education while also meeting ever changing State and Federal standards to be intense.

I am glad my weight seems to be coming under control and my overall stamina is improving because I think its going to take a hard push between now and the end of the year for my classes to meet their full potential. Lets just hope we can maintain our focus and not allow anything outside the classroom to distract us from the ultimate goal of helping each student maximize their potential.

Sunday

Sunday ended a long week with a service that was well supported musically, with a sermon I was not in love with, and with by far the largest single service attendance FUPC has had since my arrival (we were just short of 130 people in attendance on Easter Sunday). It was with mixed emotions that I went to Easter Lunch at my Mother In Law's house. I felt like my work wasn't done...that there must be something I have forgotten.

Holy Week went very well this year. There is no doubt though that I have a long way to grow as a Pastor, Husband, and Father. I have found that these three parts of me often fight for the same physical and emotional resources. This makes trying to figure out what to do difficult sometimes.

This week I beat myself up wondering what I could have done to improve participation in Holy Week events. I realized that I was not fair and transparent with my wife about what I expected from her over the course of the week. I found that while this Holy Week was by far the most well planned one I have had so far there were still a lot of details that got dropped or were not properly anticipated. 

Oh how far there is to grow...

Easter Sunday Jitters

I am struggling with the message for Easter. It is the day in which we celebrate Christ rising from the dead, but it is also the day we received a message we are called to share with the world (that Christ has risen). There must be balance in the way in which this message is shared with the congregation and all I am feeling right now is disappointment in their unwillingness to participate in the services we held throughout the week.

That is not the right tone to take with a congregation filled with once a year visitors and out of town guests. Yet...there is certainly a responsibility placed on the Pastor to speak the truth in love. There is a fine line though between righteous rebuke and resentful jerk. I hope it is a line I can successfully navigate. If not I will have missed an opportunity and hurt my ability to serve this congregation.

I know some people think that the Pastor just pops up and speaks each Sunday, but I find that the task of preparing for the weekly sermon is draining, inspiring, fulfilling and filled with potential miss steps all at the same time. May God guide me and all those still finishing their Easter Sermon. [Or you could do as my Father in Law suggested, "use the one from last year no one will remember"]

Good Friday

Good Friday service was great today. As a Pastor I rarely get to hear others preach, so getting to hear five Pastors and one Elder preach in the course of one service was a real treat. 

In the past I would have found it hard to "hear" the message shared by other ministers. My life view was so filled with judgement that it was impossible to be present in the moment. This Good Friday I heard some amazing and inspiring words and I also heard some theology I don't agree with, but each preacher brought something of value with them to the pulpit. 

It's taken me 37 years to figure out that there is value in all relationships. Yes, even with someone I don't agree with on all things. 

This is huge for me. 

[Now I just need to learn to accept the congregation I serve the way it is. Instead of driving myself crazy trying to figure out why a church filled with such amazing Christ filled people isn't standing room only every time we open the doors.]

Maundy Thursday

I took part in a wonderful Maundy Thursday service this evening. It was the first in a series of four services between today and Easter (Maundy Thursday, Good Friday, Son Rise, and Easter Services). 

The music was perfectly executed by a wonderful bunch of musicians and my only disappointment was that there weren't more people present to enjoy the performance. 

Tomorrow's Good Friday service is going to be a long but exiting day. I find that I am nervous with anticiption for what the day will bring, you see the tension about the unknowns is always a little maddening (unknowns like attendance, potluck, preachers). 

On a positive note, I saw a whole bunch of people tonight who hadn't seen me in a year and no one mentioned my weight loss or my health. 

I hope this trend holds tomorrow and I am able to keep the focus on others and off of me. I really do hate being the center of attention (said the guy who stands up front and preaches). Seriously though, if all goes well tomorrow I will be able to relax a little and a lot of the pressure will be off.

Just got to keep plugging along. 

Liberation and Escape

My favorite artist just put out another cartoon that perfectly explains why reading is such a powerful tool and he did it in just 10 words. 

Check it out here...

149. MOTHER JONES: Sit down and read

I don't know about you all but for me reading provides escape, laughter, brain food, and has always been such an important part of my life. 

Some people see it (reading) as a chore but I have always thought it was amazing. In fact one of the suckiest parts of being an adult is there has been less time to read. 

Define

Many of us claim to be good people with our words. If asked we might say that we try our best to be good to others, that we would help those in need, and we would certainly insist that given the opportunity we would back these verbal intentions up with real world action. Yet far to often when the opportunity to prove our words are true presents itself we fail to live up to our own billing. 

Today I had the opportunity to prove my words...to prove that I am actually the "good person" I claim to be.

While out picking up matching towels for the bathroom from Macy's (we had some gift cards) a woman dropped her wallet. I picked it up and there had to be 30-40 hundred dollar bills in it. 

Now listen... 

1.) I am not rich and could certainly use the money. 

2.) The woman who dropped the wallet had spent the prior ten minutes yelling in Bangla at her family, giving me a bad headache while I was waiting for the cashier. 

3.) No one saw the wallet but me. 

4.) I wanted to keep that money. 

So I picked it up and gave it to my four year old to return to the woman. I wanted her to see what we do when we find something that is not ours. I wanted her to know her Dad is a good guy. I wanted to prove to myself I am a good guy, one whose is capable of ignoring my base desires so that I can do what is right. This time Good won!

The fact is we all have moments in which we can prove our words are real. Be it our generosity, our love for others, or perhaps even our faith. I hope you all do well this most holy of weeks in enduring your words match your deeds. 

God Bless.

Not So Easy

I was reminded today, after a friend came to visit, that no matter how old one gets the nagging question of who you are and what your purpose is still pops up. 

This might be because the answer to these questions change for every season of our life or it could simply be that as we grow in wisdom and in age our understanding of our calling on this earth grows with us. 

Marianne Willamson points out that this evolution of understanding is okay...that it's part of the process. 

She reminds me that If we wait for clarity before we are willing to begin the journey then we will find years later that we've done nothing and gone nowhere while waiting for the clear path to be laid out ahead if us. 

Lenten Exhaustion

While most of my teaching colleagues are off to enjoy a week of sun and fun somewhere far warmer then NY I am preparing for Holy Week. 

I love Holy Week!

But...I'm not the energizer bunny that I once was. I felt this hard truth today. Yesterday we met to prepare the hall for our Good Friday potluck and by the time worship service ended today I was DONE (sore in my hips, arms and legs/pure exhaustion).

I am going to have to pace myself this week or I won't make it. 

On Wednesday we have our last Lenten Soup Supper, Thursday is our Maundy Thursday Service, Friday is a 12-5pm Good Friday Service, and then it ends with a long day on Easter Sunday. 

Sounds like a lot (because it is!), but I am excited. Holy Week is filled with passion, hope, and love. The best part being we participate in it as a church family. 

Slow and Steady then will be the task. 

Truth

Focus

Having a hard time focusing on what really matters. I find myself distracted from what is important by the negligence and inexperience of others. 

Sigh...why do we make everything in our society so much more difficult then it needs to be? 

- New prescriptions are a pain to get started. 

- Injectibles come through a seperate provider. 

- Dr's appointments are in the middle of the work day.

- I am constantly prevented from getting things done by people who have little experience and even less common sense. 

-My Dr.'s and Insurance companies can't seem to figure out how to work with each other.

And it goes on and on.

Folks, we don't have to accept all this drama as the new norm! Things don't have to be this way! 

Moody Day

Having one of those days where I feel like I am never going to stop being angry. Problem is I can't tell if I'm rationally upset about a purposeful slight by a rude person or irrationally responding to an imagined insult. 

Welcome to the crazy world of someone living with low T. 

Purpose

I don't know about you but I've always felt like there was some sort of master plan for my life. I believe now that I understand part of that plan... that what I am being called to do in this phase of my life is to live my diseased life so that I might understand the suffering of others in a more intimate way.

For example, today I spoke with someone whose loved one was hospitalized because they stopped taking there medication. I didn't take my pills today. I know I need them, I know they are helpful, I don't want to be on them. I can empathize with this person. I can understand wanting to ignore all the logic because of ones gut desire to be done with it all.

Tomorrow I will give myself my 245th Kineret shot. If I live to be 70 I will have had to give myself 12,006 of these shots. People with diabetes understand the life the shot gives and the pain that it causes, the freedom it takes from you. Now I understand their walk just a little but more.

Maybe the secret to life's plan for us all is that there is no grand plan, no one huge thing we were put here to do. Perhaps our life's purpose is to do the best we can every day...and that's good enough. 

Moving On

Found myself getting upset again this afternoon (because Brad wasn't listening and wouldn't stop talking) but I was able to get a few minutes of peace and relax a little. Then we went for a walk and had some frozen yogurt. 

I'm not perfect. I know this, but when I fail to be the best father I can be it upsets me. Heck when I fail to be the best "______" it upsets me. I suppose the belief that perfection is even an attainable goal is the curse of being a Crump.

It is something I am going to have to get over soon though before my failure to meet my own standard drives me nuts. 

Lost

I got my lab work back today. They take a circuitous route from near my home where the blood is drawn, to a local lab that processes the order, to JHU where the results are sent, back to me when my doctor's PA sends me the results. 

She has provided me with feedback the last two months (generally saying things look good considering...) and then asking for an update on how I am doing. 

I have tried to respond a few times but ultimately deleted the email. 

What should i say? That I am physically able, but emotionally a wreck. That I'm taking a new pancreatic enzyme but I can't trust the doctor or my own judgement enough to tell if it's working. That I rage out at my kids, but that testosterone treatment is not possible! 

What's there to say when the way I am is the best it's going to get and that's not good enough?

The Walk

In church today the sermon was about the difference between wishing and praying. After spending a week preparing for the service here is what I have come to conclude. 

When we wish we hope for a magical act that will change our life in a profound and substantive way. 

When we pray we invite Christ to walk with us. In doing so we change the course of our life in a profound and substantive way. 

I for one will walk with Christ. 

Tsunami

I have a new friend in Switzerland named Bengt, who also has ECD (and his own collection of odd dysfunctions that seem to come along with it). Bengt and I Co-chair one of the committees serving the ECD Global Alliance. I had the opportunity to speak to him yesterday for quite some time using Skype and it turns out he was diagnosed with the disease about the same age I was. In his case though he was the first person in his country diagnosed Erdheim Chester Disease. 

Bengt speaks what he calls Swenglish (Swedish English). He says this because he has a strong accent, an accent which many people have difficulty understanding. It just so happens though that I speak Swenglish!

My talk with Bengt reminded me how much wisdom there is within our own disease community. For example I was telling Bengt how frustrating I find the notion of harboring this beast (ECD) withing me. That it troubled me to think that at any moment it could start to grow again and there was nothing I could do about it. 

Bengt said, "This disease is like running from a Tsunami." 

The implication being that one is fine as long as they are running, but as soon as you stop the wave will get you.

I said, "It's exhausting though...running all the time."

To which he replied, "what choice do we have?"

The answer of course is run (go to the doctor, take the shots, fight the insurance company, order the pills, see the specialists, do the blood work, support research into a cure, rest) or stop and succumb to the disease as it grows unchecked. 

The answer seems obvious, right? Things become less clear though when one starts to get tired from running.

Death Fails

Letting Go

Had a great conversation today with my doctor today about the importance/insignificance of why.

I find that I am struggling to live with not knowing the reasons why. Why did I get ECD? Why is my spleen blocked? What caused my immune system to become deficient? What's wrong with my pancreas? 

He says...live with it. 

I however can remember working on old Studebakers with my Dad. Often times we would find ourselves looking for a fix before we were sure what was causing the problem. Once things were narrowed down then we were able to pinpoint the cause of the problem. 

This new pill along with my daily shot seems to have provided me relief from what ails me, but now the question arises. What's causing the problems to manifest themselves is the first place? How can I change my lifestyle to better prepare for a lifetime of living with this disease. Does any of this matter? 

To me it does. 

Miracle Drug?

Someone asked me tonight if my pills work. The fact is I just don't know for sure. I feel able to eat more food when using them but they have not completly eliminated the pain I get in my sides and. back while eating. 

Should they? I don't really know. 

Good news is my weight is up a few pounds and I am going to see the doctor in the next few days. 

Easier Said

The problem isn't that I'm impatient. The issue is I don't know where "there" is! 

I find myself wondering...is this the best I can hope for? Is the disease ever going to spread? What's going to go wrong next? 

I can be patient...but when your waiting for the next shoe to drop it starts to drive you crazy. 

Combo

Was able to babysit, work at the church, and then take the kids out for dinner. I was productive and useful, big win!

Makes me wonder what other things I'm doing the hard way that could be made much easier. 

Long Week

This is the end to one hell of a week. From work drama to mental exhaustion it has had it all. I'm not worried though because I am sure things will get better. I am starting the week off right with an early bedtime and a crockpot full of chicken sausage and yam stew cooking downstairs. 

This week I hope to live with more balance and peace. Hopefully I will find some time to check in with my doctor for new blood work and a basic exam. 

Otherwise it's all about learning to live with all this as my new normal. Easier said then done when your a stubborn Crump. 

Filled with Upset

"Feeling overwhelmed by anger and sadness. There is something wrong with me." 

I wrote this in the morning and I am feeling much better now. I was so mad this morning (for no reason). Not violently mad but just filled with upset and sorrow. 

What's crazy is that I knew my balance was off but couldn't shake the mood.

A bunch of people texted and checked up on me (thank you).

So many people have told me that it is going to take time to learn how to live with Erdheim Chester Disease, Pancreatic Enzyme Deficency, Splenomegaly, IGA Deficency, and Low T.

The problem is that I'm not sure this is something I really want to learn to live with. 

Giving Your All

I have been feeling better as of late and as such have started to pick back up more of the familial obligations. 

I am trying to do my share of the ironing, trash, dishes, taxi duty, and just be generally more present in the lives of my kids. The thing is though...it's to much!

It's not to much for me to handle physically. I'm just not willing to give my whole life up to the constant rush of running from one event to another all the time. It doesn't work for me or for my relationships with others. It doesn't make me a better father and it certainly hasn't helped me be a better husband.

The thing that bothers me most though is that it seems to be getting worse every year. It used to be that we fought to keep at least Friday clear but now even that last bastion of peace has been stollen from me. 

I am done. 

Dad's on strike!!!!

If you want to join me you'll find me here at home sleeping, reading, and generally just doing less. 

[Update: Some have applied that this is an attack on DawnMarie. This would be a poor assumption. This is an attack on how we all live our lives now a days. With no time for renewal, family, or self. And we are surprised that families are falling apart. Call me selfish if you wish, but I refuse to live on the edge of burnout any longer.]

Impossible Honesty

AS A PATIENT I have found in the past few months that I am the most effective advocate for myself when I am honest with the doctor. Sometimes that means explaining to the doctor why my eating, living, working, etc might be masking what is a much larger problem and other times it means being honest about my true pain level (which I always rate low) while explaining that I have a high tolerance for pain. 

This honesty has led me to a long series of Indiana Jones type doctors. The type of doctor who wants to hear it all before embarking on what for me seems like an epic quest to discover all that ails me. 

My honesty has helped them help me because by being honest I have been rewarded with better health. 

AS A PASTOR I spent my first few years trying to look like I knew what I was doing. I worked hard to look "holy". I just figured it went with the job. In doing this I ended up not being authentic and that hurt my ministry. 

Now as a pastor I live my life as a open book (out loud as they say). I share my victories and my defeats, my ups and my downs. 

My honesty has helped people trust me and made me a better pastor. 

AS A TEACHER I am surrounded by a legalistic structure that hampers personal growth through learning (we do learn from our mistakes after all). This structure meant to protect students breeds miss trust among colleagues and administrators while at the same time hampering open dialogue. It makes honesty and openness impossible.

In our effort to protect kids we stop the  healing and growth that can only come through acknowledging our errors and growing from them. Thus hurting our children by hampering the development of their educators. 

I write this because I am frustrated, but not without hope that there is room for more rational minds to prevail on this issue. 

[Pardon my rant and I apologize if this post makes no sense.]

Who Inspires You?

Who inspires you with their light?

Have you ever told them?

You should. 

I find it's easy to say the hard things. Its easy to criticize, get things off our chest, unload our anger. But to turn to someone we appreciate and make ourselves vulnerable by admitting we care is a much more difficult thing to do at times.

Yet since not a single one of us know how long we are for this earth why walk around leaving things unsaid?

To Frank

I am not sure if the confidence and strength I have gained from being I'll is always a good thing. 

Fact is that people seem to prefer a world where no one really speaks their mind and instead shares vapid platitudes with each other. Of course I am not the first person to ever notice this phenomenon, just been thinking about it recently. 

What I find really weird though is how people "ask" me for my opinion and then act surprised when I give it to them or when they tell me what we are going to do and then act hurt when I have input. 

Oh well, feeling confident. Proud to be a Crump. 

[Just so you know I have considered the fact that I'm "crazy", that I'm being unreasonable, and I've given my frankness some consideration to ensure I'm not just being rude. Turns out it's not me it's everyone else. Love you all and have a great night 😀 ].

People Problems

So a coworker told me that he saw my arms yesterday and that my muscle mass was ehhhh (which was then followed by a face that said your gross). Then it was suggested that I get to the GYM. 

Seriously! What rock has this person been living under? I tried to explain my situation but faltered under the anger and embarrassment. 

I am not proud of my weakness. I don't enjoy the fact that I can barely hold my son, that I get exhausted sweeping the driveway, or that I am to week to do some of the household chores that fall into the father/husband category.

I am ashamed but not ignorant. I know that at this point maintaining my weight is more important then how I look. I know that my blood work has indicated I am in no way prepared to lift weights. I know that my testosterone level is low enough that I will need to be monitored by a physician when I start exercising again.

So to my coworker I say this. 

These are the arms of a MAN that has lived through a year of hell. 

This is the bicept of someone who lost 110 pounds in 9 months. 

This is what surviving looks like. 

Coming To Terms

I am eating more now then I was a week ago. My weight is steady for the first time in months (145). This new drug Creon is good, but I am still having pain occasionally in my back after eating.

I talked with DawnMarie tonight and we are just not sure what to do next. I could continue to use Creon even though I have not been diagnosed with any reason to take it (other then anecdotally). Alternatively, I could go to The Pancreas Center at NY Presbyterian Hospital and have them chase the root cause down.

Thing is...does it matter? If the drugs work who cares (said the guy trying to convince himself that the why isn't important). 

My Life

Normal

Things have been abnormal for a year. During this time we have meticulously followed ever medical lead, pouring over the details of every test. We have trecked all over the country visiting any doctor we could find that might help me. 

During that time we have discovered that I have ECD, am immune deficient, have an enlarged spleen, lack the appropriate pancreatic enzymes, and have low testosterone. So overall I would say things are going well. Seriously, despite all that things seem to be on an upward trend. 

Today for the first time in a long time I found myself thinking, I have energy. On a Friday! I have energy! 

The fact is things are never going to get. back to normal (my portable pharmacy of shots and pills is proof of that), but I'll take this as my new normal. It's better then one would think my life would be with so many issues. It's better then I dared to hope for a year ago. 

Rare ENOUGH!

As I begin the process of researching yet another disease (pancreatic enzyme deficiency or PED) that I have just recently been diagnosed with. I find a few random thoughts are tumbling around in my brain.

First, you would think that at some point I would be diagnosed with some sort of health problem that is common and for which a well developed treatment protocol has been developed. Nope. PED is rare, yeah!

Second, that in 2014 (even if the disease you had was rare) it would be easy to research any medical condition. Unfortunately it turns out that in the medical field so much of the information one needs is hidden behind pay walls for private medical journals.

Third, it is surprising that there aren't more groups whose primary goal it is to support people with rare diseases. 

It is clear to me that there is a lot that needs to be done to advocate for those struggling with all sorts of health issues (from issues of access to problems with being misdiagnosed). The question is how can I best serve a rare disease community with such diverse needs and such differentiated diagnosis?

How can I change this corner of the world that I am now a part of.