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.