Feeling Small

What is it about larger then life objects that we like so much? I think the answer may simply be their funny looking and therefore fun to play with but what if the answer is more complex? What if there is something about these large chairs, tooth brushes, and clothes pins that we find soothing because they make us feel childlike, make us feel small?

Giant Deck Chair at Olympia Hands On Museum

I don't know about you but I like feeling like I'm a kid sometimes. That's why going home is so nice because for just a little while your the kid again and your parents are in charge. There are no clothes to wash, no meals to prepare or dishes to be done, and most importantly there are no decisions to be made.

It occurs to me that the reason everyone says men are such babies when they are sick is because of this same phenomenon. When were sick we get to feel protected, nurtured and get the pleasure of having someone else care for us! I have to say it's nice to feel cared for.

The truth is that life can be hard and being an adult certainly comes with its own set of challenges (mortgages, bills, marriages, children etc.). Perhaps we all need a break from the big realities of life and we should take those breaks whenever we can find them. So go ahead and revel at the Huge Shuttlecocks installed in Kansas City, MO. or have fun using your Giant Pencil (you know the one you got as a joke but have never been able to throw away), because sometimes we just need a break from the large shadow life casts.

Prednisone = dEVIL

I truly despise prednisone for the way it affects my mood. I am pretty sure the prednisone is what is causing me to be tired, snappy and sometimes just plain mean. Just yesterday I honked at a woman for letting people cut into our lane in front of her, which resulted in us getting stuck when the light turned red again (and I don't mean one short beep either). 

Today i turned the car around on the way to IKEA, went home and dropped off my whole family (some might say that I kicked them out of the car). The scary thing is I was still mad for like three hours. This is not like me! I do not normally behave this way! Sure I can sometimes be abrasive and have rarely been known for holding my tongue, but I'm not a mean or angry person.

 What concerns me most is where does the prednisone stop and Brad begin? How would I know what is truly me and what is caused by my medication? I am currently on a predisone weaning schedule to remove the drug from my system, but what if I stay angry when the prednisone is gone? What if I can't wean off of it all the way? I've noticed that the less I take the more pain I feel and I'm worried I may get stuck on some low maintenance dose.

I think the worse part is that my wife takes the brunt of most of my moods and she certainly doesn't deserve it. I feel guilty because I know that at some level I should be able to do better, to be better!

Drugs are a necessary evil at this point in my disease process but I pray for a day when there will be no pills to pop or shots to take.

The Elephant In The Room

Had a good friend drop by today for a few hours just to hang out. The best part was that he started the conversation with, "so tell me about the elephant" (referring of course to my ECD). I would guess that people often want to ask how others are doing with their personal issues, whatever they may be and just don't know how to start the conversation.

As a Pastor I have never had this problem, it seems to be expected that I will speak with people about the most personal moments of their lives. I have learned a few things though that might help.

First, people are pretty good at explaining their own limits, meaning if they don't want to talk about it they will let you know.

Second, most people are desperately seeking for someone to show they care.

Third, we often think that people are probably already being cared for, talked to, or helped by someone else. This is normally not true!

So what did I say when asked about how I was doing? I gave him an update, talked about my frustrations, shared my concerns, and explained I looked forward to the PET scan I have scheduled for 9/5 because it will define the extent to which this disease process has spread (or not). Are things great for me right now? Not really, but talking about it doesn't change me or hurt me. What it does do is let me see that people care.

Show people you care this week by sharing in their life (both the good and bad).

Blog Information

I just wanted to let everyone know I appreciate all the comments, thoughts, prayers, and concerns. I have change the comments section of the Blog to make commenting easier. So go ahead and share your thoughts. Send me an email if your having problems commenting and I will try to fix it, bradleycrump2@gmail.com .

Insomnia and Randy Pausch

I was having a bad case of insomnia last night, didn't get to sleep until 4am. I couldn't get past the feeling that I'm going to die soon. So I googled inspirational deaths (a little odd I know) and this video by Randy Pausch came up. He was a professor at Carnegie Mellon and this is his "last lecture". It is well worth the time spent to watch or if you would rather it is available in book form.

Link: http://youtu.be/ji5_MqicxSo

How are you doing...FINE!

How are you doing...fine.

How are you doing...fine.

How are you doing...fine.

Bad day today so I'm going to rant.

I find that I am to easily swayed by changes in plan and in other peoples moods. I planned to set my classroom up today but they were waxing the floor so that threw my schedule out of whack.  As for peoples moods, at some level I know that we should all care how other people are feeling but at some point I think you just have to let it go. The problem is it starts to make me mad! I think, "your wasting a day being grumpy and rude and who knows how many days we have". Because seriously we don't know how many days we have left.

I'm fine right now. That's what I tell people anyways when they ask because what else are you going to say right! The truth is my stomach hurts when I eat to much food, so eat less food you say but I'm loosing to much weight....so there lies the rub (funny old saying right). Also my hips and back are hurting again, but we can't do anything about that other then tolerate it so why complain. Finally, I hate Prednisone but I just found out I wont be off of it until the end of November.

How are you doing...fine...in the big scheme of surviving and living with things. If your dealing with a rare disease or are surviving/fighting cancer then you probably know what I mean. If not... then I'm fine.

 What do you say when the answer is actually very complicated? I need some help on this one.

Insulted by a Walrus

When a giant Walrus sticks its tongue out at you its hard not to smile. Now if a person stuck out their tongue at you you probably wouldn't get upset (because that's just a crazy thing to do), but there are other things people do that make us sad, mad, and yes even angry.

Walrus - Point Defiance Zoo and Aquarium

I could be something simple like not acknowledging the large role you play in the success of your workplace or it might be something small like a perceived slight. The fact is we far to often let other peoples actions determine our reaction!

How many of you have a family member that is really good at stirring up trouble? You know who I am talking about right. If we can all name the person and we all know what they do then why do multiple people in one family let that person stir the pot by listening to them?

How about that coworker that just seems to rub everyone the wrong way? You know who I am talking about, the one who is always late to meetings then without having any idea whats going on loudly proclaims their viewpoint in such a way that implies your stupid if you disagree.

Imagine if every time someone did something to offend you instead of getting angry you just imagined my friend here the walrus, sticking his tongue out.

But its different you say, because these people are effecting your life, your, family, your ability to earn money! Only because you let them! No one can force us to react unless we choose to, remember that.

TEAM Work

I took the kids to the Tillamook Cheese Factory recently where I snapped this picture of the production line. For those of you who don't know this small dairy cooperative in Oregon produces some really amazing cheese. Interestingly just moments after taking this photo the whole line came to a stop. As we walked further on we saw that the whole line had come to a stop because of one person (the cheese wrapper) was having difficulty keeping up. The consequence, every person on the line was forced to stop their work. Withing thirty seconds though there were two more people helping this person get caught up.

Cheese Production Line

Ever since I got sick the people at First United Presbyterian Church of Queens Village have done an amazing job of making sure that everything continues to run as it should. My medicine has left me more susceptible to getting infections so they have made sure that everyone who is sick gets visited by someone else. They know I get tired easy and have made sure I don't need to take out the trash, move tables, or rearrange chairs (Pastor's do that type of stuff just in case you didn't know).

They are my extended family and an amazing group of people. Yet our growth over the last two year has nothing to do with how nice they are or how compelling my Sermon's are every Sunday. We are successful because we work together as a TEAM always keeping our eye on the Lord. In our church that means always being a servant, helping the needy, and welcoming the least of these.

Just like the TEAM at the Tilamook Cheese Factory we know that it only takes one person crashing to take the whole system down, so we support each other. Who do you support that helps keep your system (life) going? Could you be doing more?

We Love To Hate

My brother and I rarely see eye to eye, as long as I can remember it has always been that way. We're not allowed to play cards against each other (by my Wife's decree), once we had a wrestling match over the safety of roundabouts, and don't even get us started on the safety of retirement benefits. I'm not sure why, but we just can't seem to back down from an argument when we both believe we are correct. I should hate him for this right!

Air Hockey at Chuck E Cheese

But look...here he is on his knee's playing air hockey with my son. The same guy who can't let me win an argument let my son destroy him at air hockey. I watched the whole thing from my chair ( I was having a bad day ) and when he got up I could tell his knees and back were bothering him but he stilled played games with him for another hour. That's not the actions of a bad person.

You see no one is perfect, in fact I am willing to bet that your not perfect! So why do we expect everyone else we interact with to be better people then we ourselves are capable of being?

Marriage and Erdheim-Chester Disease

Later today my sister is going to marry this man, Robert Owens. They will be married in a wonderful little ceremony this evening surrounded by family and friends. How do I know the service will be wonderful you may ask, because I am the one doing it. It is a privileged to officiate this wedding, after all it is not every day that you get to bless your own sisters marriage before God and Family.



 I look forward to today and all that it brings, but my role in their marriage will quickly end. They will have to deal with everything that happens after today, like the blending of their two families and the mingling of their lives desires. They will get to explore to limits of stress one can put on a relationship and relish the moments of pure joy that can be found in daily mundane tasks. They will grow old together as long as they continue to make the others desires their first priority.

 Will they make it? I think so...what proof have I you ask? When confronted with the opportunity to register for gifts, to increase their personal collection of possessions, or take cards full of cash home they said no. Instead at their wedding, on their day they have decided to raise money to help find a cure for my illness (Erdheim-Chester Disease).

What God wouldn't bless a union founded in such Charity?

If you would like to make a donation to help find a cure for Erdheim-Chester Disease you can do so at the following link. http://www.razoo.com/story/Ecd-Global-Alliance

Neural Distress

Can't sleep, feeling a little down about my disease today. I know I have a good doctor and I know that I am lucky to have caught this disease process so early, but I keep getting this nagging feeling that the other shoe hasn't dropped yet and that no one really understands what I have, if I have it, or how to treat it.

Brad Crump

I used to be so confident in Dr.'s and I wish I could return to that time when they were omnipotent. Unfortunately, I now realize their just guessing half the time while talking a really good game.

I have a PET Scan coming up on the 9/5/13 and that will serve as a baseline for my ECD from which we will be able to monitor remission or expansion whatever the case may be. It will also show if the disease has spread beyond my pelvis and abdomen. I'm scared they'll find more growth and concerned that i will have to wait three more month's from that date to assess the effectiveness of the Kineret treatment I am on.

On a separate note my wife went back home a few days ago to help get ready for school and to chauffeur my oldest daughter around to soccer and her TACHS class and I am a little crazy without her around. She is my rock.

I hope this feeling passes soon I don't like the way my brain is working right now.

Life Is Fleeting

Somethings in life seem grand and imposing. For instance when Washington became the 42nd State to join the union in 1889 I am sure it felt like quite a moment. In fact the new Capitol that was constructed uses the number 42 many times in its construction to remind visitors of the importance of this number. Below you'll see my family climbing the 42 steps to the entrance of the Capitol building.

Washington State Capitol

Soon after becoming the 42nd State there was a new flag created with 42 stars. I am sure that many Washingtonians had ever intention of getting their hands on one of these new flags when just a few months later Idaho became the 43 state admitted to the union and the 42 star flag stopped being created. Washington State in fact only has six of these flags in its collection because they hadn't made their first large purchase before the 42 star flag was discontinued.

42 Star Flag in Capitol Reception Room

Fact is we never know how long anything in life is gonna last so make the most of every day because there is nothing worse then wishing you had done something when you can no longer do it.

Whimsy

Whimsy is something that far to many adults don't let into their lives, but kids they engage in whimsy all the time. When was the last time you gave yourself the time or latitude to be extravagant, playful, or engage in a fantastic notion. Sounds fun doesn't it!

Look at our children, they can take a empty box and turn it into a rocket ship or a castle. With just a crayon and their imagination they are transported from the living room to the inside of a interstellar spaceship or a knights castle. They can do this because they are willing to engage in whimsy with no fear of how they will be seen by others.

When was the last time you skipped instead of walking, ditched a meeting to go to the beach, or rode on a mermaid horse.

Point Defiance Zoo and Aquarium - Tacoma, WA.

  Whimsy doesn't die in us unless we let it. Don't let it ...

Serenity Under Fire

I don't think there is anything more serene then sitting next to a roaring campfire on a calm and quiet summer day. Life really is about the simple things don't you think, at least it should be. That's the problem isn't it! We spend so much time focused on the things in life that draw the most attention and these things don't tend to be the things that bring us joy.

My summer and yours is drawing to an end. Soon all us teachers will return to work, church will pick up where it left off in June, and our kids lives will become much more structured. As parents our focus will shift from doing the things we enjoy to doing the things we must as part of our lives in a family. I know that this can be stressful so I have saved a seat for you here at my campfire. If you need to stop in for a visit feel free, there is always room for one more.

If you can't make it over to my place you can find this peace in the busy hubbub of your daily life if you remind yourself of the following three things on a regular basis.

1.) I don't need to do it all.
2.) What other people think is not important.
3.) I can never be perfect no matter how hard I try.

Give yourself a break this year from the expectations of others and life will give you a break from the unrealistic expectations you place on yourself. 

Feeling Prickly Today

I have been having some rare encounters with animals the last few weeks. I am starting to think there is some sort of unspoken connection. It feels almost like they know I am trapped in my body the same way they are trapped in their cages (this is of course not true in any way but ...).

Porcupine at Northwest Trek

This porcupine crawled up onto his log and stared at us when we came by his exhibit. His mobility was excellent which immediatley made me think about how lucky he was.

My leg keeps popping out on me when I walk, like someone is bumping the back of my knee when I am standing still. So far I am able to catch myself and I don't think anyone even notices the glitch but I am worried that there will come a time when this "glitch" will result in me falling.

Worrying...gotta stop doing that.

Simplicity

Washington State Seal

Washington State became the 42nd State in our nation on November 11th, 1889. When this happened they put out a contest to have a new state seal created. Many artisans spent many months creating new and unique ideas for the state seal. One local craftsman on the last day of the contest took his inkwell and drew a circle, then took a silver dollar and drew another circle inside that. Between the two lines he wrote "The Seal of The State of Washington 1889" and then he took a two cent stamp and stuck it in the middle circle and submitted his product to be judged, he won.

Sometimes keeping it simple is the best bet. I am finding that with my limited energy and mobility sometimes I need to just accept the simple and stop trying to do it all.

Sounds easy but after a lifetime of pushing the limits of my physical and emotional self it's a hard change to make.

Food Meltdown - When Food Runs Your Life!

When I got out to Washington State to visit the family I figured I would make a quick run to the local grocery store to load up on the foods I can eat. I have sort of settled into a routine of things that do not bother me and I was looking forward to sticking to those food options. So I went to Safeway and right away I couldn't find any salad dressings that were low enough in fat and didn't have added sugar (fake or otherwise). Then I realized they didn't have a organic section which meant no Vitatops (for fiber), no Quorn (meat substitute), and I couldn't find the Bread I have been eating with no extra sugar or additives. I panicked.

I know it sounds crazy but sometimes really simple things cause me to have horrible stomach pains and I started to panic. For example today we were out at a local farmers market during lunch so I ordered a Taco salad from a local stand (no cheese, no sour cream, no dressing) and either the rice or the way the chicken was prepared didn't work out well for me (translate that as debilitating stomach pain). 

So finding the right foods while I am shopping is essential. I insisted we go to another store and still couldn't find what I needed but was to tired to keep looking anymore, went home and took a nap.

Later that evening, still a little panicked about food for the next day I went to a local chain called Fred Meyer's and was able to pick up chia seeds, organic oats, natural unsweetened jam, eggplant, squash, and my Vitatops. Life returned to a state of balance. I could live on Morning Oats if I had to.

When simple things like eating become complicated they can really run your life. I am just now starting to understand the fears and frustrations of the Diabetics and Celiac Disease suferers I know.

Sorry guys for not getting it before.

Kineret Injections

I have been given a new drug to take called Kineret. It was originally created to treat severe arthritis for patients that are non responsive to oral drug options. It is an injectable, yes that's right I said injectable. They might as well call it a shot because essentially your giving yourself a shot every day.

I have been using it for three days now and I have a little system going.
1.) Remove from refrigerator and wait an hour.
2.) Clean my side with a alcohol swab.
3.) Mark injection site with marker (I know this isn't necessary but I'm watching for irregular reactions and this is the best I could come up with).
4.) Jab myself with needle (make sure I am not in a blood vessel) and push plunger.

When I was first told I would be doing these shots I figured there would be a little bit of assistance available from my family but it turns out they are all to squeamish to be of any help. I wasn't really worried about it because I though the needle would be smaller and the amount of medicine would be a little less then it is.

Fact is it hurts...  the Dr. at John Hopkin's says this thing could destroy the ECD I have in my abdomen and pelvis. Unfortunately there are no studies indicating what happens with the ECD if some day I stop taking it. The largest study I have read on Kineret being used to treat ECD had only two participants in the trial.

Good news is I have insurance! Kineret costs $3,248 a month x 12 months = $38,976 a year. I will never take that flimsy prescription drug card for granted again.

Recyled Water

Olympia has recently finished constructing their new Hands on Children's Museum and it is amazing. As far as children's museums go it definitely ranks in the top 10 I have been to.

Olympia Hands on Children's Museum

That's cool but what's really crazy is the play space they have created out of "reclaimed" water from the sewage treatment plant across the street!

"The plaza – a joint effort of the East Bay partners the City of Olympia, Port of Olympia, Hands On Children’s Museum, and the LOTT Clean Water Alliance – highlights the partners’ shared educational focus on the importance of water.

The most striking feature of the plaza is the stream-like water feature, which is truly unique.  It is the first and only recreational water feature in the state that uses reclaimed water.  LOTT produces high-quality Class A reclaimed water from the water we use and discard every day.  It is the highest quality of reclaimed water, meeting stringent water quality standards and permit requirements from the state Departments of Ecology and Health."

So essentially all these kids are playing in cleaned sewage water.

Learn more here... Recycled Water

Going Home Never Felt So Sweet

Sitting in the airport waiting for my flight to SEATAC feels different this time. I have been home pretty much every summer for a few weeks since I first left Olympia, WA and have always enjoyed the trip, but this time I need it!

Things have been completely out of control since April. From changing the foods I eat, to how and when I sleep, to the pain faced over simple things (like walking), it has all been manageable individually but completely overwhelming as a whole.

Home though, home is calling me. What’s weird though is that nothing about home is different. I will sleep in the same room I always have and probably visit all the same local spots I always do. Nothing at home is different, I’m different this time.

I will not let this trip pass without looking up friends I haven’t seen in almost 20 years*, without trying Olympia Oysters, without taking my son fishing.  I will not hold anything back for the next trip, because the fact is there are no guarantees there will be a next trip.

What have you been waiting to do? Do IT!

* P.S. We are having a birthday party for Keegan on 8/18 at 2pm in Olympia, WA. If your in the area please come by and lets reconnect.

Escaping - Jerry's Map

I have always wanted a hobby. One of those all encompassing, sucks you in and blocks out the rest of the world type of hobbies. There have definitley been times in my life where the distraction would have been nice to have. There is just one problem...or two perhaps.

Jerry's Map

First, I lack artistic talent on all levels. I am even partially color blind which I'm sure doesn't help my feeble attempts at making ordinary things look beautiful through the artistic process. Second, I just don't have the patience it requires to focus in the minutia. That is why I find the idea of Jerry's map so interesting.

This man has been creating, destroying, and re imagining a imaginary world of his own making since 1963. What I find even more bizarre is that his map is formed from thousands of sheets of paper that he has never seen put together. Can you imagine spending a life time working on something and never getting to see the end result? This doesn't seem to bother Jerry though, for him its all about the journey.

I feel like my life is the project and I will never get to see the end result, but then none of us really get to see the final result of our lives do we. Hope I can just enjoy the journey.

Check out Jerry's Map here.

John Hopkins Road Trip - Surreal

I am heading down to Baltimore tomorrow after church. Monday morning I have an appointment with Dr. Paul Scheel Jr. to discuss my treatment options for my disease. Erdheim Chester Disease is a real mess but I feel well informed  (as well informed as one can be about a disease that only a few hundred people in the world have).

I was directed the the Erdheim Chester Disease Global Alliance web page by the Dr. and my wife. It has been a big help! They do a weekly blog where a bunch of people with the disease or caregivers for people with the disease chat about all types of things. They have been very friendly but the funny thing is every week I'm reading about people who had the disease and are no longer with us.

So tomorrow I take this journey...

Floral Park, NY - Baltimore, MD

It's only 205 miles, but this trip is going to change my life. I can feel it and I must admit I am approaching it with a sense of dread. On Monday I will have a treatment plan and this whole rare disease thing will become very real, until now it has sort of been surreal.

I guess its time for the dream to end and reality to begin.

Lions, Tigers, and Red Panda! Oh My!

There is something about going to the zoo that makes me happy. I try to get there a few times a year with the kids and yes I have to admit I even sneak off to the zoo by myself once in a while. The zoo is like a time warp that sucks me back to my childhood.

When I was a kid my parents would take me to the Point Defiance Zoo and Aquarium in Tacoma, WA. This zoo has the most energetic and cooperative zoo animals I have ever met. The Polar Bears are always swimming in the water, the elephants are always active, and the cats are constantly prowling. When you include regular trips as a kid to to Northwest Trek (a wildlife park) and Wolf Haven (a wolf sanctuary) my family has raised the bar for my expectations of what my involvement with the animals should be when I attend the zoo.

Now I live n NY and needless to say NY has some "great" zoo facilities. The Bronx, Queens, Brooklyn, Manhattan, and Staten Island all offer great locations to view animals in the heart of a metropolitan community. They offer great locations, but they also have the laziest animals. I swear I have been to the Bronx Zoo 15 times in the last 6 years and never seen the Polar Bear move! For the longest time I swore he was stuffed and they changed his sleeping location every night when the park closed (then he twitched one day while I was there).

So as you can tell I like the zoo. I went with my family recently to the Central Park Zoo and saw an animal that has always done a good job of hiding from me, the Red Panda.

Red Panda at Central Park Zoo

It's cute, and it is the first time I have spotted it in its enclosure in four years. Now in the past I would have been excited and then moved on to the next animal. This time though I saw it and thought, "might never see you again little buddy...not sure I got 4 more years in me". I clearly have not yet come to terms with my illness, Erdheim Chester Disease is just so unpredictable there's no way to prepare for it.

At least I got to see the Red Panda, cute right!

The Coffin Maker

I know it may seem a little morbid to discuss death here but I'm going to anyway. I find that having a rare disease with no known "cure" has made me more honest with myself, particularly when it comes to the subject of death. 

In the past I would have said something like, "God can take me whenever He is ready I'm not afraid to die" and that was true. I am not afraid of what lies after death ( because i know i am saved ) but I am desperately afraid of not seeing my children grow up, of leaving my wife to do it on her own, dying before my parents and forcing them to experience the death of a child. 

For these reasons I will cry, mostly when no one else is watching. Not because of vanity but because I feel like I need to work hard to give them as many good days as I can. 

So needless to say I think about death. I think about where I should be buried, what type of service I would like, and what that day will be like. 

Recently my colleague Mina posted this video  https://vimeo.com/65019294 about a man who hand carves coffins. I found the video really touching, which is undoubtedly because of my current perspective. Some people probably see his work as morbid but I think it would be nice to be put to rest in a work of love. 

Check out the video and share your thoughts. 

The Devil is In the Details

In my life research has always been a good thing. For instance we just went of a Cruise and I sepnt hours researching blogs and websites that gave us some great tips. In researching the cruise prior to departure we were prepared (and then some) for a fun time at pirate night, for a quick and painless check in process, and we were well prepared for the 3 hours we were on the boat before we could get into our room.

I have used this same method of research to ensure some awesome trips to Nashville, Montreal, Quebec, Saratoga, Notre Dame, St. Louis, US 101 etc. Almost always we hit a few home runs because of the research we have done online prior to going on vacation (or going into battle with a new unknown destination). This does not work in medicine!!!!

Reading medical abstracts and researching drug interactions is not the same as finding the coolest place to take your kids in St.Louis (its City Museum by the way).

City Museum - Saint Louis (what happens when hippies build a children's museum)

I say this because I spent last night sick and awake because of some breathing difficulties and I decided to do some research. I am now sick and depressed, but I guess its to be expected when my best case prognosis is a sixty percent survival rate after forty months.

I have been lying to myself that because I am young and relatively healthy as compared to the other people I have been hearing abut who have this disease that somehow I will be immune to or have a better chance at avoiding its devastating consequences for my body. This is probably just wishful thinking.

Oh well...here is to thinking wishfully.

MRI Tips and NYU Post Sandy

I had another MRI today to track the progress or lack thereof of my retroperitoneal fibrosis (lets keep our fingers crossed on that one). Retroperitoneal fibrosis is a mass a fibroid tissue that grows because of inflammation of unknown origin and though not intending to ends up crushing all the things it grows around. For most RPF patients this causes lots of pain and can often lead to kidney failure and death. For me it has caused problems with my eating due to pancreas, spleen, and stomach involvement.

That being said I had to go into Manhattan today for the MRI. Unfortunatley, NYU is a hot mess! Hurricane Sandy devestated this medical center in so many ways it would be hard to describe them all. The worst damage I have seen was done to their Emergency room and all offices held in the basements of their many buildings. If you came for a MRI prior to hurricane sandy you would have seen this.

660 1st Ave. NYU MRI Location - Basement

The same location today looked like this.

660 1st Ave. NYU MRI Location - Street side (in trailer)

The flooding destroyed all the machines in the basement so they had this temporary structure built until the repairs are completed. In fact I had to duck around some guys working on the lights to get to the changing room and then was told not to remove my shoes because of all the construction debris on the floor, it wasn't that bad though.  I survived the MRI which as far as I'm concerned is not truamatic or difficult in any way, its just boring. Seriously, how people stay awake inside that tube is beyond me.

Here are my tips for your next MRI:

1.) Tell them to turn off the radio. The music is horrible and way to loud anyway.

2.) Bring earplugs. The dull thwacking noise of the machine can always be muffled a little more.

3.) Have the person turn down the volume on the Headphones or your eardrums will explode when they do finally speak to you.

4.) Practice holding your breath before you go. The better you are at staying still the quicker you get done.

One Last Thing:

Funny story before I go. There was this really big mean looking guy with a goatee in the waiting area. He had a scowl on his face the whole time we waited and I overheard at least five separate calls where he was very rude to his family and his employees (guy made sure everyone in the room knew he was the owner of a Popeye's Chicken). This guy even had the nurse cowed, which if you know any nurses that's pretty hard to do.

So he goes in the same time as me and I can hear them giving him directions on how to use the emergency buzzer (which rings a buzzer for the radiologist to hear). Next they put him in the MRI machine and then start to close the door, then you hear it buzzzzzzzzzzzzzzzzzzzzzzzzzzz. He didn't even stop buzzing when they finally backed him out of the MRI.

I didn't laugh because...well it just wouldn't have been right. But it reminds me that people aren't always as mean or as tough as we think. In fact their probably not as tough or as mean as they think. Either way try to cut people some slack because you never know what they are going through.

The Waiting Is The Worst Part

It took five month to get to today. That's really not that long when you think about it. It takes 18 years to get to adulthood, it took me 30 years to meet then marry my lovely wife DawnMarie, and it will take me a lifetime to understand my place in this crazy world in which we live. But lets get back to today...this is the day I found out I have a rare histiocyte disorder called Erdheim-Chester Disease (I told my friends and family on the 8/12).

The funny thing is that after waiting for five months to receive a diagnosis I am numb to it all. When I first went to the ER for pain in my back and sides I waited all night to get the results of a CT Scan which showed "anomalies" and I was incensed at the wait. Then I waited days to have someone explain those anomalies and I started to get worried. Then I waited for the results from a MRI, Endoscopic Ultrasound, Robot Assisted Surgery, Bone Density Scan, and Nuclear Medicine Bone Scan.

Every new test takes a few weeks to get scheduled and then a few more weeks to get the results of. So here I am after a series of just a few weeks repeated again and again with my rare disease diagnosis. I am upset, no one wants any disease let alone a rare one after all. However, I think all the waiting has helped me prepare for this diagnosis and lets face it I'm lucky, it takes some people years to figure out what they have wrong with them.

At least there is a plan for this illness, I am going to start taking a drug called Kineret® by daily subcutaneous injection starting tomorrow. This drug targets the over production of histiocytes in my body which are causing the ECD masses.

Moving forward I will get a PET Scan to map where the ECD has established in my body. Then we will monitor the success of the drug in destroying the ECD. Hopefully...unless something changes.

Two things I have learned so far in this journey. First, I have an amazing group of friends, coworkers, parishioners, and a incredible God. Second, life can't be planned for sometimes it just happens.

What are you waiting to hear about in your life? Tell me about it!