ECD Family Gathering

We leave tonight for the Erdheim-Chester Disease Global Alliance Patient and Family Gathering in San Diego (On the West Coast of the United States). This is the only organization actively supporting those suffering from ECD and also one of the only groups supporting research towards finding a cure/treatment for those suffering from ECD.

In the terms of those suffering from ECD I am a baby. I have only been officially diagnosed for 3 months now, but on this trip I will meet people who have been fighting for much longer. I will also be meeting people who have lost their loved ones to ECD. I feel like this is going to be a lot to take in.

What I would like to gain from this trip is a better understanding of the disease, to more accurately understand its probable progression, and to gain more knowledge about potential courses of treatment.  This may or may not happen.

More importantly though I would like to meet other people with ECD. Right now I feel like I am the only one. No one I talk to about ECD really understands my limitations, pain, or frustration. I say Bone thickening and people smile and nod. I say I can’t eat most foods and they give me the pity face. I go from anger to depression for no reason and they suggest counselors. I say histiocytic cell infiltration and they glaze over.

I want answers, but what I could really use now is a few people in my life who understand.

Getting Ready

Getting ready for my medical conference in San Diego. Packing cloths, snacks, and medicine (what a difference a few years make in trip preparation routines). It occurred to me today that I should make sure I take all my medical cards, all the medications I am taking, and a list of all my doctors with me. Honestly I am just a little worried that something is going to happen on the trip and I wont have access to my regular team of doctors (this fear is probably compounded by the fact that I seem to be coming down with a cold of some sort). 

Good thing is that DawnMarie is coming with me. She always does a good job of keeping me on track and calm.Plus the warm weather and sun will be a nice change. Please pray that the trip goes well and I come back recharged and well informed.

ECD/Pancreatitis and Weight Loss

As you are aware I have been having some problems with weight loss. I have worked very hard this month to increase my caloric intake as a way to reduce my weight loss (eating more often, new foods, more calories, higher levels of fat per serving, etc.). The direct result of this is two fold. First, I have had a significant increase in my pancreatic pain. Second, I have reduced the speed at which I am loosing weight. With just a day left in the month it looks like my weight loss this month will be just under 7 pounds.

More importantly I have not had to buy new pants in at least 4 weeks.

I was doing some research tonight and it is clear to me that I need to discuss the Pancreatic part of my diagnosis with the doctor more. Apparently there are some basic things I can be doing to reduce pancreatic pain like not drinking coffee and keeping my fat intake real low. None of these things alone though are going to "fix" this problem.

One thing I have learned through all this is that there may not be a fix...but that doesn't mean we can't try to make things better.

Funny thing is when all this started I was happy about the easy weight loss, we can all afford to loose a few pounds right! But here I am not that far from the start of it all and I really wish it would just stop. Goes to show that all good things have their limits.

Weakness Is the Way

I received a lovely book from one of the Missionaries that our church supports. [For those of you who don't know I am not just a math teacher I am also a Pastor in the Presbyterian Church (USA) and I work for an amazing congregation in Queens Village, NY. Our church is called First United Presbyterian Church. Find out more here.] The book is titled, "Weakness Is the Way". This book is really resonating with me this week.

The chapter I am reading right now speaks about how all the people God used (to protect His people, to lead His people, to teach His people) were fundamentally not up to the task, they were to weak. They simply were not capable of doing what was asked on their own. The best example is Moses who was asked to go speak to the Pharaoh, even though he was wanted for murder and deathly afraid of public speaking. He was to weak to accomplish the task on his own.

Ironically we talk about weakness all the time now a days. We speak of physical weakness as a fault, we chastise our leaders and our "friends" intellectual weakness, we gossip about others personal weakness of character, and oh do some love to revel in how others are weak when it comes to food.

All this reminds me of a Peanuts cartoon from when I was a boy. Lucy asks a sad looking Charlie Brown what he is worried about. Charlie Brown says, "I feel inferior." "Oh," says Lucy, "you shouldn't worry about that. Lots of people have that feeling." "What, that they're inferior?" asks Charlie Brown. "No," Lucy replies, "that you're inferior".

Very like Lucy right, to kick someone when they are down.

It takes great strength to support someone when they are weak and no strength to tear someone down when they are already made weak by life. We all have our moments of weakness (weakness we will survive with God), but how we handle others weakness is what really defines who we are.

ECD Conference Preperations

Heading out to the Erdheim-Chester Disease Global Alliance Conference in San Diego at the end of the week and it is stressing me out a little bit. I feel like I have a thousand things to do between now and Thursday night when I get on the plane. What makes it worse is that once the week starts there is not a moment to rest or accomplish any of the small tasks I would like to get done prior to leaving.

I need to meet with the new church organist, we released our old one last week.  Remind me to talk to you about how all that unfolded sometime ten years from now when all the interested parties have stopped paying attention because it is a cautionary tale in the importance of security and the dangers of burning bridges when being fired.
 
I also need a new belt (although I just drilled a new hole in my old one so that might do the trick) and a sports coat for the trip to San Diego. Both of these things arise from my new super hero ability, they call me the incredible shrinking man (calm down folks...you have to have a sense of humor about these things).

I need to call the Psychologist and set up an appointment, but honestly I haven't done this because I just don't know when I would be able to meet with her?!?! Some have implied that I am afraid to go, but honestly that's not the issue. Anyone who knows me knows I like talking and I don't mind telling my story (as this blog indicates), so a counselor won't be a bad thing. I feel like I am already heaping so many things on my wife and in-laws and asking them to pick up more of my responsibilities so i can indulge myself with a counselor (first world problem) seems selfish. 

Then there is the requisite packing (which is complicated slightly by the need to bring refrigerated medication), planning of a lesson for my substitute teacher, and installation of our new dishwasher and stove (which got messed up on Saturday and has now had to be rescheduled). 

Actually, that's less things then I though. You know what...I am going to email that counselor right now. Just so I can cross it off of my list. 

Schedule Needed

I have been struggling to solidify new procedures and systems to ensure that I don't "miss" things. Some of the things I have been forgetting include my lunch, my shot, the day, assigned honey do items.

One thing I've done to address this issue is build a morning schedule that ensures I get a full breakfast and still have time for my shot, cleaning, and getting ready for work. I stopped printing out that list a week or so ago and I found myself very behind schedule the last few mornings with not enough time to accomplish everything I needed to. So back to the list!

Another area I have been working on is keeping a food log that tracks my response to what I am eating. I have been doing it for a few days now, being sure to include when I have back pain, bone pain, or an upset stomach. I am convinced that at some point someone is going to care about these things and when that day comes I will be well prepared to answer all their questions.

Present to my Wife

My wife's birthday is today and she asked me to record myself reading one of those Hallmark books. Its called Wherever You Are, by Nancy Tillman. I put it off until yesterday then pulled the book out so I could record myself into the book (the idea is someone can have you read the book to them even when your not present). So it turns out the book is written to let people know you love them even when your not around, because your dead!

I have included the text below, because it is impossible to read without crying. Seriously it took me like 20 minutes of reading and re-reading to record a cry free version. Good luck!

I wanted you more
than you ever will know
so I sent love to follow
wherever you go.

It’s high as you wish it. It’s quick as an elf.
You’ll never outgrow it…it stretches itself!
 
So climb any mountain…
climb up to the sky!
My love will find you.
My love can fly!

Make a big splash! Go out on a limb!
My love will find you. My love can swim!

It never gets lost, never fades, never ends…
if you’re working…
or playing…
or sitting with friends.

You can dance ’til you’re dizzy…
paint ’til you’re blue…
There’s no place, not one,
that my love can’t find you.

And if someday you’re lonely,
or someday you’re sad,
or you strike out at baseball,
or think you’ve been bad…
just lift up your face, feel the wind in your hair.

That’s me, my sweet baby, my love is right there.
In the green of the grass…in the smell of the sea…
in the clouds floating by…at the top of a tree…
in the sound crickets make at the end of the day…

“You are loved. You are loved. You are loved,” they all say.

My love is so high, and so wide and
so deep, it’s always right there, even
when you’re asleep.

So hold your head high
and don’t be afraid
to march to the front
of your own parade.

If you’re still my small babe
or you’re all the way grown,
my promise to you
is you’re never alone.

You are my angel, my darling,
my star…and my love will find you,
wherever you are.

You are Loved.


DawnMarie, Alyssa, Isabella, Bradley, and Keegan. No matter what the future may bring I will be there with you through everything. If someday i should die from this horrible thing, don't you worry because its in heaven you'll find me, waiting. You are loved.

Akward

Over the last few days I have ended up at both Wendy's and Friendly's (for those of you from other countries these are typical burger shops). Needles to say there is very little food on their menu that I am willing to eat.  I have gotten used to this so I plan ahead and eat prior to taking the kids or I bring something with me that I can snack on.

Great Kids!

What's funny though is that it really throws off the staff. At Friendly's last night I ordered coffee with fat free milk while the kids ate. I told the waitress I wouldn't be having anything else, yet the waitress asked me four more times if I was sure I didn't want anything.

In hindsight I should have said, "its a health thing". The truth is I just didn't want to get into it. I have grown tired of explaining what I have and what its effects are, particularly because I really don't have any answers. This is my new normal.

We are everywhere!

People with rare disease that is. I met another person with a rare disease this weekend at my daughters soccer game (mine is way rarer...yes it is a contest). Funny thing is that she was also super focused on the food she is eating even though she doesn't have "stomach" problems per se.  It was a good talk because I realized that in a lot of ways my refusal to eat certain foods is more about a shift in what I am willing to put into my body then anything else.

There is something about realizing how close to death we really are that causes people living with rare diseases to want to live a healthier life. It can turn some of us into health nuts. Some of this is surely the desire to control something in our lives, but another part of it has to be the realization that this body is a gift and if we don't treat it well it wont be around for very long (if its not around either are we). 

Grocery Store Blues

Stomach has been hurting me a little the last few days. I have decided it hurts because I am eating to much fruit (this may or may not be true, but it is what I have decided so that's that). I say this to explain my mood when I went grocery shopping Friday evening. After loading my cart with vegetables of multiple varieties I wandered into the the processed food aisles.

I have gotten to the point where I don't even think of the processed and canned food aisles as existing. They certainly don't exist for me! I literally get 95% of my groceries from the outside edges of the store. I digress....

As I was wandering through the vast quantities of processed and salt preserved foods, most of which I cannot eat, I though to myself I wish there was a section for me. An Aisle where everything was low fat and ready to eat. A store that treated food like it was meant to sustain our bodies not just entertain our fat loving salt addicted taste buds. A place where people who were sick could go to shop and not leave hating food and feeling so limited.

For all those struggling with limitations to your diet I understand! There has to be a better way! But what?

Kitty Cat

Saw this when I came into my room today. It is a cat from an American Girl doll set I believe . That fact that I found a toy where it didn't belong is not surprising really, I do have four children after all. What caused me to stop and ponder the placement of this cat for a moment is the small silver pan from my daughters cooking set placed strategically in front of the cat.

 

Clearly my youngest daughter felt that the cat would need water when she left it in my room.  I just called her in the room and asked her what it was for and she says, "oh the kitty, i thought you would like it"(Just in case you ever read this Keegan, yes i did like it. It made me smile when I was feeling sad. You make me smile when I am feeling sad.).

The small things...they matter.  

Fast Week

Its already Thursday!!! This week has just been flying along.

This is one of those weeks where I have got a lot done but it doesn't feel like I have accomplished anything. It used to be that this would really stress me out but at this point I am okay with it. Fact is I have lots of things to get done today that aren't going to get done.

What will happen though are the most important things. I am going to spend time with my kids - the church bulletin can wait. I am going to take my daughter to soccer - grades can be input later. I am going to put my feet up and rest - while phone calls and emails will have to wait for another day.

Truth is most of the things we stress ourselves out about just aren't that important.

Variables to Pain - With No answers in sight.

One of the things I find most frustrating about this process is all the variables that are not being controlled for. For the last two days my back and sides have been hurting, the worse that it has been since prior to my exploratory surgery. Prior to the surgery this pain was seen as an indicator of internal issues with my Pancreas, but could have also been related to Erdheim-Chester Disease growth (the stretching, squeezing, and crushing of internal veins, tissues, and organs by the disease).

Since then I have tried to control for this pain by eating an incredibly low fat diet with minimal processed foods. The idea being that the less fat and processed foods I eat the easier it will be for my pancreas to work (my pancreas is compromised by the ECD). This plan has led to significant weight loss, which was okay when my weight was near 254 lbs. but has now become an issue because my weight is down to 160 lbs. I have become very concerned that my weight is going to drop below my acceptable BMI level of 154-176 lbs.

To address this issue I have tried to increase my caloric intake which has resulted in to much time spent eating and a little more fat in my diet. I have added shakes, protein drinks, ensure, and a bunch of other items. At the same time I am trying to eat out at least once a week (normally a feta salad with chicken and yes I know feta is very fatty). Meanwhile I have also been weaning off of my Prednisone (an anti inflammatory medication) and I am still taking Kineret. Additionally, school and soccer are back in full swing which has meant more standing and walking.

So here is the question. Why am I experiencing more pain? Is it the fat, the prednisone wean, the kineret buildup, the standing/walking, the ECD, or something as yet undiagnosed? Answer, I DONT KNOW!!!

Frustrated. Going to get myself a nutritionist and a psychologist. At least then someone will be able to explain why I am loosing weight while I go crazy.

Teeth...Mystical signposts for the SOUL!?!?!

Teeth are very versatile things aren't they! They serve multiple functions from helping us eat to indicating our mood. Today one of my co-workers was walking up to work and I could tell she was lost in a sad thought, so I said hi and gave her a full teeth smile. She snapped out of it and then we had a great conversation about how our faces give away our inner thoughts so easily.

I have two thoughts on this issue:

First, smiling is such and easy thing to do and it seems to change the environment we are in even if the smile is fake! If people are "happy" and cheerful it tends to guide the mood of the room in that same direction. Have you ever noticed that if someone is telling a joke and you don't get it you will still feel like laughing when everyone else is laughing? How about when people are gripping and complaining, ever noticed how easy it is to join right in? Makes me wonder how many of our bad days would be turned around if everyone else was just positive.

Second, sometimes the pain and the depression make smiling (for real anyway) impossible. When that happens I can put on a fake face but no amount of environmental happiness can change the very real life issues I am struggling with. I have noticed though that no matter how crazy I get if my wife keeps calm and stays positive it helps, no matter how depressed I get if Gracie (the dog...don't want to start any rumors) still wants to cuddle with me it helps, and no matter how sad I am when my kids hug me I can't help but smile.

Fact is that teeth (when part of a smile) aren't magic healers or mystical signposts for the soul, but they are very real indicators that other people care. So show some people you care tomorrow, SMILE!

Family Time

Spent the day with family, shopping, and eating lunch at the diner. My youngest daughter ended up getting her ears pierced! It was a great day, my legs hurt from all the walking but I wouldn't have missed it for the world. Life is incredibly short even under the best of circumstances so I'm going to make sure I wring the most out of it that I can.

Positive: Was there to see Keegan get her ears pierced without so much as a tear. In fact I would describe her mood as proud. Slowing down and enjoying life ensures we don't miss those special moments.

Negative: Almost fell getting out of the booth at the diner, legs just didn't seem to want to work when I went to stand.  Slowing down doesn't just help you enjoy life it also prevents you from landing on your face.

Pity Face

Got my first Pity Face today. Didn't like it.

The good thing about my disease process so far is that if you didn't know I was sick you wouldn't find out by just looking at me.This weekend though I went to the Medical Lab to get my blood drawn for a series of tests and the lab tech looked at me like I was sick.

I'm not sure if it was the wool cap I was wearing, the long list of tests I was having done, or perhaps my weight that elicited "the look". Funny thing is that I don't feel sick. I feel old and I feel crazy sometimes but I rarely feel sick.

In fact I had a great day today. Lets hope things are on the mend and there are many more great days in my future.

P.S. Sick people don't like you treating them different.

Revenge of the Roti

Today I attended a baby shower for a young couple from the church. I have found that one of the most difficult things for me is saying no to food when i am at social gatherings. Part of this is because I have always been an eater so my first reaction is to say yes to food and the other part has to do with my desire not to offend the host. It just seems rude to attend someones home and not take some sort of food from them. This is something I know for sure I was taught as a child when visiting my Grandmother, whose cooking at one point became nearly inedible.

Today I almost beat back both those reactions when offered food! I sat on the couch for a while before allowing my guilt to drive me to the food line. Once their I ate this wonderful potato and chick-pea curry with some of the best roti I have ever had. It is a truly vegetarian dish which is normally a good choice for me but I haven't really been eating potatoes or roti so it was a gamble. In fact any food not prepared by me is a gamble because I don't know how much fat (oil, butter, etc.) was used in its preparation.

Sure enough potato and chick-pea curry fought back causing stomach pain and cramping. Oh well...lesson learned. I do wonder sometimes though why I have to make the same mistakes over and over again.

Be Careful What You Wish For

I'm sure you have all heard the old saying, "be careful what you wish for," right? Its not as funny as, why don't you take a long walk off of a short peer" or as prosaic as "that's as useless as tits on a boar hog" but it is more true then i could have ever imagined. One funny thing about life is the longer you live the more things start to make sense.

I have spent a large portion of my life wishing I weighed less and now I am fighting to stop myself from loosing weight, ironic. Funny thing is a year ago I would have scoffed at the whole concept of someone being upset they were loosing weight, oh how quickly things change. In the past few weeks I have welcomed a blender into my life, started drinking ensure, and begun trying to eat new higher calorie foods. This all to stop my weight loss!?!? This has brought some limited success (ice cream sundae), along with some stark reminders as to why I don't eat certain foods (no rice or beans).

Unfortunately as I cut back on the Prednisone the more calories my body will consume., thus forcing me to try and eat more! To think I used to wish for this (total weight loss 94 lbs)!

Lesson: Be happy with who you are and how you look because life is to short to waste time wishing you were different in some minor way.

Life Goes On

My wife and I bought a beautiful 1913 American Foursquare last December and immediately got to work. My father came out and led the remodel of our bathroom while DawnMarie and I stripped wallpaper and painted. We had the hand laid parquet floors refinished while upgrading the electrical system.

Meanwhile we met with a Architect to plan a small addition that will add a family room, bathroom and mudroom on the first floor, and two bedrooms on the second floor. Then I got sick...things were still moving along with the Architect and the Village but our focus was elsewhere. Yesterday we had our first meeting with the Village to seek a few variances needed to build the addition.

It took us 6 months to get put on the meeting docket...and it got cancelled!

Now in the past I would have been crazy upset or spent days ranting about the injustice, but this time i felt nothing. The fact is that this remodel really isn't that important. Do I want it? Yes. Is it going to make a significant improvement to my home? Yes. Will I waste even one moment of my life worrying about or it? No.

So until the next meeting on 11/13 life goes on!

7 Billion Unique Souls

With more then 7 billion people alive in the world today it is easy to sit back and say..... "I am one of many, let others deal with the problems of the world". So we bury ourselves in the trappings of our lives, spending all our time worrying about what we want and what we have and rarely thinking of others. Then something happens to you and you realize that your not just one in 7 billion...you are unique.

And if you are unique then you must also be destined to effect the world in a way absolutely designed to use your special traits and skills. Perhaps you were born to feed the hungry, educate the poor, or adopt a child who does not know love.

I am called to serve the church and teach anyone who will listen. What are you called to do? I can't imagine how depressed I would be if I had found out I had ECD and I hadn't already embraced my calling. The fact is none of us know how long we have left in this life so don't waste a moment saying tomorrow..tomorrow.. because their is no guarantee that tomorrow will come.

zenpencils.com

Appearances

If someone you didn't know came and spent time with you what would they tell others was important to you? How would they know what was important to you? Think about it.

We say family is important but we spend most of our time at work away from our families. We tell people serenity is important but then we run around all day trying to accomplish twenty-six hours worth of things in a twenty-four hour day. We say faith is important but we spend less then two hours at church every week. We say our health is important as we gorge on fatty processed foods. We say lots of things don't we.

We say lots of things, but our actions speak much louder then our words. Be it time spent shopping, primping, and preparing ones self for the public in the morning or hours spent sitting on the right committees and serving on the right boards. Perhaps for you its always ensuring that your crafted image is pleasing to all or at least pleasing to those who "count".

We say lots of things, but our actions show that we care far to much about appearances and not nearly enough about God, our families, and our health.

Your time on this earth is limited! Stop saying things that no one believes and start living the life you have always intended to live!

Care less what others think and then you won't care who knows your a weirdo!

Are you Famous?

I got a post from Christine Miserandino a few days ago that invited me to donate to a lupus walk fundraiser she was participating in at a local park. I got super excited because it meant that THE Christine Miserandino lives here in our area and if I participated in the aforementioned lupus walk I might meet her. Right now your probably thinking...who the hell is Christine Miserandino?

Others might say the same thing if you told them you were going to meet Bruno Mars, Joel Osteen, Sarah Palin, or Hillary Clinton. It occurs to me that idols are born out of very particular personal needs. For me Christine Miserandino's website helped me feel normal when I read her "Spoon Theory" and learned about her personal struggles. In her story of living with lupus I found hope right when I was feeling my worse (right after being diagnosed with ECD).

Is she famous? Probably only if you have Lupus or some other rare disease. Which makes me wonder what other perfectly normal people are famous? Are their people who get super excited when they find out their going to get to meet you? I bet there are!

Exciting to think that you may be famous right! But with that fame comes some responsibility. So wear your fame well and never forget that there is someone, a child, a friend, a coworker, or a spouse who thinks your a rockstar!

Rock On!!!

Christine Miserandino’s

Healing Prayer

Had a great visit today from the Shepherd's Singers. They are a cross between gospel choir/band/performers. The concert was the idea of a church member and I made the mistake of saying yes without properly considering what the consequences of such a long day would be for me. Luckily I have a great group of people at the church and they really stepped up. Because of them I was able to go home for two hours and get some rest.

In the future I need to do a better job of planning rest into long days. This isn't the only way that I have been trying to manage myself. In the last few months I have been doing better at not saying yes or no to anything right away. Instead I have been telling everyone that I need to think things through before answering. Interestingly, most people are very receptive to the slow contemplative model of leadership.

Once the concert was over we wrapped the evening up with a few members of the choir laying on hands and praying for healing (for me). I get the feeling thought that healing isn't in the cards for me. I feel like there is a larger purpose to my illness and that healing would prevent that larger purpose from being fulfilled. Not sure what that purpose is yet or that this line of thinking is even logical, but it is how I feel.

There is value to be found in suffering. I don't wish for it but I'm not going to lament if suffering is in the cards for me.

Life is short!

I had an interesting conversation with a friend who is struggling with breast cancer tonight. She said the reason people think we are emotionally unstable is because we don't put up with bull anymore.

She says that people who are dealing with rare diseases, cancer, etc. are all acutely aware of the limits to our longevity and because of this knowledge we find ourselves unwilling to put up with time being wasted on personal drama, silly gripes, or general rudeness. Our understanding that this may all end soon colors our every interaction with the world.

Which is in a lot of ways the way a 90 year old lives. The only difference is when I see a 90 year old speaking their mind I smile and think, damn...they just don't care anymore! When someone sees me doing the same think they think I'm crazy or unstable.

Moral of the story? In about 50 years people will start smiling when I act crazy, until then I will just have to put up with their disapproval.

Sleep Needed

It has been quite a long week. I had a few nights of taxi duty (back and forth to soccer) followed by HW until 10:00pm (Middle School is giving out a lot of HW these days). I had one night where I couldn't sleep because I was aggravated, for no particular reason. Then two nights this week were spent doing meetings and the bulletin for the church. The good news is there are some very exciting things on tap for the future of the church!

Unfortunately, all this late work has left me feeling very tired and has increased my long bone pain this week. I am starting to see how much sleep plays a role in my overall well being. With diminished capacity to accomplish my few remaining tasks for the week I am going to have to prioritize which things are the most important. I hate having to admit personal limitations!

Sometimes I feel like a 37 year old stuck in an 80 year old body.



Enjoy your weekend. Hug somebody you love!