Problems Rant

One of the big problems with life is that what we have to accomplish does not change due to our energy level. I for instance can barely move (for reasons unknown to me). So today I should just relax and recharge, but life doesn't work that way.

Today DawnMarie is leaving early to take Alyssa to a soccer tournament. I am taking the kids with me to church. At church today I will be doing the sermon, communion, a baptism, 1st Advent Reading, setting up the Sunday school area for advent, setting up the church for advent. It is a busy day.

People get upset with me for not resting more, but I don't see them stepping up and taking care of business. The fact is some things just have to get done and I am the one who has to do it.

What I find funny is that people love to talk like their concerned saying, "why didn''t you tell me/us how your feeling?" or "let me know when you need to stop". But when I say I think that's enough, or we don't need to do anything more, or why commit ourselves to one more thing, or I am getting tired, they don't want to hear that. They want to do that one more thing...well there are consequences to pushing my body to hard.

The funny thing is I don't care anymore if people are upset when I am done I am done. SO...today I have to do the sermon, communion, and baptism. Everything else...we'll see.

Sleeping

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

Post Thanksgiving Blues

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

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

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

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

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

A Charlie Brown Thanksgiving

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

Happy Thankanukkah -Give Thanks

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

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

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

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

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

Thanksgiving beyond the table.

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

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

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

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

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

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

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

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

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

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

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

Gate Keepers

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

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

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

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

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

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

The Holy Grail

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

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

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

2.) "You should see a nutritionist"

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

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

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



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

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

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

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

No Rest For The Weary

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

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

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

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

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


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

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

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




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

Exhaustion

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

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

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

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

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

Tufts University Health and Nutrition Letter

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

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

Tufts University H&NL

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

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

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

Experiencing Change

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

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

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

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

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

DawnMarie's Turn

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

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

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

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

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

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

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

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

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

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

Living with Brad is never dull!

I always feel loved!