Exhausted

One thing about Prednisone is that it builds up in your system, so when you are tapering off of Prednisone it can take a while for your body to notice the decrease in medication. I thought I had hit the low point of this current taper mid week but things have gotten progressively worse since Friday, both physically and mentally.

I was a little muddled at work on Friday (delayed responses and such), Saturday I was very tired and responded irrationally to a fair criticism my wife had of my behavior (ended up walking home), woke up Sunday very sore and already wiped out before the day even started. Today I have a Missionary couple coming to the church, which will be nice because they are doing the Sermon. Then we have a Potluck downstairs after the service so its going to be a long day.

At this point I am hoping for a week with more energy and rationality. I am also praying that my kids will be able to understand that this current version of Dad is not the "Real Dad". It makes me sad to think that this might become the new normal if I cant get off of Prednisone. 

P.S. I don't write this Blog because I need answers, need to keep people informed, or hope in someway to become famous. I write this blog because when its written it is no longer a burden to me.

Walking Home

Worst day yet...and now I am walking home from the Miracle Mile (like that's even possible). Stupid.

Friday the ?!?!

Bad day today mentally. Felt like I was in a fog all day, at one point it took me about 10 seconds for me to realize what another teacher was saying to me. It was a hard week (especially because of the Prednisone taper) but the kids at school sure have been a pleasure to teach. High School is very different from Middle School! 

Physically my back and sides are hurting more and so are my hips. Seems to be getting worse daily, hope it levels off soon. 

Upside...went to DeeDee's Diner for Dinner. TGIF

I Hate Food!

My weight is now down to 166 lbs. from a high of 254 lbs. in May. This much weight loss might have been a problem for someone who was skinny before but at 254 pounds I was clinically obese. In fact in the beginning I was happy to be losing weight. 

However, after 8 months it has now become a problem. I think I only have 10 pounds left before I drop below my recommended BMI for my height and age.

I have spoken to the doctor about my continued weight loss and he just asked me if it had slowed, which it has. The re-reading of my MRI and CT scan by the specialist at JHU shows significant splenetic and pancreatic involvement of the ECD inflammation. This seems to me to indicate that my issues with fatty foods and starches may be a permanent issue.

At this point I am doing my best to increase my calories by eating every two hours but to be honest I am starting to hate eating. I am rarely "hungry" and have begun to see eating as a task. 

This morning I tried to eat some pineapple, cantaloupe, strawberries, and eggbeaters (I can't eat regular eggs). I was painfully full when I got done. My wife said I was trying to eat to much at which point I had a mental break and spazed out. I don't know what to do...

I hate food! I hate eating! I am depressed!  

Tired

The Prednisone taper from 10mg to 5mg has been hard so far. I have noticed a significant increase in bone pain in my hips and arms (funny thing is I am not sure if bone pain can be related to a reduction in Prednisone). I am also very tired and grumpy. I have been able to hold it together and be appropriate at work but by the time I get home I am exhausted and crazy.

Feeling....tired, dissapointed in myself, angry.

That is all.

Resilency in Life

 

This is Keegan, she is holding her eye because she just punched herself in the face while playing Wii Baseball. Now lets ignore the fact that she just punched herself in the face (because it would be wrong to tease someone while they are half blind) and instead focus in her resiliency. She had many ways she could have responded to this "crisis":

1.) She could have quit playing and demanded an ice pack
2.) She could have called a time out to check the damage to her eye.
3.) she could have fallen to the floor in a heap crying.

But no...she did none of those things. Instead she kept playing, unwilling to give up even a moment of her life to this minor injury (no permanent eye damage was done). We all should be like this when life punches us in the eye.

Prednisone Taper

Medical Update: 

WARNING!!!! I am tapering down to 5mg of Prednisone tomorrow. Possible side effects include extreme grumpiness, fatigue, and forgetfulness. 

I am excited to be weaning off of Prednisone, unfortunately it will still be two more months before I can stop (30 days at 5 mg and then 30 days at 2.5 mg). Possible problems of weaning off of Prednisone are increased pain caused by inflammation. Currently my bone and back pain (caused by ECD inflammation) are holding at tolerable levels. Please pray that they do not increase as I taper the Prednisone because I really want to get off this medicine (makes me feel nuts). Another possible side effect of weaning is that my body could fail restart its own hormone production. Only time will tell. 

Another issue of unknown origin and cause is that I have been experiencing more instances of my left leg giving way as I walk. It happened 9 times today, the most ever. Luckily I haven't fallen yet but I got close today!  Oh well...not like I've never fallen before. In fact I've been practicing since I was a kid. 

Feeling very fatigued today, let's hope a good nights sleep does the trick. 

Cup Song Crying Fit

I am finding that I am much more aware of the value of groups and the importance of people working together. I can't help but think that we spend far to much time fighting and hating each other. Perhaps more time spent together on silly projects like this one shown below could change the way we see each other.

Worth watching, made me cry uncontrollably for like 2 minutes. So that either means its a good video or the Prednisone has destroyed my ability to control my emotions.  (Thanks Nicole for sharing the video!).

God in our life

Had a great day today! It was a productive Friday at work, with full lessons and active learning happening until the bell. I am really enjoying this new group of students that I am working with at the High School, plus the grade team I have been assigned to is strong and supportive.

We had a Union election today in which I had been nominated. I lost to a wonderful woman who I have had the pleasure of hearing preach at my church. I am not upset about loosing, in fact I am slightly relieved that I didn't have to take the responsibility on. For the first time in my life I lost a popularity contest and it didn't bother me.

Why? Because I trust that God is working in my life through all things! All things (including Union elections).

Express Scripts

I have come to the conclusion recently that Express Scripts is the worst run company EVER! In their most recent act of mediocrity they have messed up my injectible drug order, insisting I use their mail order system 60 days before I was required by their own company policy to do so (then not informing me of this change in requirement until it was to late to use their mail order system).

I have since then spent 5 hours (seriously! not even joking!) on the phone trying to fix errors they made in delivery, quantity, and cost of said drug. Each time I call Express Scripts I am given the honor of speaking to someone who has no ability to help me, puts me on hold in three minute increments, and then acts suprised when I get upset.

Lessons learned...speaking in fake Chinese accent bypasses the Express Script check in process and forwards you directly to a customer service representative, saying no its not okay to put me on hold does not mean that they won't put you on hold, and Express Scripts does not respond well to being billed by their customers for time spent helping them fix their mistakes.

I Love JHU!

Just got off of the phone with Dr. Scheel at John Hopkins University, he is amazing!

Just to update you all I sent a lengthy email which outlined seven questions I wanted answered. The two most important being 1.) What is that growth on my Pancreas? 2.) What is the long term consequence of ECD on my bones?

He had his secretary call me to set up a appropriate time to call, which was nice because so many of these doctors call during work hours and expect me to be able to talk (which of course can't happen).

DawnMarie and I listened as he went through each point explaining his thoughts and his plans to address each concern that I expressed. He expressed on more then one occasion that I was not wrong in having concerns and he was happy to answer them. This was nice.

Final conclusion on Pancreas...he doesn't think that the Pancreas growth is anything other then ECD tissue (which shouldn't be an issue in the long run), but he is going to have one of the specialists at JHU take a look. He then said this Dr. who was going to review the films invented the CT scan so if he says its all clear then you don't have anything to worry about. The funny thing is he might actually be serious when he says this guy invented the CT Scan, with the specialists at JHU you never know.

Final conclusion on consequences of ECD on my bones...if the treatment works he believes I will eventually be relieved of all pain and that all issues will resolve themselves. I find this optimistic viewpoint a little hard to believe considering just 2 years ago ECD patients had a estimated survival rate of just 5 years.

But perhaps it will grow on me. Who knows, maybe the glass is actually half full.

As usual only time will tell what God has in store for our family. 

Feeling Respected

Arrogance is an amazing character trait isn’t it! I have recently had the pleasure of spending some time with a few people who insist they are always correct, more intelligent, and generally superior then the others around them. In the past I might have found this offensive but with a little introspection I can see how I have exhibited these same characteristics myself in the past, therefore how could I be offended?

In fact I now find arrogance humorous. What’s interesting is that the smartest people I know are never arrogant. Whether its my fellow math teacher who has an amazingly complete understanding of measure theory, my Doctor at John Hopkins University who is one of the top specialists in his field, or one of my Church members who sees EVERYTHING from a spiritual point of view…they all default to a diminutive or measured pause when I speak to them.

There is something comforting about their doing this. I feel respected when they pause before responding because it acknowledges there is value in my question (its not just a stupid thought not worth their time).

I hope as I continue to grow I find more ways to show people I respect them with my actions, not just my words.

"Caught" sitting

With one full week of work (teaching) under my belt it looks like I will be able to keep doing my job. Before school started I was worried that my body might not be able to handle it, plus my voice was struggling to recover from being intubated in June. While there has been a significant increase in my bone pain as compared to this summer and my voice was a little sore it was not as bad as I expected.

One thing does bother me though...getting "caught" sitting. I have explained to my boss that I need to sit down while I am teaching and she has been very understanding, even going so far as to check in with me to make sure I have everything I need. As a teacher though it feels wrong to sit! I feel like I should be constantly circling the room, like a shark (a nice shark). So even though 70 percent of the time I'm up and moving I have been "caught" sitting twice and I find it embarrassing.

I think what bothers me most is that my sitting is proof I'm not 100 percent and I don't like the implication of weakness that comes with that admission. Ironically my weakness has made me rely more heavily on small groups, forced me to integrate projects more regularly, and made me more responsive to individual students needs.

So perhaps in my weakness there is strength, or at least a unique opportunity to improve my craft as a teacher, but I still hate getting "Caught" sitting.

Bad Dreams

Had some really disturbing dreams last night. I couldn't really hold onto their content but I know I woke up twice last night scared, which hasn't happened to me since I was a little kid. Plus I was very tired when I woke up even though I had gotten 8 hours of sleep.

I wonder if there is any connection between my pain level and my dreams, because when I woke up this morning I had a lot of leg pain, particularly on my right side. My Pet Scan showed some possible metastatic activity in the same area so I can't help but wonder if there is some correlation. I was able though to get everything that needed to get done completed this morning and made it out the door on time.Which seems to be a rarer and rarer thing for me now a days.

The good news is that today is Sunday. I love coming to church and getting to preach. I can tell that today is going to be a hard day physically (because of the pain) but I'm not worried because I get to share in the fellowship of God's people, run a new member class, and share God's word. I have a hard time imagining anything better then that (other then being married to my lovely wife of course).


P.S. DawnMarie and I sat down last night and came up with a series of questions we had based on my PET Scan and sent them off to my Doctor. Please pray that he will help us resolve the questions that still remain, particularly with the 2cm growth on my Pancreas. 

You look like You

I bumped into someone at a party tonight who looked at me for a few minutes then asked if I had family in town. I do not have family within 3000 miles of here so we quickly ruled that out. She then insisted that she knew someone who looked a lot like me.

I knew that she was talking about a heavier version of me so I said the other person you saw was a different version of me, to which she responded with a I think this guys crazy face. I see it a lot so I'm used to it, then I showed her my drivers license with my old photo on it and she was shocked. The weight loss made her think I was a different person!

What's funny though is I feel like a different person, but not because I have lost weight. I feel like a different person because I have been through so much in the last six months. I feel transformed by the whole experience and were not even done yet. In fact I suspect this is just the begining of this journey/nightmare.

Perspective is Amazing

It was over 90 degree's toady. 6 months ago I would have freaked out about the heat (I probably even would have come to work in shorts). I would have rushed the students in and out of my room so that I could save every precious drop of AC in the room. This year I barely noticed that it was warm. I might not have even registered the heat if it wouldn't have been for the other people complaining about how hot it was while they sweated profusely.

Whats different? I weigh less and perhaps one or both of the medications I am on is effecting me in some weird way. 

6 months ago I would scoff at all those"healthy" people who were parking in handicap spots and walking into the store. I would internally fume at the fact that they were stealing those spots from people who really needed them.

Whats different? This year I realize that one can look healthy and still be dealing with significant health issues. 

Perspective is an amazing thing isn't it! Congratulations to all of you who maintain a generous perspective without having to experience something personally.For those of us who are not understanding and have failed to be loving and generous, God's grace is big enough for you!

It's ALL a Privilege

I went to my daughter's soccer practice tonight after what has been a long few days. My legs and arms are sore (not sure why). It occurred to me as I was sitting there in the bleachers that I have just accepted the diagnosis of ECD and the long bone thickening it comes with without asking what the consequence will be. What does thickening of the long bones cause?

I panicked a little and started walking the track, not for exercise but because I could (even though it hurt). DawnMarie looked at me like I was going crazy for the first lap and then she asked what I was doing. I responded, "enjoying the privilege of walking"

Walking is a real privilege one that we enjoy without really thinking about it. As I walked slowly around the track I reflected on how many things we take for granted until we are faced with their loss. I had always taken my ability to walk for granted and while I don't think I will be giving up walking anytime soon, the potential to lose this ability that is so simple and yet such an important part of who I am as a person is a little freaky.

It occurs to me that even the most basic things we do are a privilege! Remember that the next time you take out the trash, drive your car, or hug your kids.

Slow Start

I am having trouble remembering all the details, this is new.

I have always been a very organized person who appreciates being on time and the reliability of someone who is detail oriented. Today in just the first 45 minutes of the day I forgot/failed to take my pills, give myself my shot, wake up on time, set out my clothes, brush my teeth (but I did floss), iron my daughters school shirt, take the dog out for a walk.

Is this because of the Prednisone and Kineret or is it caused by normal stress related to going back to work? That's one of the problems I'm facing with ECD, figuring out if what is going on is a symptom of the disease (and the drugs that come with them) or a normal part of the life process. Either way these "lapses" are completely unacceptable.

My Dad once said on our way to church (Westminster in Olympia, WA.), "its better to be an hour early then 5 minutes late". I have spent my life applying this measure of accountability to everything I do. It's better to be overly organized then to forget even the smallest thing. It's better to have 15 shirts ironed in case you need one. It's better to do everything then miss something. If not your no longer reliable....and I don't think I could live with that.

I Wish I Had What You Have

First day teaching with kids today! I've lost 80+ pounds since most of the students saw me last year and there reactions were extreme.There was a lot of verbalization of disbelief and some random staring and pointing, it all made me a little uncomfortable so i ignored most of the antics. A few asked what happened to me and I explained that I had been sick.

More then one student responded with, "I wish I had what you had Mr. Crump".

No you don't!!! 

One very nice young man asked me how I was, he asked me what I had, what it was called, and if I was going to be okay. I told him I'm not sure how its all going to turn out but I have a great team of doctors who really understand my disease and are knowledgeable about how to treat it.

Maybe if I say it enough time I will start to believe it.  

Great kid though. His parents should be proud. I hope my son grows up to be a caring and sensitive young man like that.

Tired

My wife humoring me with a photo before my PET Scan (she is amazing!).

I keep trying my best to pace myself but the fact is I just have to get some things done.

This long weekend started on Thursday with a Soccer Meeting that went until 8pm followed by a drive to Maryland (arrived 11:45pm). The next morning a JHU visit that started at 9:00am and went past noon, followed by a 5 hour drive back to Floral Park. Unfortunately, I missed a Presbytery Meeting (that I really wanted to attend because I was to tired). Friday we had some shopping/cleaning/prep to do for the block party. Block Party Saturday. Preaching Sunday followed by a nap (3 hours) and some lesson planning.

The funny thing is that this is the lightened version of our life with my wife picking up a bunch of other stuff.

Yesterday was our block party which ended up being lots of fun for everyone (about 60 people attended over the course of the day). The kids played so hard that they fell asleep the first place they sat down. I turned the block party into a surprise party for my wife's 40th by adding balloons and cake when she stepped out briefly to run an errand. All day people told me to take it easy, to sit down, to rest...not realistic!

The fact is I needed to do something to recognize my wife's 40th or I would be a douche bag. This option in the long run I believe was actually the easiest to accomplish. I am hurting today (for the first time my arm bones are sore) and I am tired but it is what it is.

The truth is I needed (wanted) to get done everything that I had scheduled this weekend. I did most of it, but I refuse to give up any more of my life to being sick! I would rather go down fighting then slowly waste away.


P.S. Still waiting on the PET Scan results...nervous.

My PET Scan experience

A recent comment on my Blog asked me how the PET Scan went, how was the experience?


 
My wife and I headed down to Baltimore late because of some family commitments so when we got to our hotel around 11:30pm I was very tired and not in a great mood. This continued through the morning because I had to fast and was still awaiting resolution of a problem with my medication order (I will explain that drama another day).

Shortly after arriving at JHU I got called into the back by a very calm tech that looked like a California Surfer (reminded me of a friend from work named Josh) and I found this familiarity calming. He put me in a lead lined room with a steal door and a video camera. I know what your thinking...it's about time they locked me up right! This room had a huge comfy recliner and after he set up my IV he stepped out and sent in the doctor.

The doctor sat down and gave me this inquisitive look that I am starting to get used to from doctors, because it is the look they give you right before they admit they know nothing about your disease and then start asking you to explain it to them. I don't normally mind explaining as long as they don't try to act all knowing while at the same time asking me to help them understand (this has happened a few times).

When he left, the California Surfer came back and gave me two cups of chalky drink and a shot of some sort of radioactive isotope. Then he turned the light out and left me in the quiet dark room. I couldn't sleep so I sang my favorite hymns and at some point drifted off to a state of peace with no worries for what the future, post PET Scan, would look like.

Then the door opened and I was walked over to the PET Scan machine, where I was strapped onto the tray that feeds the machine for over an hour. I like the feeling of being tied to the tray, it is calming. The room was very quiet and I was told to stay very still, which I did. In fact I think I fell asleep a few time.

Afterwards they walked me out and honestly since the test I haven't worried about the results. The whole things still feels very surreal.

The Spoon Theory

 The Spoon Theory helped me understand what it was going to be like living with Erdheim Chester Disease. You can read the story here: Link

 

The spoon theory describes how people with chronic illnesses live.

Each day, I start with this jar filled with spoons. I never know how many spoons are in there. Did I sleep well, are my legs hurting, what did I do yesterday, am I getting the flu, what’s the weather like?

All these things and a lot more influence how many spoons I have to use that day in my jar.

I always hope I have a lot of spoons, but the last week as I have started to work again my number of spoons has been steadily decreasing, leaving me in pain and wondering how I will find enough spoons to teach all week long.

Shrodinger's Thought Experiment

I have an appointment at John Hopkins for a PET Scan today. The Dr. is looking to set a baseline for the extent to which this disease ECD has invaded my body. Some people have ECD growths in their lungs, heart, brain, etc. but so far I just have it in my abdomen and pelvis. I mean I may have ECD involvement in all those other areas but right now as I am writing this post I only know of its existence in my abdomen and pelvis.
My lack of knowledge reminds me of the Physicist Erwin Shrodinger who proposed a thought experiment that proved a cat could be both alive and dead at the same time, crazy I know! He argued that since one did not know if the cat which was in a sealed box was alive or dead it was actually both alive and dead at the same time (read below).

I like this explanation of Shrodinger's Theory plus its funny.

If I apply Shrodinger's theory to my disease...today, right now, before I go in and get this PET Scan done I could be one of the healthiest ECD patient ever. I have little known ECD involvement, little bone pain and positive hopes for a cure. Today, right now, before I go in and get the PET Scan done I could also be horribly sick with ECD everywhere including in my brain. My body according to Shrodinger is both in great shape and a horrible wreck until it is observed. It's easy to see why no one liked Shrodinger.

So here we are again waiting, oh the waiting! Lets hope my prognosis stays the same once the results come back, but if they don't I will be fine Crump's are born resilient.

Histocytosis Awareness Month

I am a Histio Warrior not by choice but because I have been diagnosed with Erdheim Chester Disease, a rare histiocytic disorder.

Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation.  This group is made up of a wide variety of conditions that can affect both children and adults.  In order to reduce confusion, in 1987, the Histiocyte Society classified these disorders into three groups based on the types of histiocyte cells involved:

• The first group is called a dendritic cell disorder, and the most common disease in this group is Langerhans cell histiocytosis (LCH).  Also included in this group are more rare diseases, juvenile xanthogranuloma (JXG) and Erdheim-Chester Disease (ECD).

•  The second group is called a macrophage cell disorder, and includes primarily hemophagocytic lymphohistiocytosis (HLH) and Rosai-Dorfman Disease (RD). 

• The third group is called malignant histiocytosis and includes certain kinds of leukemia and malignant tumors. 

 We all have a finite time to spend on this earth and none of us know how long we will live. The difference between most people and those of us fighting histiocytic disorders is we have a pretty good idea of what will kill us when our time comes.

It's a little unerving at times.

First Mourning

So today was the first day back to work…wow! In the past my alarm was set for 6am and I was out of the house by 6:35. This included hygiene, walking the dog, and ironing the occasional shirt (I would pick up breakfast and a big gulp on the way to work).

Today I woke up at 5 and took my Kineret shot out of the fridge (it has to warm up for an hour), cooked breakfast, hygiene, ironed Alyssa’s shirt, gave myself my shot, took my pills (10), walked the dog, and I was out of the house by 6:40. What a difference!

It is amazing how the simple things in life are never really that simple. Eating simple and living healthy should be easier but it’s not. All of you who live this life of health issues, allergies, etc. I give you my emotional support. 

I mourn the old ways but don't want them back, confusing I know. 

Service Animals

Recently there was a big article in the newspaper about a man who was denied service at a diner because of his service dog. It turns out the dog didn't have the best manners (eating from the owners plate being just one example) and this made the business owner suspicious the service animal was a fake so he kicked the guy out. It turns out the dog was a real "certified" service animal and had been trained to respond to the man's PTSD attacks by helping to distract him.

 I am not disabled and God willing I never will be but i really think the concept of psychiatric service dogs are a great idea. The picture you see here is Gracie she's my pet and is definitley not a service dog.

According to the Americans with Disabilities Act (ADA), a service animal must be individually trained to do work or perform tasks of benefit to a disabled individual in order to be legally elevated from pet status to service animal status.  It is the specially trained tasks or work performed on command or cue that legally exempts a service dog [service animal] and his disabled handler from the “No Pets Allowed” policies of stores, restaurants and other places of public accommodation under the ADA. 

Gracie has no training, but she calms me when I am upset. Gracie has no training, but when I was really sick she would  not leave my side. Gracie has no training, but when I was in lots of pain after my surgery she would growl at anyone who looked like they were going to try to sit with, near, or on me (kids don't understand when you tell them daddy's chest and stomach hurt).

Imagine then what a well trained service animal could do for someone suffering from a psychiatric disorder. A dog could calm them, remind them to take their medicine and help then escape confrontation. How many people do we have living on the streets of America who could be productive members of society if they just had a dog!

What is really important?

Amazing Cartoon about what's really important in life.

zenpencils.com