So Much

I have been feeling stuck recently when it comes to my health. You see for all intents and purposes I have arrived at a stalemate in my battle with Erdheim Chester Disease.

The thing is it may not really be a permanent stalemate so I have to go get a mri or ct scan or fb scan once every 6 months.  And so now I survive from one 6th month period to the next each time praying that I'll be granted another 6 months until my next exam. 

Meanwhile I am still trying to finish seeing all the doctors that the NIH suggested. 
1. I saw the gastroenterologist who grave me a drug called Creon that was supposed to cure my Pancreatic problems but instead has just caused unnecessary side effects. It was like 8 pills a day (for the rest of my life ) and I just decided I wasn't willing to go down that road. So I am trying to maintain my weight more naturally but I just don't have the appetite except for when it comes to frozen yogurt. 
2. I have an appointment to see an immunologist in June, but I don't trust he'll see my health issues as anything more then a long term consequence of ECD that I am just gong to have to learn to accept. 
3. After that I just have to schedule an appointment with a hematologist.
4. I have an appointment at MSKCC in July (testing me for the B-raf mutation while reviewing my biopsy slides and then having a whole set of scans done) for tests that if confirmed negative will mean I am not eligible to participate in a study at MSKCC that is "curing" people with ECD and the B-raf mutation. Thus ending my hope for a cure (at least currently).

I feel Guilty.
I feel like I should be happy with how well I'm doing but I feel like I'm really just pretending like everything is okay while we all wait for my next health disaster to occur.

This along with all the elements of my real life (as it existed prior to ECD) that draw my time, attention, and energy have left me unable to express my thoughts clearly about how I feel. Tired, Energetic, Blessed, Scared, Tense, Angry, Gracious, and Burnt Out.

My future seems great, it just doesn't feel that way yet. 

Name

A baby Alpaca is called a Cria, A baby Badger is called a Kit, A baby Grasshopper is a Nymph, and a Baby Ox is called a Stot. What does one call these ridiculously cute guys? Platypus. Yup, that’s is. There is no name for the baby version of the Platypus.

 

They do exist though. They certainly are capable of causing one to feel happy (heck I want to adopt one). If we saw one being abused or killed we would respond with alarm and disgust. Just because something doesn’t have an officially designated name does not mean it is not important, that it does not exist, or that you are crazy for thinking about it.

Every day people all over this world are diagnosed with diseases that have no category in which they can be placed. Erdheim Chester Disease for instance is not defined as cancer or as an autoimmune disorder (even though it carries characteristics of both). So when people ask us what we have we say ECD…but its hard to describe after that.

Names help us categorize things. Names help us group things. Names help us figure out where we belong. I pray every day that soon ECD and all other un slated rare diseases will be given the power of a name. Not just the name of the disease but the name of the family in which their disease belongs, because when one has a family one has understanding, direction, and support.

Well Enough

I am alive and if being alive is the standard by which we judge our life then I am doing well. 

The thing is I meet people every day who are alive but their lives are not going well. Many of them are isolated and rarely receive visitors while others spend large portions of their day creating drama and fomenting chaos. If that were not bad enough far to many people I know spend all of their time running from one appointment to the next never really enjoying their lives at all. 

They are alive but they are not doing well.   They survive each day but they never really live! 

I want to live boldly!!!

I don't know about you but I have grand dreams for my life. I want to excel at everything I do. I want to be the worlds best husband. I want to get my doctoral degree. I want to be the type of father that raises children who will inspire others. I want to lead my congregation in faith and follow the Lord where He leads me. 

If I could do all these things...it would be amazing. 

But to tell you the truth I would be happy to have just one more day...

...to hug my kids...

...to hold my wife...

...to enjoy the flowers and breath deeply. 

You see one thing I have learned this year is that none of us know how long we are for this earth, so with that in mind I will do my best to squeeze every drop of life out of the time I have and I think that will end up being well enough. 

Spring

Spring brings with it pure sunshine and nourishing rain that will soon turn our neighborhood into a urban oasis. I look forward to the end of dull gray days that end as cold as they started. 

I am also looking forward to my last visit with a new doctor (at least new to me), in June. 

I still have an appointment with Dr. Eli Diamond at Memorial Sloan-Kettering (which will take 2-3 days) and Dr. Carsons at Winthrop University Hospital in June, but there seems to be an end in sight to the constant list of appointments. It's not so much that I mind going to the doctor it's just a lot of work to see a new doctor.

I look forward to someday soon settling into a predictable pattern of check ups with doctors who know me well. Where the hardest question to answer will be, "have there been any changes to your insurance?", or "how have you been feeling?"

Instead of, "we need you to get us the slides that were made of your ECD biopsies", or "could you bring a copy of all the labs you've had done in the last year?", or "we need your families medical history for the last five generations".

These last few visits will hopefully end my time of discovery and help me transition into an era of stability and stagnation (the best I believe I can hope for with ECD at this point). 

We shall see. 

"If God is good and all powerful...how come there is so much evil in the world?"

Ever since I was first diagnosed with ECD I have struggled with how to respond when people tell me that God is in control and it will all work out, because i know they think this means I will get better. I know God is in control, but I don't take that to mean that I will ever be cured of this disease (or that there will even be a tomorrow to wake up to). 

I am okay with this uncertainty, yet i understand for many the notion that God would allow disease, suffering, and death to happen (particularly to those that serve him) is a hard thing to understand. Personally this uncertainty has always given me comfort because it proves to me that God is much mightier and more complex then I can ever, then I should ever hope to understand. For others though this uncertainty causes confusion and pain.

Today I read a wonderful blog by a Pastor I know that shares some thoughts on the question, "If God is good and all powerful...how come there is so much evil in the world?". I suggest you check it out at the link below.
 
Blog of Pastor Rhyan Smith

Who Am I

I just got done yelling at the cashier at Stop and Shop. His crime?!?! 

This guy just stood there staring at me as I bagged all the groceries. He also ran other food up on my eggs and bread, poor form for sure but hardly worth causing a scene over. Feeling very embarrassed plus apologizing ten seconds after yelling makes you look even more crazy.

I have got to find a doctor who can help me with my low Testosterone! I find myself saying things, responding to others, and generally acting like someone who is not me. I have noticed that exhaustion and stress make it worse so....good night. I have to get my sanity sleep.

Do You know Me?

How about you get to know me then skip the judgement since none of us are perfect. I'll try my best to do the same.

Three Weeks Depression

I have written a lot about being a Pastor on this blog, but in general I try my best to avoid talking about my work as a teacher because in the big scheme of things I have found that in the long run it just doesn't work out well (people tend to get fired for blog's they write about teaching). However, because of recent events I find myself unable to move forward without talking about teaching.

In the last eight months I have seen the initial consequences of common core reverberate through our school system. Under this new model administrators are constantly stressing their staff out with changes infinitum and then being angry with them for acting stressed. This new model pushes for results that are not realistic for any teacher to meet and constantly draws the teachers attention away from their most important task, teaching. The resulting pressure put on brand new teachers is enormous and it does not help them grow, then they are denied tenure for not being able to meet what were from the onset unrealistic demands.

The consequence for me though has been that those that have been hurt by this new system come to me in crisis. I have always attracted people struggling with their life (people feel comfortable talking to me) so this was not really a surprise for me. I have when asked advised as best I know how and served them to the best of my ability. My proactive support of what are an amazing group of teachers has had consequences....

These consequences have been incredibly stressful for me for two reasons. First, because I have been sick and my body's ability to respond to stress is low thus I have become more fatigued and tired.  Second, because the the stress is coming from someone that I used to respect greatly and now I feel betrayed. Today though I saw this quote from Albert Einstein, "In the middle of every difficulty lies opportunity".

I am glad that I did what was right as an experienced educator and stood up for those who needed help. It was the right thing to do! I am happy I was there to serve those who have less experience and needed someone to talk to! It was the right thing to do! Now I will start looking for a new opportunity in teaching in which my skills as a Mentor and leader will be seen as a value and not a liability. 

People

I have noticed in the last few weeks that there are lots of people who think they are right. I don't mean that they are pretty sure they are right and are willing to hear the other side of the issue. I mean they are 100% sure they are correct.

DANGER WILL ROBINSON!!!!!!

When you start thinking like that it is a sign that your EGO has outstretched you ability to think logically. Which is fine if you realize that is what's going on and your willing to accept the consequences of your choices.

Be careful though, because those that ignore the counsel of others, that disregard the experience surrounding them, that destroy those who disagree with them all for the benefit of personal gain soon find that themselves all alone (ask Donald Sterling).

Someday you will need other people and if your not careful there will be no one left to give you a hand.