Combo

Was able to babysit, work at the church, and then take the kids out for dinner. I was productive and useful, big win!

Makes me wonder what other things I'm doing the hard way that could be made much easier. 

Long Week

This is the end to one hell of a week. From work drama to mental exhaustion it has had it all. I'm not worried though because I am sure things will get better. I am starting the week off right with an early bedtime and a crockpot full of chicken sausage and yam stew cooking downstairs. 

This week I hope to live with more balance and peace. Hopefully I will find some time to check in with my doctor for new blood work and a basic exam. 

Otherwise it's all about learning to live with all this as my new normal. Easier said then done when your a stubborn Crump. 

Filled with Upset

"Feeling overwhelmed by anger and sadness. There is something wrong with me." 

I wrote this in the morning and I am feeling much better now. I was so mad this morning (for no reason). Not violently mad but just filled with upset and sorrow. 

What's crazy is that I knew my balance was off but couldn't shake the mood.

A bunch of people texted and checked up on me (thank you).

So many people have told me that it is going to take time to learn how to live with Erdheim Chester Disease, Pancreatic Enzyme Deficency, Splenomegaly, IGA Deficency, and Low T.

The problem is that I'm not sure this is something I really want to learn to live with. 

Giving Your All

I have been feeling better as of late and as such have started to pick back up more of the familial obligations. 

I am trying to do my share of the ironing, trash, dishes, taxi duty, and just be generally more present in the lives of my kids. The thing is though...it's to much!

It's not to much for me to handle physically. I'm just not willing to give my whole life up to the constant rush of running from one event to another all the time. It doesn't work for me or for my relationships with others. It doesn't make me a better father and it certainly hasn't helped me be a better husband.

The thing that bothers me most though is that it seems to be getting worse every year. It used to be that we fought to keep at least Friday clear but now even that last bastion of peace has been stollen from me. 

I am done. 

Dad's on strike!!!!

If you want to join me you'll find me here at home sleeping, reading, and generally just doing less. 

[Update: Some have applied that this is an attack on DawnMarie. This would be a poor assumption. This is an attack on how we all live our lives now a days. With no time for renewal, family, or self. And we are surprised that families are falling apart. Call me selfish if you wish, but I refuse to live on the edge of burnout any longer.]

Impossible Honesty

AS A PATIENT I have found in the past few months that I am the most effective advocate for myself when I am honest with the doctor. Sometimes that means explaining to the doctor why my eating, living, working, etc might be masking what is a much larger problem and other times it means being honest about my true pain level (which I always rate low) while explaining that I have a high tolerance for pain. 

This honesty has led me to a long series of Indiana Jones type doctors. The type of doctor who wants to hear it all before embarking on what for me seems like an epic quest to discover all that ails me. 

My honesty has helped them help me because by being honest I have been rewarded with better health. 

AS A PASTOR I spent my first few years trying to look like I knew what I was doing. I worked hard to look "holy". I just figured it went with the job. In doing this I ended up not being authentic and that hurt my ministry. 

Now as a pastor I live my life as a open book (out loud as they say). I share my victories and my defeats, my ups and my downs. 

My honesty has helped people trust me and made me a better pastor. 

AS A TEACHER I am surrounded by a legalistic structure that hampers personal growth through learning (we do learn from our mistakes after all). This structure meant to protect students breeds miss trust among colleagues and administrators while at the same time hampering open dialogue. It makes honesty and openness impossible.

In our effort to protect kids we stop the  healing and growth that can only come through acknowledging our errors and growing from them. Thus hurting our children by hampering the development of their educators. 

I write this because I am frustrated, but not without hope that there is room for more rational minds to prevail on this issue. 

[Pardon my rant and I apologize if this post makes no sense.]

Who Inspires You?

Who inspires you with their light?

Have you ever told them?

You should. 

I find it's easy to say the hard things. Its easy to criticize, get things off our chest, unload our anger. But to turn to someone we appreciate and make ourselves vulnerable by admitting we care is a much more difficult thing to do at times.

Yet since not a single one of us know how long we are for this earth why walk around leaving things unsaid?

To Frank

I am not sure if the confidence and strength I have gained from being I'll is always a good thing. 

Fact is that people seem to prefer a world where no one really speaks their mind and instead shares vapid platitudes with each other. Of course I am not the first person to ever notice this phenomenon, just been thinking about it recently. 

What I find really weird though is how people "ask" me for my opinion and then act surprised when I give it to them or when they tell me what we are going to do and then act hurt when I have input. 

Oh well, feeling confident. Proud to be a Crump. 

[Just so you know I have considered the fact that I'm "crazy", that I'm being unreasonable, and I've given my frankness some consideration to ensure I'm not just being rude. Turns out it's not me it's everyone else. Love you all and have a great night 😀 ].

People Problems

So a coworker told me that he saw my arms yesterday and that my muscle mass was ehhhh (which was then followed by a face that said your gross). Then it was suggested that I get to the GYM. 

Seriously! What rock has this person been living under? I tried to explain my situation but faltered under the anger and embarrassment. 

I am not proud of my weakness. I don't enjoy the fact that I can barely hold my son, that I get exhausted sweeping the driveway, or that I am to week to do some of the household chores that fall into the father/husband category.

I am ashamed but not ignorant. I know that at this point maintaining my weight is more important then how I look. I know that my blood work has indicated I am in no way prepared to lift weights. I know that my testosterone level is low enough that I will need to be monitored by a physician when I start exercising again.

So to my coworker I say this. 

These are the arms of a MAN that has lived through a year of hell. 

This is the bicept of someone who lost 110 pounds in 9 months. 

This is what surviving looks like. 

Coming To Terms

I am eating more now then I was a week ago. My weight is steady for the first time in months (145). This new drug Creon is good, but I am still having pain occasionally in my back after eating.

I talked with DawnMarie tonight and we are just not sure what to do next. I could continue to use Creon even though I have not been diagnosed with any reason to take it (other then anecdotally). Alternatively, I could go to The Pancreas Center at NY Presbyterian Hospital and have them chase the root cause down.

Thing is...does it matter? If the drugs work who cares (said the guy trying to convince himself that the why isn't important). 

My Life

Normal

Things have been abnormal for a year. During this time we have meticulously followed ever medical lead, pouring over the details of every test. We have trecked all over the country visiting any doctor we could find that might help me. 

During that time we have discovered that I have ECD, am immune deficient, have an enlarged spleen, lack the appropriate pancreatic enzymes, and have low testosterone. So overall I would say things are going well. Seriously, despite all that things seem to be on an upward trend. 

Today for the first time in a long time I found myself thinking, I have energy. On a Friday! I have energy! 

The fact is things are never going to get. back to normal (my portable pharmacy of shots and pills is proof of that), but I'll take this as my new normal. It's better then one would think my life would be with so many issues. It's better then I dared to hope for a year ago. 

Rare ENOUGH!

As I begin the process of researching yet another disease (pancreatic enzyme deficiency or PED) that I have just recently been diagnosed with. I find a few random thoughts are tumbling around in my brain.

First, you would think that at some point I would be diagnosed with some sort of health problem that is common and for which a well developed treatment protocol has been developed. Nope. PED is rare, yeah!

Second, that in 2014 (even if the disease you had was rare) it would be easy to research any medical condition. Unfortunately it turns out that in the medical field so much of the information one needs is hidden behind pay walls for private medical journals.

Third, it is surprising that there aren't more groups whose primary goal it is to support people with rare diseases. 

It is clear to me that there is a lot that needs to be done to advocate for those struggling with all sorts of health issues (from issues of access to problems with being misdiagnosed). The question is how can I best serve a rare disease community with such diverse needs and such differentiated diagnosis?

How can I change this corner of the world that I am now a part of.

Empty Seat

I love the work I do. Tonight we had the third Lenten Soup Supper of the season and it was great. I will be heading home tonight well fed (thank you Mrs. Harmon) both physically and spiritually. 

As I pack up the office and prepare to head home I find myself wishing there was more time. More time to read Calvin's Commentaries, more time to study the systematic theology of McClendon, more time to serve God. 

Yet the day only has so many hours...and I'm so blessed to have the days and hours that I do have. I pray that i may continue to serve my family, my school, and my church well. 

I hope what I have to give is enough, because it certainly doesn't feel like it is.