Lenten Exhaustion

While most of my teaching colleagues are off to enjoy a week of sun and fun somewhere far warmer then NY I am preparing for Holy Week. 

I love Holy Week!

But...I'm not the energizer bunny that I once was. I felt this hard truth today. Yesterday we met to prepare the hall for our Good Friday potluck and by the time worship service ended today I was DONE (sore in my hips, arms and legs/pure exhaustion).

I am going to have to pace myself this week or I won't make it. 

On Wednesday we have our last Lenten Soup Supper, Thursday is our Maundy Thursday Service, Friday is a 12-5pm Good Friday Service, and then it ends with a long day on Easter Sunday. 

Sounds like a lot (because it is!), but I am excited. Holy Week is filled with passion, hope, and love. The best part being we participate in it as a church family. 

Slow and Steady then will be the task. 

Truth

Focus

Having a hard time focusing on what really matters. I find myself distracted from what is important by the negligence and inexperience of others. 

Sigh...why do we make everything in our society so much more difficult then it needs to be? 

- New prescriptions are a pain to get started. 

- Injectibles come through a seperate provider. 

- Dr's appointments are in the middle of the work day.

- I am constantly prevented from getting things done by people who have little experience and even less common sense. 

-My Dr.'s and Insurance companies can't seem to figure out how to work with each other.

And it goes on and on.

Folks, we don't have to accept all this drama as the new norm! Things don't have to be this way! 

Moody Day

Having one of those days where I feel like I am never going to stop being angry. Problem is I can't tell if I'm rationally upset about a purposeful slight by a rude person or irrationally responding to an imagined insult. 

Welcome to the crazy world of someone living with low T. 

Purpose

I don't know about you but I've always felt like there was some sort of master plan for my life. I believe now that I understand part of that plan... that what I am being called to do in this phase of my life is to live my diseased life so that I might understand the suffering of others in a more intimate way.

For example, today I spoke with someone whose loved one was hospitalized because they stopped taking there medication. I didn't take my pills today. I know I need them, I know they are helpful, I don't want to be on them. I can empathize with this person. I can understand wanting to ignore all the logic because of ones gut desire to be done with it all.

Tomorrow I will give myself my 245th Kineret shot. If I live to be 70 I will have had to give myself 12,006 of these shots. People with diabetes understand the life the shot gives and the pain that it causes, the freedom it takes from you. Now I understand their walk just a little but more.

Maybe the secret to life's plan for us all is that there is no grand plan, no one huge thing we were put here to do. Perhaps our life's purpose is to do the best we can every day...and that's good enough. 

Moving On

Found myself getting upset again this afternoon (because Brad wasn't listening and wouldn't stop talking) but I was able to get a few minutes of peace and relax a little. Then we went for a walk and had some frozen yogurt. 

I'm not perfect. I know this, but when I fail to be the best father I can be it upsets me. Heck when I fail to be the best "______" it upsets me. I suppose the belief that perfection is even an attainable goal is the curse of being a Crump.

It is something I am going to have to get over soon though before my failure to meet my own standard drives me nuts. 

Lost

I got my lab work back today. They take a circuitous route from near my home where the blood is drawn, to a local lab that processes the order, to JHU where the results are sent, back to me when my doctor's PA sends me the results. 

She has provided me with feedback the last two months (generally saying things look good considering...) and then asking for an update on how I am doing. 

I have tried to respond a few times but ultimately deleted the email. 

What should i say? That I am physically able, but emotionally a wreck. That I'm taking a new pancreatic enzyme but I can't trust the doctor or my own judgement enough to tell if it's working. That I rage out at my kids, but that testosterone treatment is not possible! 

What's there to say when the way I am is the best it's going to get and that's not good enough?

The Walk

In church today the sermon was about the difference between wishing and praying. After spending a week preparing for the service here is what I have come to conclude. 

When we wish we hope for a magical act that will change our life in a profound and substantive way. 

When we pray we invite Christ to walk with us. In doing so we change the course of our life in a profound and substantive way. 

I for one will walk with Christ. 

Tsunami

I have a new friend in Switzerland named Bengt, who also has ECD (and his own collection of odd dysfunctions that seem to come along with it). Bengt and I Co-chair one of the committees serving the ECD Global Alliance. I had the opportunity to speak to him yesterday for quite some time using Skype and it turns out he was diagnosed with the disease about the same age I was. In his case though he was the first person in his country diagnosed Erdheim Chester Disease. 

Bengt speaks what he calls Swenglish (Swedish English). He says this because he has a strong accent, an accent which many people have difficulty understanding. It just so happens though that I speak Swenglish!

My talk with Bengt reminded me how much wisdom there is within our own disease community. For example I was telling Bengt how frustrating I find the notion of harboring this beast (ECD) withing me. That it troubled me to think that at any moment it could start to grow again and there was nothing I could do about it. 

Bengt said, "This disease is like running from a Tsunami." 

The implication being that one is fine as long as they are running, but as soon as you stop the wave will get you.

I said, "It's exhausting though...running all the time."

To which he replied, "what choice do we have?"

The answer of course is run (go to the doctor, take the shots, fight the insurance company, order the pills, see the specialists, do the blood work, support research into a cure, rest) or stop and succumb to the disease as it grows unchecked. 

The answer seems obvious, right? Things become less clear though when one starts to get tired from running.

Death Fails

Letting Go

Had a great conversation today with my doctor today about the importance/insignificance of why.

I find that I am struggling to live with not knowing the reasons why. Why did I get ECD? Why is my spleen blocked? What caused my immune system to become deficient? What's wrong with my pancreas? 

He says...live with it. 

I however can remember working on old Studebakers with my Dad. Often times we would find ourselves looking for a fix before we were sure what was causing the problem. Once things were narrowed down then we were able to pinpoint the cause of the problem. 

This new pill along with my daily shot seems to have provided me relief from what ails me, but now the question arises. What's causing the problems to manifest themselves is the first place? How can I change my lifestyle to better prepare for a lifetime of living with this disease. Does any of this matter? 

To me it does. 

Miracle Drug?

Someone asked me tonight if my pills work. The fact is I just don't know for sure. I feel able to eat more food when using them but they have not completly eliminated the pain I get in my sides and. back while eating. 

Should they? I don't really know. 

Good news is my weight is up a few pounds and I am going to see the doctor in the next few days. 

Easier Said

The problem isn't that I'm impatient. The issue is I don't know where "there" is! 

I find myself wondering...is this the best I can hope for? Is the disease ever going to spread? What's going to go wrong next? 

I can be patient...but when your waiting for the next shoe to drop it starts to drive you crazy.