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. 

Meanwhile...

So it turns out the denial of Creon by Express Scripts might simply be a simple volume issue (it is possible that they limit all in person drug requests at the pharmacy to 100 pills). The denial may have happened for any drug ordered at any volume higher then 100 pills. I learned this with just five minutes of DanMarie looking into the issue (once again DawnMarie saves the day). 

Meanwhile the Gastroenterologist's office spent 2 hours on this today and made no headway on the issue at all. The real complicating factor is that the phone support doesn't understand the plan either. They are actually a call center for many plans and therefore never developed an expertise in understanding your plan.

 What makes this whole thing even more frustrating is that my secondary insurance and drug coverage are both easier to use then my primary!!!!

I appreciate all your thoughts, prayers, and suggestions. I want you to know that I am not worried about getting my prescription filled in the long run. Until then I filled a 200+ pill disbursement through my secondary prescription drug provider. This is not ideal in the long run though because the copayment would be $300 for a 90 day supply, instead of $45. 

If I have to though...I will do what I have to. Until then, guess whose spending lunch on the phone with the insurance company tomorrow.

Testosterone

I mentioned last week that I had a discussion with my Doctor about a medical issue and I was pondering the results. Here is the issue, my testosterone is low. I had no reason to know this other then it showed up on some of the testing that was done at the NIH.

Since finding this out I now realize that the moodiness, forgetfulness, fatigue, and loss of muscle mass that I have been experiencing could be related to my low testosterone. I have spent my whole life thinking that if you had low testosterone it meant you had erectile issues, but it turns out that in many cases that's not true.

Good News - They make shots, creams, and patches that will provide one with the testosterone they need.

Bad News - I can't take any of them because they increase the risk of clotting. My Doctor said, "no Doctor in their right mind would give someone with your health issues testosterone replacement therapy". It turns out the treatment might very well finish of my already damaged spleen.

Oh well. For Now.

Great Partner

DawnMarie spent the weekend helping me compile the information I needed to go to battle with the insurance company on Monday. When she was done with that she thoroughly research Creon^TM. One funny thing we have found during this last year is that we are regularly prescribed pills, capsules, shots, etc. with no real explanation on how to use them.

Some of these things like my pain medication TraMADol^TM is easy to figure out. There is a max amount allowed in one day and you can take up to that amount until the pain goes away.

For my Kineret^TM prescription I had to look up on google how to gicve myself an injection. I was given no classes, no instructions, in fact no guidance of any kind.

Now with Creon^TM it turns out the drug has very specific guideline for use. My doctor said take two pills every time I eat. However, DawnMarie read up on it and I don’t need to take any pills if eating foods with no fat (which I do a lot). In fact some times I will only need to take one pill. I know this because of my wife. The fact is I haven’t had a chance to do any research on this medication even though I have been using the sample I was given for the last 3 days.

Two things. First this lack of guidance and education is a problem and we must demand as patients better instruction and care from our health care providers. I for one would love to have a managing nurse assigned to me, one whose job was to manage my health not my cost to the insurance company. Second, my wife is awesome. I’m pretty sure I would be dead now if it weren’t for her.

If your doubting her awesomeness, here is a picture of her hugging our son while we are praying in Sunday School (yes my eyes were open). Life saving, praying, son hugging, sounds like she's on her way to sainthood.

Battle Delayed

My battle with the insurance company will have to wait until Monday. They don’t deal with “problems” on the weekend. Here is what I find annoying; they are going to give me the drug I need. They are going to, after hours on the phone, followed by hours of my doctor’s staff being on the phone give me the drug I need at the prescribed level that I need. I know this because they always cave after I push hard enough.


Here is the issue. It is wrong to make sick people fight to get the drugs that their doctors prescribe them. It is wrong and costly to make my medical provider fight for the drug that in his best judgment will heal me. Is it ridiculous that these drugs cost so much? Of course it is, but that is a policy problem not a patient problem. 


I think that what bothers me the most is the knowledge that these corporate fat cats probably harass a few people every day (perhaps a lot more) into giving up. I get angry not because their pushing me around, but because I know their pulling this same stunt with people who can’t defend themselves. Through their greed they cause people to die needlessly.



One Last thought on a different topic. Today I stopped by the church to work. When it was time to go home I told Bradley to pack up and he said, "I don't want to go home because people interrupt my playing to much". It's true, we do interrupt his playing a lot. I wish everyone felt as good about being at church as my son does.

Let The Battle Begin!

I went to see the gastroenterologist who first realized there was something clinically wrong with me a year ago. Today we met to discuss the NIH's test that indicated I am not processing the fats in the food I eat (this results in pain when eating and difficulty gaining weight). So it turns out that all those doctors that kept telling me to ignore my pancrease and my early diagnosis of pancreatitis were wrong.

Dr. Kaushik says there are two reasons for wasting. 1) Not enough of the right chemicals being produced by your pancrease to properly digest the food it takes in. 2) Your body not absorbing what's there, which is hard to fix and not indicated by my labs. 

The first option can be easily addressed with a drug called Creon™. I would need to take one-two pills every time I eat foods with fat in them. 

That's it!!! Just these two pills, no major side effects,the drugs not worse then the disease. I can eat normal again. I know this because three hours ago I ate this.

Fish and Chips! Amazing!!! I only ate half, I'm not fool hearty. Guess what? No pain yet. 

To good to be true right? Right?

It can't be that simple Right?

Insurance won't cover the drug?!?! Say it costs to much at $3,000 a month. They will only authorize 1/4 the amount of the drug I need. 

Let the battle begin!!!

Just Doing

Spent the day resting and pondering the results of some of my lab results from my visit to the doctor yesterday. 

Good news is that the last set of blood related tests came back, all negative. Which means I don't have any new rare clot producing, plasma eating, or cell deforming disorders. I now have an appointment to see the chief of the immunology group at a local hospital. The appointments is not until late May and I will probably feel like going by then. 

Tomorrow I have to check back in with my doctor and get approval to get back to work [There is one thing that he talked to me about that I will share with you all later. I just need some time to comprehend my options before opening it all up.]

After that I am going to see the Gastroenterologist who first found something wrong with me during a endoscopic ultrasound a year ago. 

Ohhhh if I knew then what I know now!!! He is in for a surprise if he remembers me as a passive patient with just a few questions and even less knowledge. 

One year later I am a passionate advocate for myself. One year later I ask hard questions that demand well reasoned answers. One year later I know for sure that he is there to see ME. There I go getting all worked up, you see last year I wasn't assertive and he didn't provide me the level of care I wanted. That will not happen this time. 

My moment of zen today was this...

...just sitting on the floor (in my pj's) eating oatmeal from a mug. There is just something about the warmth from the mug and the sound the spoon makes as you eat from it that is very calming.

Have a calm night everyone, and may your day tomorrow be blessed!

Not Doing Well

Started the day of with uncontrollable shaking and things went down hill from there. One of my coworkers bullied (not really bullied but forcefully suggested) me into going home. 

She might have been disturbed by the fact that I was delirious, the room temp was 80 degrees, I was wearing a coat and hat, I was very pale. I probably would have tried to finish the day but I didn't have the energy to argue. 

Plus I think it's possible that Ms. Ahmed, Ms. Downes, and my wife were right and I needed to go see my primary care physician (PCP). Have you ever noticed how women tend to be right in the long run? Super annoying! 

Went to the Dr. and I am strep free but have a fever, aching body, upset stomach. 

So I'm laying in bed sweating it out. 

On a side note, I have an awesome PCP. He used my visit to treat me then he called and made an appointment for me at a doctor I have been unable to get to respond to my calls. He then went through a bunch of lab work with me but more on that later. 

Now I sleep. 

Doing Well

I have been worried for some time about what's going to happen when I get sick. So far on my third day of being sick things are looking pretty good. I would say that what I'm experiencing right now is just your typical run-of-the-mill "healthy" persons flu.

I am pacing myself and making sure that I'm eating super healthy. Everyone has been very supportive and so far it looks like I  going to come through this winter bug realativly unscathed (except for a pound or two). 

No point pushing it though, heading to bed early tonight. I do need my beauty sleep after all (he said super sarcastically). But seriously, I have found this year that for me living with ECD is about learning my limits and respecting them. 

Accepting that I have limits...super difficult!

Sick as a dog

I am in the middle of being sick. Yesterday I woke up with a sore throat and an sore body. After church I went home and rested ( resting being defined as sleeping in ten minutes segments before being woken up by Bradley and Keegan ). 

This is my first time being sick since being diagnosed with ECD and I am worried because my immunity levels are VERY low. In fact I just got new labs back today. 

As you can see I have a bunch of blood levels that are out of range. So the key for me this week is to eat healthy (already doing), get plenty of sleep, and pace myself. Pacing myself will be tough but I think I can do it, he said not really believing it. 

Hoping this thing I caught passes soon. If you can pray for me this week. I am going to see a doctor about my wasting and I am expecting some blood work back that will guide my testosterone treatment. 

Saturday Meltdown

I love patterns. I get up at the same time every day, make myself the same thing for breakfast, and pack largely the same snacks for the day. I am okay with this. It makes me feel like I am in control. 

The only thing is that weekends are much more unpredictable. Today for instance I had to do a fasting blood draw. The lab opened at 7 and due to some maddening hold ups leaving the house I did not get there until 7:05.

Now you might be thinking, "Not Bad." If you are I can tell you have never been to the lab just after it opens. In those five minutes your wait time can increase by an hour (mine did, #17 on the list). This, added to a ten tube blood draw really put me on edge. 

I went home storming mad/crazy but was able to reign it in after a while (there is definitely something off with me hormonoly but some if these test are trying to pin the problem down). 

What I wanted to do was spend the day relaxing and getting ready for Sunday. Unfortunately, I allowed myself to be pulled back out for a nonessential event that has made me miss two meals (I eat ever two hours) and will get me home late. 

I say I allowed, because I said no initially but eventually caved. The thing is I know what's best for me. I needed a light day with lots of sleep. I have to stop bending to the will of others and listen to myself. 

You know what bothers me the most...how whiny and b****y I sound/feel. This is not ME!

[Update: Left the event half way through and took a nap in the car.]

Lent

In the season of Lent it is traditional to give something up. In doing so we attempt to acknowledge through our sacrifice the ultimate sacrifice of Christ, his life for our own. Yet it occurs to me that in life we already give so much up. 

We give up time with our family for monetary gain. We trade time with our spouse for time spent in the car on "taxi" duty. We mindlessly trade time in front of the television instead of talking with each other. 

The truth is our debt has been paid and no token withholding of television, soda, or chocolate (my kids favorite things to give up for Lent) can ever give the Lord the honor he deserves. 

So, instead of giving something up this year for Lent how about you take something back.

Take back your family, spend time with them. Take back your neighborhood, invite the neighbors over for dessert. Take back your soul, spend some time in his Word. 

Stop giving up and take back up your relationship with God.

Ash Wednesday

I hosted the first of seven Ash Wednesday soup suppers tonight. DawnMarie made a great vegetarian chile and a friend brought some homemade cornbread. My expectations for the night were low, so low in fact I had settled on the notion earlier in the day that I would be happy if 8 people came. Turns out there were 20 people in attendance! We had a wonderful meal then watched a shirt Lenten devotional.

I did most of the setup and I let everyone else do the clean up. In the past I would have insisted I be involved in every step of the process, as if I could prove my worth through working hard. I realize now that many hands make light work for all and that by accepting others help I give others the opportunity to serve and myself the chance to recharge. To bad it took me 37 years to learn this lesson. 

Life is a journey...

Answers

I received a very lengthy report in the mail today from the NIH with the clinical results from my visit there last month. While the sheer volume of information being presented in this report is overwhelming, I am glad I have it.

Information is power and when I finally get done googling all the terms I'm seeing that I don't understand I will surely know more then I know now. The nice thing is the report is broken down by medical specialty with practical suggestions on what I should do next. It even suggests the chance of each possible cause/outcome. 

Right now I am taking a vacation from seeing doctors. Next week though I will start scheduling appointments (don't be jealous but I think I have a upper and lower oscopy in my future). Just going to have to take it slow. 

Serenity

The calm after the evenings snow is always something that I enjoy. There is something about sheets of brilliant white unadulterated by footprints and tire tracks that reminds me of how close We are to the universe and God (no I have not been drinking). 

Today's mild brush with Mother Nature reminded me that we must embrace serenity in the odd moments where we find it. The truth is we just don't know when the next moment will come along. So it's no wonder when we find ourselves rushing rushing rushing from one thing to the next that we soon find ourselves feeling harried and exhausted.

The fact is life is hard but if we stand any chance of making it from this day to the next we must take those moments of serenity that exists around us and embrace them with everything we have when they happen. 

So next time you see that crescent moon or hear the beautiful silence of a dew touched morning, put down that trash bag, groceries, or your work readied bags and enjoy it for a moment. 

Sunday Funday

Sundays are the most difficult days for me because they are long and physically demanding. I try to arrive at the church by 7am so that I can have some time to tweak my sermon and center myself prior to people arriving. 

After Sunday school I preach, which always leaves me a little sore?!? Then after the service there is always something to do. Today's communion service for instance was followed by a visit to the churches accountant and a quick stop at the hospital to see a parishioner. 

It's fun though because I get to lead worship, which I love. I get to meet, greet, and make people feel welcomed. This Sunday I got to see the choir lose themselves in practice (they are an amazing group). 

The best part about today though (after preaching) was talking with Gerald Boehlke, a visiting missionary from Africa.  He asked me how I was and then actually listened when I told him. He didn't try to fix me or offer up any suggestions, he just listened. 

And now as I get ready for bed I fell both physically and emotionally drained. That's okay though because it sure was a fun day.