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.