Exhausted

One thing about Prednisone is that it builds up in your system, so when you are tapering off of Prednisone it can take a while for your body to notice the decrease in medication. I thought I had hit the low point of this current taper mid week but things have gotten progressively worse since Friday, both physically and mentally.

I was a little muddled at work on Friday (delayed responses and such), Saturday I was very tired and responded irrationally to a fair criticism my wife had of my behavior (ended up walking home), woke up Sunday very sore and already wiped out before the day even started. Today I have a Missionary couple coming to the church, which will be nice because they are doing the Sermon. Then we have a Potluck downstairs after the service so its going to be a long day.

At this point I am hoping for a week with more energy and rationality. I am also praying that my kids will be able to understand that this current version of Dad is not the "Real Dad". It makes me sad to think that this might become the new normal if I cant get off of Prednisone. 

P.S. I don't write this Blog because I need answers, need to keep people informed, or hope in someway to become famous. I write this blog because when its written it is no longer a burden to me.

Walking Home

Worst day yet...and now I am walking home from the Miracle Mile (like that's even possible). Stupid.

Friday the ?!?!

Bad day today mentally. Felt like I was in a fog all day, at one point it took me about 10 seconds for me to realize what another teacher was saying to me. It was a hard week (especially because of the Prednisone taper) but the kids at school sure have been a pleasure to teach. High School is very different from Middle School! 

Physically my back and sides are hurting more and so are my hips. Seems to be getting worse daily, hope it levels off soon. 

Upside...went to DeeDee's Diner for Dinner. TGIF

I Hate Food!

My weight is now down to 166 lbs. from a high of 254 lbs. in May. This much weight loss might have been a problem for someone who was skinny before but at 254 pounds I was clinically obese. In fact in the beginning I was happy to be losing weight. 

However, after 8 months it has now become a problem. I think I only have 10 pounds left before I drop below my recommended BMI for my height and age.

I have spoken to the doctor about my continued weight loss and he just asked me if it had slowed, which it has. The re-reading of my MRI and CT scan by the specialist at JHU shows significant splenetic and pancreatic involvement of the ECD inflammation. This seems to me to indicate that my issues with fatty foods and starches may be a permanent issue.

At this point I am doing my best to increase my calories by eating every two hours but to be honest I am starting to hate eating. I am rarely "hungry" and have begun to see eating as a task. 

This morning I tried to eat some pineapple, cantaloupe, strawberries, and eggbeaters (I can't eat regular eggs). I was painfully full when I got done. My wife said I was trying to eat to much at which point I had a mental break and spazed out. I don't know what to do...

I hate food! I hate eating! I am depressed!  

Tired

The Prednisone taper from 10mg to 5mg has been hard so far. I have noticed a significant increase in bone pain in my hips and arms (funny thing is I am not sure if bone pain can be related to a reduction in Prednisone). I am also very tired and grumpy. I have been able to hold it together and be appropriate at work but by the time I get home I am exhausted and crazy.

Feeling....tired, dissapointed in myself, angry.

That is all.

Resilency in Life

 

This is Keegan, she is holding her eye because she just punched herself in the face while playing Wii Baseball. Now lets ignore the fact that she just punched herself in the face (because it would be wrong to tease someone while they are half blind) and instead focus in her resiliency. She had many ways she could have responded to this "crisis":

1.) She could have quit playing and demanded an ice pack
2.) She could have called a time out to check the damage to her eye.
3.) she could have fallen to the floor in a heap crying.

But no...she did none of those things. Instead she kept playing, unwilling to give up even a moment of her life to this minor injury (no permanent eye damage was done). We all should be like this when life punches us in the eye.

Prednisone Taper

Medical Update: 

WARNING!!!! I am tapering down to 5mg of Prednisone tomorrow. Possible side effects include extreme grumpiness, fatigue, and forgetfulness. 

I am excited to be weaning off of Prednisone, unfortunately it will still be two more months before I can stop (30 days at 5 mg and then 30 days at 2.5 mg). Possible problems of weaning off of Prednisone are increased pain caused by inflammation. Currently my bone and back pain (caused by ECD inflammation) are holding at tolerable levels. Please pray that they do not increase as I taper the Prednisone because I really want to get off this medicine (makes me feel nuts). Another possible side effect of weaning is that my body could fail restart its own hormone production. Only time will tell. 

Another issue of unknown origin and cause is that I have been experiencing more instances of my left leg giving way as I walk. It happened 9 times today, the most ever. Luckily I haven't fallen yet but I got close today!  Oh well...not like I've never fallen before. In fact I've been practicing since I was a kid. 

Feeling very fatigued today, let's hope a good nights sleep does the trick. 

Cup Song Crying Fit

I am finding that I am much more aware of the value of groups and the importance of people working together. I can't help but think that we spend far to much time fighting and hating each other. Perhaps more time spent together on silly projects like this one shown below could change the way we see each other.

Worth watching, made me cry uncontrollably for like 2 minutes. So that either means its a good video or the Prednisone has destroyed my ability to control my emotions.  (Thanks Nicole for sharing the video!).

God in our life

Had a great day today! It was a productive Friday at work, with full lessons and active learning happening until the bell. I am really enjoying this new group of students that I am working with at the High School, plus the grade team I have been assigned to is strong and supportive.

We had a Union election today in which I had been nominated. I lost to a wonderful woman who I have had the pleasure of hearing preach at my church. I am not upset about loosing, in fact I am slightly relieved that I didn't have to take the responsibility on. For the first time in my life I lost a popularity contest and it didn't bother me.

Why? Because I trust that God is working in my life through all things! All things (including Union elections).

Express Scripts

I have come to the conclusion recently that Express Scripts is the worst run company EVER! In their most recent act of mediocrity they have messed up my injectible drug order, insisting I use their mail order system 60 days before I was required by their own company policy to do so (then not informing me of this change in requirement until it was to late to use their mail order system).

I have since then spent 5 hours (seriously! not even joking!) on the phone trying to fix errors they made in delivery, quantity, and cost of said drug. Each time I call Express Scripts I am given the honor of speaking to someone who has no ability to help me, puts me on hold in three minute increments, and then acts suprised when I get upset.

Lessons learned...speaking in fake Chinese accent bypasses the Express Script check in process and forwards you directly to a customer service representative, saying no its not okay to put me on hold does not mean that they won't put you on hold, and Express Scripts does not respond well to being billed by their customers for time spent helping them fix their mistakes.

I Love JHU!

Just got off of the phone with Dr. Scheel at John Hopkins University, he is amazing!

Just to update you all I sent a lengthy email which outlined seven questions I wanted answered. The two most important being 1.) What is that growth on my Pancreas? 2.) What is the long term consequence of ECD on my bones?

He had his secretary call me to set up a appropriate time to call, which was nice because so many of these doctors call during work hours and expect me to be able to talk (which of course can't happen).

DawnMarie and I listened as he went through each point explaining his thoughts and his plans to address each concern that I expressed. He expressed on more then one occasion that I was not wrong in having concerns and he was happy to answer them. This was nice.

Final conclusion on Pancreas...he doesn't think that the Pancreas growth is anything other then ECD tissue (which shouldn't be an issue in the long run), but he is going to have one of the specialists at JHU take a look. He then said this Dr. who was going to review the films invented the CT scan so if he says its all clear then you don't have anything to worry about. The funny thing is he might actually be serious when he says this guy invented the CT Scan, with the specialists at JHU you never know.

Final conclusion on consequences of ECD on my bones...if the treatment works he believes I will eventually be relieved of all pain and that all issues will resolve themselves. I find this optimistic viewpoint a little hard to believe considering just 2 years ago ECD patients had a estimated survival rate of just 5 years.

But perhaps it will grow on me. Who knows, maybe the glass is actually half full.

As usual only time will tell what God has in store for our family. 

Feeling Respected

Arrogance is an amazing character trait isn’t it! I have recently had the pleasure of spending some time with a few people who insist they are always correct, more intelligent, and generally superior then the others around them. In the past I might have found this offensive but with a little introspection I can see how I have exhibited these same characteristics myself in the past, therefore how could I be offended?

In fact I now find arrogance humorous. What’s interesting is that the smartest people I know are never arrogant. Whether its my fellow math teacher who has an amazingly complete understanding of measure theory, my Doctor at John Hopkins University who is one of the top specialists in his field, or one of my Church members who sees EVERYTHING from a spiritual point of view…they all default to a diminutive or measured pause when I speak to them.

There is something comforting about their doing this. I feel respected when they pause before responding because it acknowledges there is value in my question (its not just a stupid thought not worth their time).

I hope as I continue to grow I find more ways to show people I respect them with my actions, not just my words.

"Caught" sitting

With one full week of work (teaching) under my belt it looks like I will be able to keep doing my job. Before school started I was worried that my body might not be able to handle it, plus my voice was struggling to recover from being intubated in June. While there has been a significant increase in my bone pain as compared to this summer and my voice was a little sore it was not as bad as I expected.

One thing does bother me though...getting "caught" sitting. I have explained to my boss that I need to sit down while I am teaching and she has been very understanding, even going so far as to check in with me to make sure I have everything I need. As a teacher though it feels wrong to sit! I feel like I should be constantly circling the room, like a shark (a nice shark). So even though 70 percent of the time I'm up and moving I have been "caught" sitting twice and I find it embarrassing.

I think what bothers me most is that my sitting is proof I'm not 100 percent and I don't like the implication of weakness that comes with that admission. Ironically my weakness has made me rely more heavily on small groups, forced me to integrate projects more regularly, and made me more responsive to individual students needs.

So perhaps in my weakness there is strength, or at least a unique opportunity to improve my craft as a teacher, but I still hate getting "Caught" sitting.