Lack of Narcotics and Insomnia

After two and a half hours of sleep, I'm now awake and trying to cope with severe joint and skin pain. Thanks to a lack of pain medication, I've been without anything but Tylenol for the past eight hours. I was sent home with about half the amount of pain medication that I took at the hospital. Despite severe rationing and sucking up a lot of these nasty side effects, I ran out rather quickly. However, I would still rather be here with my wife and enjoying some privacy rather than spend another minute inpatient. Yet, if the VA doesn't prescribe an adequate amount of pain relief, I have been researching alternatives and may take matters into my own hands.

I firmly believe that one must never abuse narcotics. Once my pain subsides, I am very diligent about ceasing medication in order to prevent addiction and ensure efficacy. What I mean by the latter is that if you continue to take the pain medication when it is not necessary, you will then become reliant on higher doses when the medication is necessary. Later, when you need the meds again (and there always seems to be a later with leukemia), that initial dose will not be efficacious. Now you are not only begging the VA for a "controlled substance," but you are asking for a higher dose--good luck! Narcotics also have poor long term effects and they warp the mind. Because I want to resume my studies and a normal life, getting off all meds ASAP is best. That being said, there is a time when you need the narcotics and for me that time is now. I pray for just one day where I'm not in pain. It seems that since the beginning of May I have not met with such a day, and I do not anticipate such a day until my immunosuppressants are drastically reduced.

During this period of insomnia, I researched GVHD and realized that I should consider myself somewhat fortunate. There are no signs that my GVHD has spread to other organs such as my kidney or lungs. If it did, the result is lethal and at the very least leads to severe morbidity.

I also learned the difference between morbidity and mortality. Many articles seem to conflate the two, but morbidity deals with a diseased state or poor health rather than death. They are easy terms to confuse because morbidity can indirectly cause mortality. In other words, my skin GVHD has a low mortality rate, but a high morbidity rate. It can indirectly lead to death through a series of infections. As my oncologist said, I could be fine one day, have a cold the next, and die from pneumonia within a week. All the while physicians look on helplessly because I have nothing to fight off the attack. That's a sobering thought.

But through this all, I place my faith in God, I follow the doctor's advice and know that I'm with a phenomenal team of physicians, and I have loved ones surrounding me and praying for me. Life is more clearly defined, and should I overcome the hurdle of this first 100 days, I dare say that I'll be a much stronger person mentally and spiritually. Although I might never be where I was physically, I do find some freedom there.

Growing up as a fat kid, I did everything I could to lose weight. Although I was never obsessed with weight loss, it was always in the back of my mind. Now, all my muscle is gone, the steroids have me retaining fluid and other weight; such that I look completely bizarre, and the skin GVHD causes people to treat me like a leper. For the first time in my life, I just don't care about physical features, and I find the new mentality so liberating. I only wish that I could taste the food that I'm supposed to be eating. 

Of course I will still exercise and I did an hour on the elliptical today while roid raging. However, I will exercise for my health and wellbeing rather than vanity's sake. I also believe that exercise will help promote my overall recovery.