05 March 2011 - by ~ 0 Comments

The Pain Truth

Unless one has been living in huge force field that allows us to move about the world pain free (that is a wonderful concept) at some point in time you have suffered from pain. I have been one of those people for quite some time that did not experience a lot of pain in my life even with having DMD. Oh how the life was when I had little to no pain; ah those were the good old days. If I can wave goodbye I’d be waving a somber goodbye to those days.

I did not start experiencing a lot of pain until about a year ago when I turn 34 years of age and earned my right to be called a DMD Pioneer. I used to be able to call these pains growing pains of Muscular Dystrophy, in fact I even used to boast about the pain. I figured hey I am 34 years old and managed to kick this thing in the face. “Ha ha I am king of the bad boys and I am not afraid of any pain, bring it on!”

I began having pain issues in my left hip last fall; I took a little Tylenol and figured that the pain would go away in the matter of hours. Then I started having pain in my lower back so I thought okay no problem with the pain in my hip has decided to move a little higher so this time I would take Ibuprofen instead of Tylenol and that would do the trick. Then the back pain moved into my shoulders and neck and has decided to take up residence there. So that was when we got out the big guns and I was prescribed Lortab which was very quickly at taking care of the pain. The pain was all gone and I figured that I was set from then on.

It was the following winter when I became familiar with real pain. My muscles begin to stiffen and my body has felt like a petrified piece of lumber left out in the elements to spend the rest of its days. I am very thankful to be living this long with this disease, but I was not ready for the pain that is involved. I have heard that some of my friends living with this monster do not have a lot of pain however some have been riddled with pain. So I began having pain that would not last long but recently I have been dealt with a hand of chronic pain. My pain has left me in agony over the last eight weeks. Last week I was almost at my breaking point and totally was consumed with depression, anger, a terrible attitude, and I just was at my wits end. I thought that God had it in for me and caused the pain. In my heart I knew that God did not do this and that he was showing me that I was stronger than it seemed. The Bible says “many of the afflictions of the righteous, but the Lord shall deliver them all.”

Following last week, I began heavily reading my Bible and praying to God that he would end my suffering. I kept on fighting the urge to stay in bed and give up; it took everything in me to let my nurses dress me, I was not going to let this pain get me down. I have fought this long and to let this make me give up would make it all in vain. So the better part of last week seemed like boot camp and that is putting it lightly. I fought through the pain and I just could not beat it this time, I had to surrender and give in to the pain.

So I was stuck between given up and continuing the fight. I had a decision to make at that point, either I let the pain eat away at me and consume me or I stop being dependent on myself to fight this fight. I prayed about this situation and meditated for several days and the answer hit me. I no longer could get any relief from any other drugs; it was time for the big ones like Morphine, OxyContin, Methadone, or Fentanyl which are hardcore Analgesics. My doctor suggested that I should start wearing a Fentanyl patch which would take care of the pain. Of course I did not want to begin taken such a powerful drug for fear that it would leave me in a fog or I would end up so drugged that I would not be able to continue with school, ministering, or keeping up with my blogs in which I so love.

It took several days of fighting with the insurance company to approve payment for this Fentanyl patch. There I was in serious pain and Medicaid was denying the purchase of it saying that they do not understand the medical reasoning for an expensive drug like this. It is very unfortunate that the people in charge of the pharmaceutical department at Medicaid do not have any medical knowledge of the pain that DMD causes. This pain was very serious and very much like that of one suffering from cancer, I mean Duchenne Muscular Dystrophy is chronic and it is terminal in my case much more so now that I am an old man with the disease. Not to mention that this pain is very hard on every organ especially my heart which is in no condition to with stand the stress of this pain. For two days Medicaid denied me getting this and I was so ready to give up but I knew that I would not do this and that Medicaid needs to not allow others to go through hell to get the things that they need. We called my doctor several times, the pharmacy several times, and the company that handles Medicaid pharmaceuticals. The doctor said it wasn’t in his hands anymore, the two pharmacies kept given us around of crap, and the Medicaid pharmaceutical company actually approved the medication. It was the pharmacies that were unwilling to contact Medicaid by one simple phone call to get an override for the medication. It was that simple yet everyone failed as far as I’m concerned. The only one that suffered from this whole quagmire of medical bureaucratic red tape was yours truly.

Finally, we received a call from the pharmacy saying that it was paid for. Hallelujah! We got home from the pharmacy because I had to go and show them my ID to verify that I was indeed Christopher M. Keen. The very moment I got home Jennifer put me in bed and slept that bad boy on my right shoulder; I was very apprehensive about how my body would react to the powerful medication. Needless to say I was worried for no reason. I watched TV for a little while and then I was out like a light, down for the count, TKO. For the first time in months, I actually had a wonderful night’s sleep; Robin told me that when I was asleep my oxygen saturation was at 99 and my heart rate in the upper 60s which indicated that I was resting very well. Much to my delight I am not fatigued in the least and in fact I’ve had more energy today because the pain is slowly dissipating.