Well the answers still come, "Yes, Yes, and you have a beautiful wife and seven kids you need to provide for, so it is worth the bother."
So I struggle out of bed, get ready for work, take my morning pills, and go. For a while, one of the cars was broken down, so Austin would drive me out to work and pick me up. It was a great week. We got to talk about music, girls and the struggles of a teen going through angst, God, church, and about me and this disease. We try to dance around it, but it is hard to do when it has invaded every aspect of our lives. AJ has really been smacked upside the head by this. I know he stuggles to see me fight to provide and just be a Dad. But you know what, he makes me want to get up.
Joe (Nathaniel) has finally learned I am not going away and he is stuck with me. As he runs around the house babbling smacking his sisters around and being very good at being 2 yesterday (1/28/2014) he shoved an pencil eraser up his nose and it was stuck. Dana was able to retreive it, but before you can clean up one mess, he has made three. He and I will lay on the bed, him in the crook of my right arm, he sticks his hands behind is head, crosses his legs and watches TV with me until he goes to sleep. He hugs me when I come home, and is quite the tease, I have officially become "Da" now.
The other kids (Colten, Morgan, Grace, Lilly and Gillian (DeeDee)) are adapting to a "new" Dad and making adjustments as necessary. Who is the "new" Dad, well, it's me.
For those of you who have known me, I loved to go to parties, teach college classes, and be out there, joking around, life of the party, etc. Now, not at all. I prefer to hang back, let others to the talking and stare at the floor. To many seizures, facial tics, and stuttering to risk it any more. At times I was shaking so bad it looked like I had parkinson's disease. The pills I was on stoned me, or made me suicidal, or put me to sleep. The experiments with doses and hoping the side effects of a pill will help only to have worse side effects, the night terror's, the pain pill addiction, the hallucinations on the Ketamine, the nights of no sleep (sometimes 2-3 nights in a row), the forgetting of names, people, important dates: Stopping mid-sentence to grapple with finding the word I wanted to use, having to take six months off work, watching as people stare hopelessly at you wanting to help but not knowing what to do. All of it takes a toll on me, physically, mentally, spiritually and emotionally. Oh, and throw on the financial strain of a wife quitting her job to care for you full time and a stack of medical bills that grows each day and it crushes me more and more.
I have found a good Pain Doctor (any if any of you are reading this because of CRPS, this is MOST CRITICAL!!!), who has managed my drugs and I now get nerve blocks in my leg to shut it down for a while, but it always comes. When the blocks fail to work, I am looking at either a pain pump or spinal cord stimulator--permanent intrusions into my body that carry risks all of their own. I have a team of experts at the U of U including Neurologists, Pain Specialists, Physical Therapists, and Psychologists.
Believe it or not, one of the "side effects" of constant pain is anxiety and depression. They all seem to go hand in hand. Lucky for me (if there is any sort of luck in this at all) I have a warning system when the anxiety builds, it's called a cluster migrain. It will start with silver stars streaking around, then move to silver auras, then SLAM!!!!!! Intense pain in the left temple, tender to the touch, light sensative, the works. This is the first clue my anxiety volcano is about to erupt. If I can't stop the migraines, then my body needs to get rid of the excess anxiety pressure so I go into a non-epileptic seizure on the left side of my body. My record is two hours until I finally was given a sedative to knock me out, and I spent hours in the emergency room with seizure after seizure. Once the seizures come, the CRPS comes roaring back. My leg startes flaring after the first migraine, once this happens it is a downward spiral that is hard to get out of. Migraine, CRPS, Anxiety, Seizure, Depression, Stress and round and round it goes deeper and deeper down the rabbit hole. I fear one day I may not be able to get out. So far we have been able to break it by attacking the migraines and using nerve blocks to shut down the CRPS, but I fear, each time is wears more of me away,especially mentally. I truly feel that one day I might not be able to break the cycle and drastic measures will be taken to stop the maddness, ie spinal cord stimulator or pain pump, or worse...
Hey for fun look up the drug ziconotide, that is something for me to look forward to isn't it? The side effects are just wonderful!
I have been asked to describe the pain. Well the only way to describe it is like sticking your leg over a roaring hot fire and not moving it, and having the lightest touch of a feather feel like a welding torch across your knee, and the pain never lets up--ever. If you have time look up the Mcgill Pain SScale, my pain on this scale is called causaliga, and unlike other types of pain, this is constant. Pain meds don't work to dull the pain, only dull my brain, because the sympathetic system is transmitting pain (and it isn't supposed to).
At times I get angry, so mad about this. Why? Why do I have to suffer so much? Why am I made to go through so much pain and misery? I suppose there is a greater purpose or a lesson to learn, but I think it would help if I knew what it was. It breaks my heart to hear my seven year old (Lilly) sobbing on her bed because she wants a regular family and a fixed Daddy. It is hard when DeeDee comes up and asked is she can sit in my lap because the monster in my leg is asleep. It is hard for my kids and wife to not hug or hold me without asking about my knee. It is hard to see the panic rise in Dana everytime I get a pain or get hurt "How's you knee," I am asked, seems like second nature now. It kills me, I should be the provider and protector, not the provided for and protected.
We are lucky and do have neighbors that help by taking the kids, providing meals, etc. but I don't even talk to them much, I don't go to church much crowds make me nervous now. So what's the answer, how do I make this post a little more upbeat. Well, the kids are healthy, Dana is holding together the best she can as she watches the person she married seem to slip away, and I can still work for now, but I am afraid there is no way to make this happy. I do feel blessed I have a wife that is strong willed enough to fight with me, kids that are tough enough to live through this, but as I keep saying, you can't walk through hell without some of it sticking to you.
I will end with a positive note. I want to thank each and every one of you that have prayed for me and my family. Believe it or not, through all of this, I do think this is a big contributor to my survival and my family's adaptation. Please, keep the emails coming, not just for me, but for Dana and the kids. Thanks to those family members who reached out in our time of need. Lastly I will say that I will thank Jesus for the atonement. He not only suffered for our sins, but for all our pains, so I turn to him in my deepest pains.
Thanks all, I expect to keep this updated more often.
John
