Two steps forward, one and a half steps back

Well another two seizures again. The first happened when I was asleep. I had a dream I was working on a deck at my grandpa's house and I fell off landing on my left side. The pain in my head was excruciating and the whole left side of my body was jerking around. I snapped awake to find myself in a full on seizure (or whatever it is) violently shaking my left side. Gillian happened to come into the room and saw me and asked if I was okay. I was able to stammer out, "Go get Mom" to which Gillian replied "Are you going to throw up?". I managed to stammer out a yes and Dana came in and saw me in full seizure. She broke up a Valium and got it down me and twenty minutes later I had calmed down again. For the next two days (Saturday and Sunday) my neck was sore and my left leg weak from all the shaking. I don't know how long I was asleep when I started seizing, but it sure knocked me for a loop. Then, Sunday night I started again but we were able to catch it before it went into a full blown seizure, but again, I was so tired and upset. It is scary being trapped in a body that you have no control of. Another small miracle, we have been praying that I could get in to the neurological center at U of U before the 4 to 6 month wait time we were told. We got a call and I am going in on the 27th of September to get a brain scan. For the last couple of months, I will get a piercing pain in my left temple that will radiate throughout my brain and it feels like it is being squeezed. The last two seizures I had started off with this jabbing pain, so my doctors want me to get a brain scan to make sure nothing is messed up with my noggin. I'll let everyone know how it works out. Dana has been so busy putting in the yard this year. The nicks and cuts on her hands show the battle she has fought putting in trees, bushes and plants to help make the yard look better. I try and struggle pulling weeds in the garden, but if the kids didn't help, we would be canning weeds this year. We planted tomatillo plants three years ago and they keep coming up on their own, so I am hoping to can some green chili this year. We also have some rogue squash that showed up in the garden as well an some potatoes that just sprouted. I will never complain about the extra food, I just hope I have the energy to put it up this year. We continue to struggle to find the right cocktail of drugs that will help with the CRPS, so with each shift in drugs I go through another set of fights with different side effects and I keep struggling to sleep. All I want is 4 hours of sleep without having to resort to drugs. Just once I would like to wake up feeling refreshed instead of drug behind horses for 4-5 hours a night. I have been to the U of U pain clinic four times now and they are helping and it seems like I have direction now, but every time we change something up, it is like two steps forward and one and a half back. It is progress, but it is slow and the the roller coaster ride sure takes a mental toll and me and the family. We keep praying and hoping to find the right mix to put this into remission, until then, I guess I keep moving forward the best I can. John

A little light at the end of the tunnel?

Last week was rough. It started with a "seizure" again on Sunday and another week off work. I was able to get back to the pain doctor on Wednesday, and with a call from him, I was able to get into the Pain Intervention Clinic at U of U to see both a Physical Therapist and a Psychologist that have extensive knowledge of CRPS. I met with them on Thursday and we are now formulating a plan to try and put this beast to sleep. My primary care physician is concerned about the seizures and gave me a referral to a Neurologist to scan my noggin and make sure that there is nothing wrong. My pain doctor thinks the seizures are from the Ketamine, but we just want to be sure. So I hope the light at the end of the tunnel is in fact the other side and not another train baring down on us. I also learned during this time that the clinic I had gone to, was not treating me the way they should. So now I wonder why I had to suffer for so long, and have to come to grips with the fact that the trust I had in them to help me was not in my best interest. I mean, it is good to know that my new doctor is Certified Pain Management and is now getting me on the right path, but why was I made to suffer and twist in the wind? I will get over it, but I wonder what could I possible stand to learn suffering so much? Of course, time will tell and hind sight is 20/20, but until then, it is something else to get over. I am still not sleeping well. I am lucky to get 3-4 hours a night and I sleep in 30-45 minute increments with periods of waking in between. I am still suffering weird flashbacks to the Ketamine and suffering from the worst nightmares and dreams which wake me up--often times in a panic! That wears you down quick and lets the depression and pain back faster. It is interesting to note, that there is a tight coupling between the depression and the pain. When the depression or anger rises, I can start to feel the snake coil around my leg and the burning coming back. So I am trying to let some things go that used to upset me and use the little energy I have to fight. SERENITY NOW! I will say, however, that there have been small blessing and miracles along the way that we have "discovered", and direct fulfillment of the blessings I was promised when I got my blessing. I keep looking for the small miracles, which I think we often overlook trying to find that one big miracle we think is coming. It is rare the "rise and walk" miracles happen. Sure we read about them, and they do boost our faith, but often we are looking for our big miracle and miss the small ones that happen every day around us. We are told that our trials are for our good, and it is very, very difficult to see any "good" coming from a Chronic disease without a cure, but I'm sure there is one and one day I will look back and find it. But today, I look for another small miracle, pause and say thanks in a prayer. Often the "miracle" may be nothing more than a day without pain, other times, it is being guided to a doctor who knows and cares. Keep looking, I know I will and soon the small miracles will add up to one large miracle we lived all along. Until then end of the challenge, I thank God everyday for the will to fight, my family, and my life.

Recent Events

Just when there is hope you get knocked back some. Yesterday (7/15/2012) right after church I had another seizure. It wasn't as out of control as the others I have had, but it was still pretty large. The only thing we have to stop them is Valium, and that puts me out for a while. I don't know if it is the change in medicine or if there is something more sinister happening, all I know right now, it is scary for both me and the family. Up until that time, I thought I was making a little progress. I am now at physical therapy and I make a game with the kids to help me do my exercises, that way I can be with the kids and get the exercises done at the same time. Now I am trying to find a therapist to help handle the mental aspect of this beast. I have found the best way to answer the question, "Are you feeling better?" is to tell people that it is asleep. I am never "better" per se, but it is asleep meaning I have no pain right now. It is the 900lb gorilla in the room that if you irritate it to much, will wake up and start to destroy things again. So now we play the game of trying to keep it asleep. That takes a lot of mental energy to do, it's like tip toeing around someone who may explode at any time, and that is where the therapist can help. I claim I am a changed person. Dana thinks I will return, but I don't have that much confidence. I have learned you can walk through Heaven and Hell and not have some stick to you. My first ketamine infusion was more of a spiritual awakening for me. I experienced things during those three days that were amazing. The second infusion was exactly the opposite. Both have affected me in very profound ways. My brain is still trying to sort out what what is "saw". I find if I am not concentrating, I have flashbacks and they are as vivid as ever. They will go away in time, but until then I have to keep occupied. I am more reserved now than I was before and I am move "level" as well. It may be the drugs, but I also think that because I have to spend so much time fighting, that I have learned to just drop the baggage I used to carry around that I thought was so important, and focus on getting better. I have a new pain doctor now. He is more of an expert in CRPS and has given us more options. This was a direct answer to me blessing. We have more hope now of controlling this beast with the right doctor. We feel your prayers and thank you for them. I will continue to update as I can. John

At the Crossroads

I was talking to my brother the other day and during the conversation, I told him that there are a few times in your life when you are faced with a decision big enough to change the course of your life and you know your decision will affect your life. For example, who to marry. This will have a big impact on your life, you will be with this person night and day for the rest of your life (at least that is the hope). During this time you find that there are little things your spouse did that were "cute" while dating, are now so annoying that you want to hit them in the head and say "Stop doing that!". But you love this person and accept the challenges as well as the joys of living a life together. In March, I faced one of these life changing decisions. I was standing on a high cliff, below was the roaring sea and jagged rocks and my toes were right on the edge. One more step and over I would go, free fall for a few seconds then BAM! end the pain. Or, I could back away from the cliff, continue to endure this never ending pain and try to tough it out. Let me back up a little to explain how I got there. After the birth of Joe, I hit the lowest point in my life. I was present at his birth, but not excited, in fact when he was born I couldn't care less. I cried at the birth of all my children, it was relief that they were okay, that Dana was fine and meeting a long lost friend. But with Nathaniel, it was different. The week before, I had my last Sympathetic Lumbar Block to try and stop the pain long enough to at least participate in the birth. It didn't work, and so any joy or excitement I may feel, was crushed by the pain. I was there physically but not mentally. I still carry the guilt I feel today for not being there for Joe and Dana. By mid march, the pain was so intense that I lay in bed, under heavy drugs contemplating the best way to get out of the game. When you are in constant pain, it takes over your whole life to the point of sucking out any bits of happiness you feel. It is mentally and spiritually breaking and exhausting to fight every second of every day. So I edged up to the cliff and stood there, one step forward the pain would be gone and I could get relief, one step back, I would fight the pain every second of every day and try to continue. Sounds like an easy decision, stay for Dana and the kids. Well, to be honest, it was not easy. Taking the step from the cliff was so much more appealing because it was a guaranteed way to escape the pain. I took steps to prepare to ensure Dana and the Kids would be taken care of financially and even planned my funeral to take that stress away. I had even started to write to each of my children some thoughts to help them through life and how to help their Mom get through the brief period of mourning and move on once I was gone. In a sense, I was planning my death, I had to get out and escape the pain that had consumed me. It was during this low point, I cried up what was to be my last prayer, to warn the other side I was on my way. The prayer did not go as planned. Instead of warning the other side I was coming, I cried to my Heavenly Father to help me step back from this cliff and continue my battle with this horrible, horrible pain and be here for my wife and kids. In my depths of sorrow and pain I felt a voice say to me, "My Son, you have endured great pain, but not as great as I. Cast your cares upon my back and let me carry you." For the first time in months I cried, not of pain, but of hope and joy. I still had the pain, but now I felt that someone was there who did understand and could truly understand my pain. The atonement was both spiritual for our sins, but it was also physical. Jesus did in fact understand my pain and I had someone I could turn to who did understand and who could help me get through this pain. I prayed everyday to help me through, to be there for my wife and kids, to be a better person and to help me fight this monster. I stepped back from the cliff, turned my back and started to painful walk back to my family.

Sneezes are Purple

Sneezes are purple! That's right when someone sneezes it is purple. How do I know, well while I was under the ketamine Dana sneezed and I saw the color purple. Weird I know, but it got me to thinking about how the brain operates. I am getting better day by day, physically, I am doing better but have resolved the fact that I will never get back to 100%. I have to listen to my body and stop when it says stop. But at least when the problem is physical you have a yardstick for progression: sore muscles, stiff joints, building muscle. With mental progression, there are no such yardsticks. Each night I am so tired, but cannot sleep, or have trouble falling asleep. Why? Well, part of the "recovery" from ketamine is having my brain sort through the hallucinations and "filing" them away as non-sense or needed. Believe it or not, this is hard to do. When we are in our "right" mind, the thoughts, images, and impressions we get usually have something to do with what is going on right now. When I am working, I am thinking about work. How do I solve this programming problem? What is the best way to design this database? Your mind is caged and focused on the task at hand, this is the beauty of the mind, being able to direct your energies to a problem to come to a solution. Under ketamine, it is like opening the gate and having the chickens get out. For those of you that have chickens, or raised chickens, you know when the gate is left open and the chickens get out, they scatter far and wide picking here and there. If one finds a choice bit of food (a worm for example) there is a stampede to steal the food, it is chaotic. Once that bit of food it gone, then they scatter again looking for food until one finds another bit of juicy food to distract them until it is gone, and on and on it goes. This is what it is like under ketamine. Your thoughts range far and wide, sneezes become purple, sounds are interpreted in unusual ways. A bit of choice food is picked up (voices, sounds, or thoughts) and your brain runs wild with it, so concentrated on this one bit, then just as it begins to understand the morsel, it is gone and your brain scatters again. This is so different from how we think (okay at least how I think) that it is truly mentally exhausting. You don't have the luxury of directing or controlling your thoughts, under ketamine your "chickens are running free" and it is confusing and bewildering. So the after affect of this metal exercise is trying to put your chickens back in the cage and make sense of everything. For me, this is when I fall asleep, my brain starts to file the images and it keeps me awake. Some of the visions that bubble up are weird and confusing, others are scary and I start awake then try to go back to sleep. Not getting into a deep sleep exhausts me, but fortunately they are starting to lessen and sleep is finally starting to come. I hope one day, to lay down, close my eyes, and fall into a deep sleep.

The continuing battle...

Well so far so good, at least physically. It is amazing the body heals fast, but it is also amazing how the mind takes a while longer. Pain levels are very, very low (often 0 to 1 on the pain scale), but I continue to have "flashbacks" when some of the hallucinations come screaming back. For example, on Sunday, I was holding Joe and he grabbed hold of my thumb with both hands and the way he held it dug up a flashback. I remember on ketamine day two finding my hands and interlocking them on my chest and gripping them so hard it ached even through the haze and remembered Dana asking if things were okay. She asked me what was wrong, and I remember replying, "I am getting a hold of myself so I don't come apart." This was during the episode where I was in the darkness and remember how it was so confusing, so spiritually deadening that I felt I had to physically hold myself together. Thinking about it now, it does seem silly, but I vividly remember that I did indeed feel that I was going to fall apart, I don't know maybe lose grip on reality. Amazing how powerful the mind is and how much control it can have over the physical body. Next steps, well for one, pray every day this stays away. Step two, take each day as it comes. I am in a battle for the long haul. Every day I must fight to keep this monster at bay from now until the day I die. If I slip a little, I have to fight extra hard to regain the ground I lost. The battle is equal parts physical, mental and spiritual. Needless to say there a lot of prayers involved. We were reading online about chronic pain, and research has proven a link between mental health and controlling chronic pain. It is so easy to get into a pain cycle and so very hard to get out. The pain cycle begins with depression setting in and letting it take over, then the pain flares due to mental fatigue and the will to fight weakens, so the pain grows and the depression deepens. And well, on and on till you sink so far the only way out is to get "out" of the game permanently. That is a scary thought right there, image, me full of life with an eye to growing with my family, anticipating growing old with Dana, and there I lay, in the dark, by myself, entertaining the thought of getting out. So how do you break the cycle? I wish I knew. For me, it was after the first ketamine infusion and the pain left and I got to finally meet my new son Joe. Two months of his life are gone to the monster that I will never get back, and the first two months to boot! So I am amazed that he is doing the things a normal 4 month old is when I still see him at 2 months. A patient wife and kids who love me helped me break the cycle and give me something to live for. For the first time in months, my youngest daughter didn't need to ask permission to sit on my lap or worry about hurting dad's knee. At three, she knew I was in pain and was looking out for me, but inside I was hurting to think of what she must be thinking about. One day Dad is running around, teasing, laughing, the next sitting in a chair staring vacantly into the distance, it must be hard. So I fight, I don't want them to remember me in that pain, the "Missing Daddy" as I call myself. I want them to remember it as a time when I was hurt, but it is behind us and I can be a good Dad and Husband again. My kids need me and I need them and I need to be here for them. I especially need to be here for Dana. It pains me to know she was a single mom for 8 months fighting to keep control of the house and kids and worrying about me. She is strong, and beside me will fight with me so we can grow old together. I love that woman.

Round two was not as good as round 1.  On the first day, we started the dose between the second and third day last time I went under (about 3 cc's) and they pushed the ketamine quit aggressively.  In my hallucination I started to feel nauseous and and almost threw up.  They doctor came in and gave me some medicine to help with the nausea, which helped, but it sure made waking up hard.  I don't remember any of the hallucinations during this round.

Day two was a little better.  I went to 3.5 cc's.  As I went under, I had a bad feeling that what I was going to see was not going to be as interesting as last time.  This time, it was dark, very dark.  I remember trying to run from this darkness that was everywhere. It boiled and seethed and was restless.  It was thick like oil, but as fluid as a billowing fog.  It was trying to overtake me.  I could not get my bearings, up was down, down was up.  The only think I could possibly compare it to would be outer darkness.  It was horrible.  I forced my eyes open to try to get some grip on sanity and when I closed them again, I saw a light I started to run to.  As I ran, the blackness chased me, surrounded me and tried to swallow me. Just as I got to the light, it shrank back enough for me to escape.  I don't know how long I was there, but it seemed like forever.  If this is anything like outer darkness, I feel deep sorrow for those who go there.  I came out okay, but at the car I threw up and had a massive headache.  I sleep little that night.

Day three they bumped me up to 4 cc's.  This was the highest dose I have had.  I was extremely scared to go under after yesterday.  My blood pressure was up and I was fighting the anxiety.  I went under fearing the worst.  This time, I could not remember anything.  I did force my eyes open for a while and talked to Dana, but it was more confusing to see Dana and hallucinations at the same time. At one point I asked her if I was a machine, and I asked her if she could see the ribbons of gold and silver dancing around.  I made it through and was able to recover from this round better. Dana told me to go down and fix my knee, but I told her I had already pushed the pain down my leg and out my foot.  I remember pushing from my head to my toes and watching the pain shoot from my left leg in a blinding ribbon of light.  I kicked my left foot to get free of it, and it shot across the room and through the wall and was gone.

So far, the swelling is down and the pain is gone.  The affect of day two still haunts me and I am having problems sleeping.  I don't ever want to see that again!

Our doctor told us this was his last week at the clinic and he was going back to practice at the hospital. This is good since we found a new doctor.  I was given a blessing a couple of weeks before and one of the blessings was to find a good doctor.  We did.  The new doctor has access to U of U pain clinic and has already suggested some other routes to battle the CRPS.  For now, I am physically okay, but I am still shaken by what I saw on day two.  I hope with time it fades away.