Going to the Hospital

Here is an update:

1. Tuesday October 9th I will be going into U of U medical center for up to 10 days to do an observational/video EEG. My seizures are getting worse and the Neurologist wants to observe me during this time and try to capture them on film and EEG to see what is going on. He thinks it is related to my CRPS via PTSD and/or Complex Stress Syndrome brought on my all the medication I was on initially, the ketamine, stress, and the overall condition of my neurological system damage due to the CRPS. During this time, I will be put under stress to bring on a seizure.

2. As we indicated in the last post to the blog the situation is getting dyer. The flyer Dana put together we are going to post in businesses around the area, if you can we ask that if you know of any that will participate please post them. More information will follow on a big yard sale and auction of donated items from businesses in the spring. If you need a copy of the flyer, please email me and I will get it to you.

3. The other attachment is a flyer from Chick-Fil-A in Riverdale City Utah. On November 13th of this year from 5-8 pm anyone who goes into the store and orders food and mentions they are there for "John's Spirit Night" they will donate 25% of the nights sales to our cause. The flyers can be printed and passed out to whoever can come. The more the better. You do not have to have the flyer, you can just mention you are there for "John's Spirit Night" during the transaction to help out. I will post more on Facebook as it gets closer, so please post it and let everyone know and spread the flyers around and pass them along via email, print them out for schools, church, businesses that will let you, anything to help. If you need a copy of the flyer, please email me and I will get a copy to you

Your prayers are appreciated and your thoughts. Thanks one and all, please email me if you have questions or items to donate or want to help in any way you can, we can sure use it.

Thanks. John, Dana, Austin, Colten, Morgan, Grace, Lilly, Gillian, and Nathaniel

Finding it Harder to Smile

It sure it getting harder to smile. The pain in my leg is not as bad, it is still there, but not as bad. My physical therapist said she has gone as far as she can with me and it is now time to take the "leap from the lion's mouth" and start to use it as normal, but I will always be leery of CRPS coming back again. We are fighting with the insurance to try and get me on a new nerve pain medicine for the last month and they are weening me off the samples I have been given and moving me back to my old medicine. The CRPS is creeping back again and if we don't get a handle on it, it will come roaring back. Looks like I will be on these medicines the rest of my life to try and help control the pain.

I had another seizure again on Saturday (September 29th). The plan was to have breakfast with the kids, and get the last of the plants in the ground and get ready for Winter. That WAS the plan. I was in the grocery store and I felt it hit, I made it to the car and BAM, full on seizure. Next thing I know I am home in bed. This was three days after seeing my neurologist. The plan, now, is to have me go into the hospital for a video/visual EEG. I am going in on October 9th to U of U and can be there anywhere from 5-10 days. During this time, I will be put under stress with sleep deprivation, flashing lights, medications, exercise and other stuff to try and get me into a seizure so they can record it on an EEG. My neurologist thinks this is related to Complex Stress Syndrome closely related to the CRPS. What does this mean? I don't know.

I am now up to 17 pills a night if I don't need to take any pain pills, and I spend between $250 and $300 out of pocket for pills (the difference is if I can get coupons for some of my pills), in September we spent $450 in gas just trying to get to doctors appointments, coordinating between 5 doctors, and trying to get prescriptions. Austin was pulled from NUAMES early college because of the stress and because of the added responsibility at home. The three boys are starting therapy, my oldest daughter is sleepwalking, my second daughter is very clingy, and my baby daughter (the one who found me in my last seizure) still checks on me when I am asleep and will come in 3-4 times a night with "nightmares". I am not allowed to drive so it puts more burden on Dana until Austin gets his license. Dana now has 7 kids to look after including homework, and cooking, trying to clean, and look out for me. We are all stressed, and looking down the road, doesn't seem to be to rosy right now. More psychologist visits, possible long term disability for me which will cut my income 40%, Dana had to quit because I cannot be left alone with the kids because of my medications, and I can't teach right now. So 75% of our income is now gone

When we tell people about our condition, they gasp and are horrified, then tell us if we need help to call, but can't wait to get away from us. No one looks us in the eye, and I am a leper now, a curiosity. If it wasn't for some close friends and a very good neighbor we would be completely alone through all this. We do have some family helping picking up kids (which believe me is a huge help) and others who are helping when they can and work has been kind enough to work with me as well, but it is hard for me to try and explain my situation and watch as people begin to dart their eyes trying to look for a way to escape. So, I just tell people I am sick with a neurological condition that we are trying to put into remission. They seem happy with that, and I have learned that most people don't really want to know how you are doing.

So there it is laid bare, we are not doing so well, the smiles are strained and we are clawing to survive. This disease has not only consumed me but my whole family, I think we have all aged 50 years. It is hard to see blessings during the trials and it is hard to thank the Lord for them while you are in them. We keep moving forward and we keep trying, I guess that is all we can do. I can't sugar coat it, it isn't pretty, we are looking at in home care because Dana can't keep up and is struggling to be a Mom, Wife and nurse. I no can no longer go into crowds, where I once loved to teach, go to functions, be in the crowd and mingle, I now get stressed and try to crawl into myself and hide. I am often confused and have trouble concentrating, sometimes I am lost in myself, other times, I don't want to talk to anyone. I startle easy and just want to stay inside, life sucks now.

John

Wow it sure has been a tough couple of weeks. As you may or may not know, I have been having seizures (5 now) so my pain doctor and my Primary Care Physician both thought is would be necessary to get me into a Neurologist. Well, Utah has a shortage right now of Neurologists and the best I could hope for was an appointment at the U of U in four to six months. So, we did what we could and the family started to pray for an opening. We managed to find an opening with a Neurologist that specializes in epilepsy and pain managment August 20th. So we went to the appointment and we showed the Doctor the video of my last seizure and the after math. He was very impressed and was able to see what happened during and after. The other seizures happened around 2:00pm or so. I would start to shake in my left hand, then it would proceed quickly to just my left side. I would shake in my left arm, leg and jerk my head to the left. The first seizure lasted 2.5 hours before it stopped. The others we could get to stop quicker (around 30-45 minutes) with medicine. The last seizure though was different and very, very scary. I had a dream I was working on a deck for Grandpa and Grandma Wright's house. It was still blue so it was a while ago in the dream, and the deck was rickety. In my dream, I fell off the deck and landed on my left side smacking my head hard on the ground. The pain was excruciating, like a nail driven into my left temple. In my dream I started to shake and sometime during the dream seizure, my body started to seize. I became aware of my situation and when I realized I wasn't dreaming, I found myself in a hard seizure. No one was in the room since everyone thought I was sleeping. So there I was seizing on the bed hard, unable to call for help, so I cried to the Lord for some help. Just then Gillian (DeeDee) came into the room. Dana had told her to leave me alone, but she came in anyway and saw me. She came close with a look of fear in her eyes and asked "Daddy, are you going to throw up?" To which I croaked, "Yes, get mom". Do DeeDee ran out and told Dana I was throwing up. She came into the room and saw me in a violent, hard seizure. She got the medicine in me to calm me down, then grabbed the cameral to film me. After I had a painful headache similiar to a cluster migrain, which slowly calmed down to the dull, headache I had since my seizures started. Poor Gillian, she was so traumatized by the seizure she saw, now if I am sleeping, she will come in and check on my ever 10 to 20 minutes just to see if I am okay. Also, when she comes to sit on my lap she always asks if the "monster" is asleep in my knee so she can sit on my lap. A three year old shouldn't have to ask Dad about his "monsters" to sit on his lap. She is tough, and I think as we figure out what the seizures are from, they might go away and she can stop worrying. Grace has started to sleep walk more. She will come into my room and to my side of the bed and start talking to me. When I ask her what is going on she repeats the gibberish and just stands there. I will get up and give her a big hug, tell her I am okay and she goes back to bed. She doesn't remember any of it and it is increasing. I sure hope she finds peace to sleep through the night. So, we showed the Neurologist who said I was having a non-epileptic seizure brought on by pain, anxiety, and depression. He said the my brain was storing up all the pain and anxiety and it would finally release it as these seizures. He ordered and MRI and an EEG to see what was going on in my Noggin. So on August 20th I was squeezed into an MRI machine for 45 minutes while they took pictures of my brain. My head was wrapped in a cage and I had to pull my shoulders into fit into the tube. I closed my eyes during most of the procedures. I had on headphones to block out the noise and a squeeze bulb in case I panicked. So stuffed into a tube barely large enough to fit me, head in a cage, packed in tightly, the MRI began. One time I opened my eyes and the top of the MRI was about 4 inches from my face. I don't think I was clostrophobic, but it sure was nerve racking. That night Dana was rubbing the pain cream on my leg and she noticed "bumps" behind my knee. So Tuesday, we went to the pain doctor to see what was going on. Also, I told him about my headache and he proposed a procedure where they shove q-tips up my nose to behind my eyes numbing the way up, then having me sniff medicine. He said it was hit or miss and I said lets do it since the headache was getting worse. So we scheduled for Thursday and left. Wednesday I battled my insurance for my pain medication. They were needing prior authorization and in the meantime my pain pills were out. So the Doctor prescribed me another kind to hold me over so I had to run from Clinton Wal-Mart to South Ogden, back and forth to get some pain relief until they figured it out. Thursday, I had my procedure. It was, well, I would say uncomfortable. It didn't really hurt, but having something shoved that far up your nose is not comfortable. The procedure worked and the headache dimished quite a bit. The doctor then prescribed me a pain med that was on the list of meds to try before I get my pain med. But as we tried to fill it, it was denied needing a prior authorization. I guess they want me to try aspirin or something. Friday I went to Physical Therapy where I did mirror therapy. By this time, my knee was at a 5-6 constant pain and flaring to 8 at times. In this therapy, I strattled a mirror and looked into the reflection of my right leg in the mirror. To my brain it was my "left" knee. So as I massaged my right knee, in the mirror my "left knee" was massaged and my brain thought the pain in my knee was gone. It was really cool. However after three to four massages my brain figured it out and the pain came flooding back. I still do this procedure today. Sunday (August 26th) I had to stay up all night to do the EEG on Monday morning. So the plan was to keep me company in shifts. Dana lasted till 11:00 till she fell asleep on the couch. Oh well, I turned on my Xbox and played Darksiders II until about 5:30 in the morning. Then I switched to news and at six fell asleep for 5 minutes when Dana woke me. Then in for the EEG where they glue electrodes to my head and test my noggin. It started off with a relaxation to get a baseline, then I had to hyperventalate for three minutes. During this time, my brain switched from dream/tired mode into Ketamine mode where everything turned electric blue and I starte to hallucinate. I was then told to sleep for a while, which I just hallucinated, then they flashed lights in my eyes, took off the electrodes and clips and sent me home to sleep. My head looked like I had an angry animal on it with it splayed out everywhere (I got a picture, I might post it). Tuesday I had the nerve block. A small catheter was inserted into the back of my left thigh next to htte siatic nerve, and I got an injection on the top, inner part of my thigh to numb that nerve. I was hooked up to a pump and for three days sat around with a numb leg. Thursday I started to get Gout again, so I started my medicine to stop it. Thank goodness my leg was numb so I didn't feel it. By the time the took out the cathater on Friday I had 12 hours more of numbness so the Gout was on the downside. So far the block has helped quite a bit. So where am I? Well, the pain is down (which is good), but I am suffering from the side effects of 15 different medicines. I lose my train of thought more and more, and my concentration is suffering. I have a ringing in my right ear, and now my body will jerk or shake at times. One day at a time, one issue at a time I guess. The Neurologist will review the EEG and MRI and we find out on 9/13 what he sees and if there will be more pills or treatment. I see the pain doctor next week as well and we will go from there. So I am not out of the woods by any means. I still cannot sleep well, I am being treated for PTSD from my Psychologist, and I still suffer from side effects of all the meds I am taking. I am moving a little forward, but still have a long, long way to go until I am "fixed". Thanks for the prayers, and if you lasted this long, I just want to say, that emails, phone calls, texts, anything sure helps us out. It feels like we are a wreck on the highway that people pass and look. So any words of encouragement to the family, Dana, or myself is good to hear. Let us know you are out there. John

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.

My Battle With CRPS

All,
Due to our lack of getting information to everyone, and to help clear up the situation, we are sending this update with more detail. We appreciate all the calls we have received, and thank all those who have contacted us. As Dana and I got to talking we thought it would be best to let everyone know exactly what is happening with me as well as the family.
Last year I was visiting the graves of Mike (father-in-law) and Howard (his brother) at the local cemetery. On the way back from visiting Howard’s grave, I scooped up Gillian in my arm and started to walk back. Half way back I stepped into a hole hidden in the grass and went down. Since I was holding Gillian, I did not want her to get hurt, so in order to prevent the injury I landed with the full weight of my body and Gillian’s body slamming my left knee on a headstone.
During the next month my knee began to buckle and started to hurt. I complained of “ants” crawling under my skin and there was tenderness to my knee. We scheduled an appointment with an Orthopedic Surgeon who decided to go in a look around.
After surgery on my knee, the pain continued to get worse, it got so bad that even the lightest touch on my knee would shoot pain up my spine. We visited other doctors and they all gave different answers to the problem and continued to prescribe a variety of NSAIDS (ibuprofen type drugs) trying to ease the pain. In late November and early December I visited the ER three times for pain in my chest and stomach, and eventually wound up at the U of U where they found my stomach riddled with ulcers. I spent a week at U of U and the whole month of December at home recovering. During this time, I continued to complain of acute knee pain and the “ants” were marching so much that I kept brushing my knee trying to wipe them away. At this point any touch whatsoever on my knee sent pain rocketing up my back and I started to lose sleep, often getting only 3-4 hours a night.
In January I was sent to a pain clinic where I went through a series of 4 sympathetic lumbar blocks in my spine (a six inch needle was put next to my spine and medicine was injected to block my sympathetic nerves). It was during this procedure where they diagnosed me with CRPS (http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome and http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm). There is no cure for CRPS, and the diagnosis devastated us. During this time while we were trying to put this into submission, I slipped deeper and deeper into a vicious pain cycle where I got more and more depressed and hurt so bad I could not function. I was on at a variety of anti-seizure, anti-depressants, and pain pills. As the doctors tried to treat me with a variety of medicines I got sick, my appetite dropped and became more and more withdrawn. My leg hurt so bad I shuffled to work and I developed a facial tick every time the pain shot through my body. My speech was impaired due to the pain and I developed a server stutter. My co-workers and kids referred to me as “zombie John” because I looked like a zombie. I was only getting 3 hours of sleep a night which didn’t help the depression and my mood. Often I would come home from work (I have two jobs, my regular job and I teach at Weber State two nights a week), eat a piece of bread, take all my pills and lay in a dark room until I passed out from exhaustion then wake up multiple times through the night due to pain.

As the pain progressed, I was given Dilaudid (Hydromorphone http://en.wikipedia.org/wiki/Hydromorphone) which is a very powerful narcotic drug to try and ease the pain. I started out on a low dose and quickly went higher and higher trying to get on top of the pain. We had to fight our insurance company for the drugs that were prescribed often force on another type of medication that wasn’t “exactly the same” only to have my condition worsen and the switching of drugs made me throw up.
The only option the insurance company would allow was a spinal cord stimulator which would be implanted in my back to block the pain signals. This is an invasive surgery where a permanent device (similar to a pacemaker) would be implanted in my hip with leads going to the spine. It was considered radical and both Dana and I prayed about this solution and we both received strong confirmation that the stimulator was not the right course of action to take. We asked if there were any other options.
Our doctor gave us another option to try and control the pain called a Ketamine Infusion (http://en.wikipedia.org/wiki/Ketamine). It involved me getting an IV and be given high doses of the Ketamine through a three day process increasing the dose each day to try and “reboot” my brain. It was not covered by the insurance, so we took the last of our money and I underwent the procedure. It was a hard three days of my life. I was mentally, physically battered and felt like I was stomped by elephants each day. A blessing was I was able to withstand the higher doses so I was given high doses. The infusion worked for 5 weeks suppressing the pain.
CRPS involves the sympathetic nervous system (http://en.wikipedia.org/wiki/Sympathetic_nervous_system) which controls the fight or flight response as well as other functions. It is always on monitoring for changes and notifying the body of changes quickly. It is not used normally to transmit pain. In CRPS, this system takes over pain signaling to the brain. Because this system never shuts down, it sends pain signals to the brain all the time. The most common complaint with CRPS is the “burning” sensation. I liken it to putting a heating pad on the highest setting and putting it behind my knee or a bad sunburn that never cools down. However, unlike a heating pad, you can’t shut this off or remove it to get any relief. The fear is that this will hardwire a pain signal to the brain that will not shut off. Think of it as a highway to the brain, non-stop. The Ketamine acts like road work that can disrupt the pain signals to the brain and the hope is to destroy or shut down the “highway” for good. The spinal cord stimulator only blocks the signals, but the highway is there getting bigger and bigger only I would not know it, it does not tackle the problem itself. However, if you look at the time and effort to destroy a highway, the same effort is needed for the Ketamine to destroy it so to speak, so it takes a toll on me and my body. The body, however, will try to rebuild the paths back, so any time I feel the pain coming back, we need to act fast to stop it, so I will be stuck with these infusion my whole life. Over time, I may build up a tolerance which would make the infusion worthless and we would have to look at other options.

On May 6th (right after the infusion) I suddenly started to shake in my hands that spread to my arms and quickly to my body. I could not control the shaking. Soon I was shaking all over the left side of my body and could not stop. Dana threw me into the car and drove me to some people in the ward with medical training. They saw me in the car having a grand mal type seizure and called the ambulance. I was taken to the hospital again where I shook on my left side for 2 ½ hours before they could control it with Valium. This episode exhausted me. The next day, I suffered another “seizure” where I shook for 30 minutes before we could get another Valium into my system to stop the shaking.
I went back to the doctor and we found that I was having an extreme reaction to the medicine I was given and we lowered the dose and it appears to work. I must confess, as I watched the video Dana took of me seizing, I broke down into tears, and I could not watch it. Just to write about it makes me upset it was that scarry.
After we adjusted the medicine, I was almost back to normal, having gone through what I did, I am no longer the same person and I don’t think I will ever be. During my infusion I “saw” a lot of things and it was more of a spiritual journey bringing me closer to Christ and his scriptures. People have commented that I am not the “old John” they remember, I smile more, but I have change. I cried when my youngest two daughters climbed in my lap gave me a kiss and said they were glad I was back.

The beginning of June the pain began to come back and I am now suffering again as the pain returns. We are scheduled again for another Ketamine infusion hoping we get it early enough to give me a longer time without pain. However, since we have to pay for them ourselves, this is the last money we have for this procedure.
CRPS is a neurological disorder that is not well understood and at this time has no cure. The best we can hope for is a remission, the worst is eventual paralysis as the limb becomes weaker and weaker, the bones soften and the skin turns purple. CRPS will often “spread” to other parts of the body often mirroring the pain in the original location to another. For example, the pain was located in my knee, but it is now spreading down my leg and up my hamstring. It can start to manifest in my other leg as it progresses. CRPS not only affects the physical it also affects the mental as well. Not only does the pain cause depression, CRPS has been found to affect the part of the brain that affects mood and appetite.
Dana and I are trying to come to terms with my condition; she continues to “fight” this monster to not take me back to the darkness I was in. I must confess, I feel like I walked through hell, and do not want to go back. We have shed many tears together emotionally exhausted trying to come to grips with our future. During the last 8 months, I watched my wife become a single mom while I lingered in the dark under the influence of heavy medications.
During this time, we had another baby boy which we scheduled close to my last lumbar block hoping it would help enough for me to be there for Dana. It didn’t work and I didn’t even bond nor care about Nathaniel for two months. My kids became scarred of me, which put me further into a depression. I became dependant on the Dilaudid and the first two weeks of my recovery after my infusion I was going through with drawls becoming moody, mean and I would shake constantly before I got over it. So I may not have hurt, but I could not enjoy my family for another two weeks due to the withdrawls.
This has turned our world upside down, not only for me but for Dana and the kids. She had to make choices where to put her time and as a result, the house is chaos and my boys have had to take on extra chores to help. Simple maintenance on the house has been overlooked. Austin has been sleeping with a broken window for a year now; weeds are taking over on the side of the house. We are at the end of our rope and don’t know how much more we can take.
I want to help so badly, but cannot risk further injury or acceleration of the CRPS, so I sit on the sidelines depressed and crying while I watch my family working twice as hard to make up for me and to see the look of panic on their faces if I complain of pain. I see the feeling of hopelessness on their faces as I struggle with the pain and there is nothing they can do to help. I see the hurt in their eyes when I can no longer interact with them due to pain. It was a tease for me to “be back” for 5 weeks only to be taken away again.
There is some hope to put my CRPS into remission for longer. UCLA has a pain clinic which specializes in CRPS and has a month long program to help people cope and overcome CRPS. The Doctors there are on the cutting edge of finding a cure and methods to control CRPS. It is not cheap and, of course, the insurance will not pay. Dana and I are trying to organize fundraisers and other methods to save enough money for me to go. It is believed if you catch it early enough, you have a better change of remission. My family has agreed to go without to help save (which makes me feel guilty I am taking away my kids childhood). However, we both believe that if I do not go, I will continue to get worse and eventually wind up in a wheelchair and in the end be bedridden and invalid. I don’t want to miss my life, my wife or my kids. I want to be as healthy as I can to participate in the lives of my children and grandchildren but if we don’t act soon we fear that the CRPS will eventually swallow me and I will be gone.
We have been fighting this for so long and putting so many resources to this fight we haven’t kept everyone in the loop, and we are now going to give more updates as this continues. Now as we go to the next round, we are asking for prayers and to join us in a fast on June 24th for my family and me.
We don’t know what the future holds and that scares Dana and me. The emotional rollercoaster we are on tests our emotional endurance and we find ourselves on our knees praying for some relief. The help we have received from ward members and friends has been invaluable and there is not we can thank you enough for what you have done. May God bless you for what you have done, and we will continue to update you as the situation changes.
Feel free to pass this on to family members I may have missed. They were not omitted on purpose, and I would like everyone know what our situation is and what the future may hold.

John and Dana