Wow, I am so sorry for not keeping this up to date. I have to admit I have been on Facebook more but I have still been extremely busy.

First, I want to thank everyone out there:family, friends, ward members(I consider you all friends) and strangers for helping us out. We had some successful fund raisers and collection jars as well as very generous people during christmas. We still have bills rolling in, but it was good to see the kids have a good Christmas.

Condition wise, I still struggle. If it isn't the nerve pain, it is the migraines, the constant lack of sleep, the anxiety, fear, hopelessness, nightmares, and flashbacks that I still deal with. I went to the U of U for a week last year and had a video EEG to see what was going on with my seizures, and was back in the U of U emergency room December 2nd (again I was there the previous December 2nd too), and had 5 more seizures. I now have two Neurologists looking into the problem and are checking to see if the pain is causing the seziures, or the seizures are causing the pain. Once they decide, they will have a plan of attack.

My eyes are fine, as far as the doctors can tell, and the pain related to them may be the migraines. So there was a little good news.

I am also seeing the doctors at the U of U pain clinic. I have the best pain doctor who has helped me with my CRPS, but at the U of U I will get a comprehensive pain plan to try and manage this beast.

As I said I struggle every day, but I keep fighting. Daily I pray for a return to normalicy so I don't have my six year old daughter crying so hard she is hitching wishing for her "normal family" again. That is the hard part, not only does the CRPS effect me neurologically, it also affects those around me. It is hard to tell people about my condition because there are no outward signs, and it affects my family because they see me at my worst. It is hard to be in pain all the time, I tell the therapists that it just wears me down.

I hope to keep this up better so I can enjoy the kids more. My baby Joe is walking (before a year old even) and the other kids are just growing up so fast I feel if I don't get this under control, their lives will pass me by.

Thanks one and all for your prayers and thoughts it sure helps when I need it most. John

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