Well here we go again. The first weekend of March I had another "seizure" in my sleep which continued for a while after I woke up. Apparently I was twitching and jerking hard enough to wake Dana up. She shook me awake and I sat on the edge of the bed and continued to twitch for a few minutes. Again, all of this was on my left side. I laid back down and went to sleep. I don't remember any of it! I know I was tired the next day though

The pain has now started to reach critical mass. It usually hovers around a 2-3 on the pain scale, but it has started to creep up again. It is to the point I have to start to start taking pain killers on a regular basis. That is only "dulling" the pain not helping block it. The burning is returning as well. My last block was September of last year and at that time I was put on an experimental pain cream to rub on my leg. I think it helped keep the pain level.

Mentally, I am exhausted. I am on edge all the time looking over my shoulder. I am taking some brain meds to help, but they seems to do more harm then good at this point. No sleeping, mood swings, checking out, becoming an non-emotional robot. This is hard on the kids and Dana watching me swing from sullen to angry. Makes me mad that I have no control over it, it is like watching myself from the outside acting like a complete stranger. Or acting as a puppetmaster with broken strings so my body doesn't act right.

I noticed yesterday that little man Joe and I have a routine. After prayers, put the kids to bed, he follows me into the bathroom and stands next to me as I take a handful of pills, wash it all down and get ready for bed. He grabs his sippy cup and beedee (blanket) and lays in the crook of my arm until he falls asleep and I put him to bed. If I take my pills without him he will stand in the bathroom and wait for me. How sad, poor kid won't know anything else but Dad taking pills.

Thanks all for the prayers for myself and the family as well as the words of encouragement and support. I hope the next post will have some better news, like the block taking the pain down to...dare I hope at 2! I guess all I can do is wait and pray.

So, it appears that there have been people viewing this blog, and I think I am now ready to continue posting as time permits. Let's see, where to start, first and foremost, yes, I still have CRPS. I expect to have it the rest of my life, it has been verified by three pain specialists now. I wake up every morning, sit on the edge of my bed and while my blood pressure evens out (the meds I am on, can cause lightheadedness) I have to make a decision every day, "Do I want to continue to fight? Is it worth it? Why bother?".

Well the answers still come, "Yes, Yes, and you have a beautiful wife and seven kids you need to provide for, so it is worth the bother."

So I struggle out of bed, get ready for work, take my morning pills, and go. For a while, one of the cars was broken down, so Austin would drive me out to work and pick me up. It was a great week. We got to talk about music, girls and the struggles of a teen going through angst, God, church, and about me and this disease. We try to dance around it, but it is hard to do when it has invaded every aspect of our lives. AJ has really been smacked upside the head by this. I know he stuggles to see me fight to provide and just be a Dad. But you know what, he makes me want to get up.

Joe (Nathaniel) has finally learned I am not going away and he is stuck with me. As he runs around the house babbling smacking his sisters around and being very good at being 2 yesterday (1/28/2014) he shoved an pencil eraser up his nose and it was stuck. Dana was able to retreive it, but before you can clean up one mess, he has made three. He and I will lay on the bed, him in the crook of my right arm, he sticks his hands behind is head, crosses his legs and watches TV with me until he goes to sleep. He hugs me when I come home, and is quite the tease, I have officially become "Da" now.

The other kids (Colten, Morgan, Grace, Lilly and Gillian (DeeDee)) are adapting to a "new" Dad and making adjustments as necessary. Who is the "new" Dad, well, it's me.

For those of you who have known me, I loved to go to parties, teach college classes, and be out there, joking around, life of the party, etc. Now, not at all. I prefer to hang back, let others to the talking and stare at the floor. To many seizures, facial tics, and stuttering to risk it any more. At times I was shaking so bad it looked like I had parkinson's disease. The pills I was on stoned me, or made me suicidal, or put me to sleep. The experiments with doses and hoping the side effects of a pill will help only to have worse side effects, the night terror's, the pain pill addiction, the hallucinations on the Ketamine, the nights of no sleep (sometimes 2-3 nights in a row), the forgetting of names, people, important dates: Stopping mid-sentence to grapple with finding the word I wanted to use, having to take six months off work, watching as people stare hopelessly at you wanting to help but not knowing what to do. All of it takes a toll on me, physically, mentally, spiritually and emotionally. Oh, and throw on the financial strain of a wife quitting her job to care for you full time and a stack of medical bills that grows each day and it crushes me more and more.

I have found a good Pain Doctor (any if any of you are reading this because of CRPS, this is MOST CRITICAL!!!), who has managed my drugs and I now get nerve blocks in my leg to shut it down for a while, but it always comes. When the blocks fail to work, I am looking at either a pain pump or spinal cord stimulator--permanent intrusions into my body that carry risks all of their own. I have a team of experts at the U of U including Neurologists, Pain Specialists, Physical Therapists, and Psychologists.

Believe it or not, one of the "side effects" of constant pain is anxiety and depression. They all seem to go hand in hand. Lucky for me (if there is any sort of luck in this at all) I have a warning system when the anxiety builds, it's called a cluster migrain. It will start with silver stars streaking around, then move to silver auras, then SLAM!!!!!! Intense pain in the left temple, tender to the touch, light sensative, the works. This is the first clue my anxiety volcano is about to erupt. If I can't stop the migraines, then my body needs to get rid of the excess anxiety pressure so I go into a non-epileptic seizure on the left side of my body. My record is two hours until I finally was given a sedative to knock me out, and I spent hours in the emergency room with seizure after seizure. Once the seizures come, the CRPS comes roaring back. My leg startes flaring after the first migraine, once this happens it is a downward spiral that is hard to get out of. Migraine, CRPS, Anxiety, Seizure, Depression, Stress and round and round it goes deeper and deeper down the rabbit hole. I fear one day I may not be able to get out. So far we have been able to break it by attacking the migraines and using nerve blocks to shut down the CRPS, but I fear, each time is wears more of me away,especially mentally. I truly feel that one day I might not be able to break the cycle and drastic measures will be taken to stop the maddness, ie spinal cord stimulator or pain pump, or worse...

Hey for fun look up the drug ziconotide, that is something for me to look forward to isn't it? The side effects are just wonderful!

I have been asked to describe the pain. Well the only way to describe it is like sticking your leg over a roaring hot fire and not moving it, and having the lightest touch of a feather feel like a welding torch across your knee, and the pain never lets up--ever. If you have time look up the Mcgill Pain SScale, my pain on this scale is called causaliga, and unlike other types of pain, this is constant. Pain meds don't work to dull the pain, only dull my brain, because the sympathetic system is transmitting pain (and it isn't supposed to).

At times I get angry, so mad about this. Why? Why do I have to suffer so much? Why am I made to go through so much pain and misery? I suppose there is a greater purpose or a lesson to learn, but I think it would help if I knew what it was. It breaks my heart to hear my seven year old (Lilly) sobbing on her bed because she wants a regular family and a fixed Daddy. It is hard when DeeDee comes up and asked is she can sit in my lap because the monster in my leg is asleep. It is hard for my kids and wife to not hug or hold me without asking about my knee. It is hard to see the panic rise in Dana everytime I get a pain or get hurt "How's you knee," I am asked, seems like second nature now. It kills me, I should be the provider and protector, not the provided for and protected.

We are lucky and do have neighbors that help by taking the kids, providing meals, etc. but I don't even talk to them much, I don't go to church much crowds make me nervous now. So what's the answer, how do I make this post a little more upbeat. Well, the kids are healthy, Dana is holding together the best she can as she watches the person she married seem to slip away, and I can still work for now, but I am afraid there is no way to make this happy. I do feel blessed I have a wife that is strong willed enough to fight with me, kids that are tough enough to live through this, but as I keep saying, you can't walk through hell without some of it sticking to you.

I will end with a positive note. I want to thank each and every one of you that have prayed for me and my family. Believe it or not, through all of this, I do think this is a big contributor to my survival and my family's adaptation. Please, keep the emails coming, not just for me, but for Dana and the kids. Thanks to those family members who reached out in our time of need. Lastly I will say that I will thank Jesus for the atonement. He not only suffered for our sins, but for all our pains, so I turn to him in my deepest pains.

Thanks all, I expect to keep this updated more often.

John

Due to the continuing battle with CRPS and the progression of my condition, I can't keep up with this blog any more, I have to spend what little energy I have left trying to get better now. I will leave this up for a little while longer, I hope it gives someone some hope, to all my fellow CRPS sufferers out there, God bless, hang in there, and find a good pain doctor, it makes all the difference, and keep fighting! Peace. John

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