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