Wednesday, December 3, 2014

It's been a while, an update on life, reason for not keeping up on blog

Hello everyone! I know I have not been doing a good job of blogging and letting everyone know what we are up to and how lifes going.  It has been over a year since my last post! There are several drafts started but not completed sitting there under drafts. Maybe I will put them all together  in 1 post and then you can see bits n pieces. Any way I am very sorry I haven't kept up, theres many reasons I have not kept up and most are to boring to share!  So I am going to start with a little of life and whats kept me busy, then I have a big question for people, and then I may attempt to fillin some of the missing fun we have had.
So most people know I have Fibro, Sciatica and a sleep disorder.  You may even know Iam in pain a lot, that I use a walker or wheelchair for most things that take me away from home. If someone is finding out these thins right now by reading this, Sorry. I didnt leave anyone out intentionally. I have mentioned my health here and on Facebook once in a while. I have not gone into detail for many reasons, mainly Im not comfortable putting it all out for anyone to see, and I try not to complain. I have talked about pain and other things before but I try hard to avoid posting daily, weekly or monthly updates on me and my health, or how much pain Iam in, or what its done to life.I dont want to come across as a complainer, wanting people to feel sorry for me. I do NOT want others to feel sorry for me so DONT start now.  I also dont want to bore people who do not really care about my medical issues. I also do not like to think about it all myself, its a downer. If Iam writing it out Iam thinking it over. So for many many reasons very few people actually know all the facts and details. I did not do this to leave anyone out, it just happened. I have had it brought to my attention that many people that do not know everything do not understand why I do not do many of the things I used to do, and why I dont work, fieldtrips, outings and have people over more, and a few other things.  When Larry or I have tried to explain it does not go well. Unless your here seeing it, daily, weekly and knowing everything it would be hard to understand.  But it has created a few issues. So in an attempt to let people know more about whats going on, and keep people up to date on our life  I found myself wondering how do I do this, how to include more people in our life, letting them know whats going on without making tons of phone calls or putting it all on FB or here or else where. NONE of those options are good. I do not want some things out there for the world,  I dont want people who dont care to be bogged down with info about me, or to come across as a big self absorbed baby.  Unfortunatley this leaves people who do care, who want to know left out. I dont want that either. I realize I have done just that without meaning to.  So here's my solution If you want to know whats going on with my life and medical issues I need you to let me know. You can do this by email, respond here, Facebook, or instant messanger.  I also need to know if you want to be kept up to date as things change and Doctors do their thing. Iam going to put together a list of those wanting to know. I will email those people letting them know whats up and whats going on when theres changes. I can not call everyone and go over it all that way. Its time consuming and I have to much to keep up with here between kids, house, homeschool, my stuff, Husband stuff and whatever else calling is not an option.  It isnt to be mean or because I dont want to talk to you on the phone.  So let me know if you want to know whats up and be kept updated. Iam not going to be spending daily, weekly or even monthly updates. I will only update when things change, or something new comes up. My email is renaissancenh@gmail.com
For now Iam going to share a short version of it all.  I have Fibro, most know that. I also have a long list of other stuff, if your unsure what something in the list is feel free to ask, I dont mind explaining.  So here goes:
Fibro
Sciatica on both sides causing extreme pain and numbness from my lower back to my toes at same time. Odd I know.
Bursitis on both hips, hurts terribly
I have Nerve damage and pain from about the middle of my back down. We are still unsure of cause.
I am in pain 24/7. It never goes away, the only thing that changes is the severity. Some days Iam good, it is tolerable for some part of the day. Other days moving and holding still are both horrible.  I can wake up ok and an hour later not be ok. I can be good half the day and not the other half. Unfortunately when I have a good day I tend to over do it and then I suffer more. Overdoing it is something I'm good at and always regret.
Ok on with the list
MCS also knows as Multiple Chemical Sensitivity. Not a very well known syndrome. If you have an opinion thats somewhere along "it doesn't exist or its make believe" keep the opinion to yourself, I do not want to hear it. I am the one reacting to many chemicals, I Am not arguing over it with anyone.
I also have Narcolepsy a sleep disorder. It causes me to fall asleep doing normal everyday things like cooking, talking, showering, walking,  driving, just to name a few. So between the Narcolepsy and chronic pain that always gets worse when in a vehicle I do not drive much anymore. I cant, its not safe for me, anyone else in the van or others in other vehicles or walking. Iam ok for 15 to 30 minutes depending on the day.
About 5 months ago I woke up and my right shoulder hurt. Over about 1 week it spread to my fingertips. It would come and go. Over the course of another couple weeks it spread to my left shoulder and down to finger tips.  Coming and going. You know how your arm feels when it falls asleep? Well my arms feel similar to that, only worse. Its like having an electrical shock run down your arm and never go away.My hands swell horrid. When it started the pain and numb feeling would come and go. Now its here and staying.  Docs are unsure. It seems to be Nerve pain but we are unsure of the cause. I also have a spot on my upper back that hurts terribly and the pain runs from my spine down both arms. The pain is the least of my concerns with my arms. I Am rapidly losing the use of my arms. I have very little muscle control, strength or grasp in my hands. I drop things daily. Using them only makes them hurt horrible. They get cold easily, were talking cold, If you touch them they feel cold. Its not fun. I am unable to do much writing. Thanksgiving dinner this year was made by my family, I supervised(watched while they did the work pretending they needed my input to do it)
We recently say the Doc over this. He ordered 2 MRI's. I rescheduled them until February. They cost to much, even with our lousy insurance. He also referred me to a Neurologist.
He also says to start planning for when it gets worse. Make arrangements to have help at home for me, kids, house basically everything I can't do. Which is turning into much more that I like and much faster than I want. So we have been moving furniture, books, homeschool stuff, my stuff all around in hopes of making things easier for me and everyone else. We are also changing the way much of the kids schooling is done so that they are more responsible for their education. Also changing things and making sure Larry knows what we are working on.  We have also come up with a way for me to let everyone know what kind of day I'm having and the daily routine will be based on that.
We saw the Neurologist about 1 week ago. Henwas nice, thorough, listened to Larry and I, answered our questions and ordered more tests. In Feb. I will have 2 tests done on my nerves. A nerve conduction tests and I'm not sure the others name. It will tell him more about possible damage,,where damage may be, how severe it is and I'm unsure on anything else. Those tests will be done 1 week after MRIs on neck and upper spine. When he has results for all that I will more than likely have an MRI on my brain. So we should know more in February.
Like I said before if you want me to keep you updated let me know here, on FB, or email renaissancenh@gmail.com  I will need your email also. If I don't hear from you you won't get notified of anything so if you want to know let me know.
Jaelene