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


Thursday, August 15, 2013

Schools around the corner and other thoughts that may run through my mind as I type this update!

Hello everyone! It has been a while since I last updated here! Sorry bout that! Life has been crazy and as usual I forget to update here! So I looked to see when I last updated and wow it has been a while! Sorry! So I guess a lot has happened since my last post. So what have we been up to?? Larry was hurt at work, his hand went through a machine and it amputated part of his left hands ring finger. The doctor in the ER was amazing and was able to reattach it. It will never be the same as before the injury but it is there! He was off work for a while over that one. The kids are all good. They took part in the Library Summer reading program again! Loo read the most books for her grade! Sir N read the most for his grade! Baby E and Chubby both had lots read and won lots of prizes. They all won lots of prizes. They enjoyed the challenge of reading the most. They ended the contest with a pool party at the local pool and some drawings for prizes. We went and they had fun.
We have some friends in town that had a good sized pool and were given another one that was bigger so they gave us the one they had! It has been a lot of fun for the kids to have a pool here to swim and play in. We have been camping 1 time this year. It has rained so much that we have not been able to camp as much as we would like to. But the one time we went was more than 1 night and we had lots of fun! We plan on going more. Just need less rain and the ground to dry up so we can. 
We have not done much this summer mostly just stay home, relaxing, swimming in our pool, being lazy. We cleaned up a corner of the yard that has trees on 2 sides for privacy! and set up my porch swing and camp chairs there for a nice relaxing place to sit and relax and enjoy each other and friends. Its been a fun spot to sit and BBQ. 
We are in a different ward. Boundaries changed! So far we are enjoying the new ward. We also have a new Missionary center in Wichita with more Missionaries! We have Sisters in our ward now! With Larry's work schedule we have not been able to feed Missionaries. Now that we have Sister Missionaries we can! and HAVE! Since we are 45 minutes from Church we do not have the luxury of having the Missionaries in town every day to sign up to feed them so I just let them know if they will be in town and know it let me know ahead of time and I would love to feed them! So we have fed them dinner one time and they have visited us a couple times. We have been able to get to know another lady in the ward as well. She was the Missionaries ride. 
I have talked to the Young Women's President and Loo and the next youth Temple Trip I will chaperon and Loo will go as well! That will be in about 3 months! I am excited and look forward to that. I have not been to the Temple in a long time and Loo has never been. It will be her first time! 
Sir N is 12 now so he could go as well! Maybe he will go as well. We are slowly working on getting them to attend their classes on Sundays. 
We did not grow a large garden this year. We have some tomato plants and a few different pepper plants. And my herbs. I have spearmint,peppermint,chocolate mint, orange mint, cat nip, rosemary, lemon thyme, thyme, basil, 2 kinds of oregano, 3 kinds of lavender, and I cant remember what else. Oh and I have LOTS of Mullein growing all over the property. So we are working on containing it to one area and having a nice sized mullein patch. All summer long and spring we had these other plants popping up, I have said "don't kill it, move it so its not in the way, I know this plant but cant think of the name right now" So we have moved these plants with purple flowers. The kids and I were playing the game Wild Craft(about herbs) and I picked a card for Comfrey! Took one look and realized the plants I have been moving and protecting all spring and summer have been Comfrey plants! lol. felt kinda dumb for not being able to name the plants but grateful that I now know the name and that I have many growing here, I use Comfrey in many of the things I make. Comfrey salve is a big seller in my etsy store. So if I can get enough growing here I wont need to buy it anymore! I will know it is chemical free! and I love that idea! Exciting
Hmmm what else. Mom went on vacation a few months ago. She went from here to Roy's then Utah and back to Roy's. She decided to stay there. So she is now living in Colorado with Roy and Elesha. The kids have adjusted pretty good to having her gone. Chubs and Baby E had a hard time at first but are OK now. Loo stepped up and helps with dishes. Larry does them when he is off work, I try to help him as much as I can. When he is working Loo does them, I help her as much as I can. 
The others do their chores and the house stays in pretty good shape most of the time. 
We are getting ready for our school year to start! We will start September 9! We are going to the Kansas State fair for our 1st day! We are all excited! We love the fair! With Larry home again and me not working I am going back to schooling more like I used to! I have to be more organized with my medical issues. I am planning the year out like I used to. But am putting the materials we will use together by month to be used. Or at least that's my plan. I am trying to come up with a good way to keep everything organized by month to be used. All Septembers unit info in Sep box or something and so on. I do not dare just use boxes though so I need ideas. If anyone has good ideas I would love to hear them. 
We will have a good year. We are planning lots of fun units. The younger kids have never done a unit on rain forests, solar system or volcano's. So we are going to do them again! I am looking forward to them. I had a lot of fun the first time with the older kids. I think it will be funner now, since I did it before and know things I would have done differently. and I know what worked good! 
I have been feeling a lot better for the most part the last few months. I have been able to start walking again! I still use a walker and wheelchair at times. Walker if I am walking anything other than around the house. But I have managed to walk to the park, library and school. I have been able to take over cooking again! I do almost all of it again! The kids and Larry help when I need help or when they want to. It has been nice. I still hurt 24/7 but most of the time with meds it is tolerable! My narcolepsy is unfortunately untreated right now. My doc moved and I have to see a new one. So I am without meds for it and have been having a very hard time staying awake. I fall asleep doing all kinds of stuff, pretty much anything. So for the time being I am not able to drive at all, not even here in town. So that part stinks but hopefully the new doc will  put me on something the insurance will cover. Our current insurance no longer covers what I use. Next month our insurance changes back to blue cross! I am hoping that turns out to be a good thing. 
I am doing good in school. If I could manage to stay awake long enough I would be done with my herb course! I have 1/2 a quiz left to do. I am still enjoying school a lot. Business is going OK. Right now it is slower but that's OK, I couldn't keep up with more right now. Hopefully soon I will be able to do more and will get more business. 
That's it for now. Cant think of much else to say. We love family and friends and miss you all. We would love to hear from you all! Feel free t email us or comment here. I hope everyone has had a great summer. 
           Lady Jae
www.renaissanceofnaturalhealth.com

Saturday, February 23, 2013

February 2013



So its time (past time actually) for an update for friends and family! We have not had a whole lot happen, life pretty much stays the same. The kids are doing good in school! We have not done any fun projects recently, I have been focusing on getting the basics done. I hope to feel up to Wacky Wednesdays soon. 

Aldarion has moved back home! It has been nice to have him home. We still do not see him much since he works weird hours some days, but we enjoy it when we do see him.  

Marcan is doing good, were using a program called etap for his school, along with Khan Academy. He is doing great. He wants to finish school a year early, so we will see how it goes. He is now 16 and looking for his first job! Larry has been helping with math and that's been awesome! He has made progress where I was unable to! 

Melista is doing good. She is doing a variety of things for school. Very eclectic! She is growing into an awesome young lady. She is doing great in school, I love watching her grow and learn and be an independent person. She is still very shy but that's OK.

Nic is doing good, he is using an online school this year. I think it will be the last year. He has been doing it for a few years and has done good but its becoming a pain. He is growing up and is an awesome cook! makes killer home made spaghetti sauce.

Sebastian is great! Growing, learning, some things are finally clicking in his head! I love to watch him learn. His enthusiasm is contagious! He is such a lovable kid and he loves everyone.

Emma is good, no longer my baby. she is growing so fast, I am not ready for her to no longer be my baby, but I guess I don't get a choice. She is no longer a baby. She is learning a lot, learning to read,  and do math and write. I love watching her play. She has a very nurturing side to her.She loves to "doctor" any cuts or scratches anyone gets. She gets out the first aid kit and knows how to use the salves, herbs, and all that stuff. 

Mom is still with us. She is doing OK. No more health issues popping up currently. 

Larry and I are doing good. Focusing on surviving, healing our family, and just enjoying life, and paying bills. Larry loves his job! and is doing great with the company he works for.
I took a break from business due to my health. I am slowly getting it going again. Very slowly as I become stronger, or try to. We have membership at local fitness center and go work out as often as possible, I also use the Wii fit and exercise daily trying to improve my core muscles in hopes of it helping my pain in my back some. and in hopes of loosing weight that being on steroids caused! I hate steroids!  
In the process of getting my business going again we have redone my web sites, combining them into 1 site for everything. I am getting more traffic this way and more business happening. Also changed the newsletter for business. It is now called "The Cleaver Leaf, Getting to the root of things" Larry came up with the name. I still have the topics I had planned in it minus Wacky Wednesday. I want to keep it separate.  I also linked my autism blog to business, "Under the umbrella and still getting wet" It can all be accessed at  http://www.renaissanceofnaturalhealth.com/  Instead of having a store be a part of the site you can link to my Etsy site through the web site under "Essence Through The Ages"I would love to get some comments and feed back either on the site, the guestbook or email me at renaissancenh@gmail.com.  You can sign up for the new news letter on the site or by emailing me at renaissancenh@gmail.com with "Cleaver Leaf" in the subject line. if you are interested in my flyer program to make cash or product/consultations/discounts email me to let me know. You can also put my logo up linking to my site for discounts. Just let me know your going to. 
We finally got snow! LOTS of snow! We couldn't get out of our driveway for a couple days. We can finally get out and were being told more snow to come! I'm not even sure I dare try to go to Church tomorrow. So we are doing a wait and see thing.  
I think that's about it. No new pics right now, sorry. I will get some soon. I  do have some of everyone having a Lemonade(think tea party) with Emma, it was fun. Marcan was very embarrassed but still did it for his little sister, those pics will be up soon!
Hope to hear from friends, family soon. Love you all! I will try to keep up with the blog better, I know I have been slacking badly!
            The Huffman Family