We were hit with another road block in nursing as the last nurse that the agency sent to us only lasted here about 1.5 weeks. It was a HUGE surprise and not the good kind either. I had thought for sure she was "the one", but I had this feeling it was "too good to be true". Unfortunately she wasn't able to handle Danny's size, even using the lift was difficult for her. So once again Danny was stuck hanging out with his mom. Between taking care of Danny, trying to get a new regimen for MS, and getting ready for the holidays I was overwhelmed. I say I was frustrated was an understatement. Due to a "safety" issue they nurse was allowed to leave right away, no notice. I totally get it, but damn the timing was just "perfect".
I wish I could just throw the towel in all together with nursing. It's so hard to find "the right one" for us and I'm starting to wonder if it will ever work out for us. BUT reality is I can NOT do it on my own myself. Just to say that pisses me off more then you could know. I am him mother, I am suppose to be there for him and I can't do it. My body is more tattered then I want to except. I have found a fatigue and pain within myself that I have NEVER had in my life. It's just..... disappointing and depressing!
Out of the blue I had a FB friend chime in and ask if I was still looking for nursing as her night nurse was looking to take on a couple of day hours. Things have fallen into place and I'm happy to say that she started this last Thursday. She seems to be a good fit, but I am so on pin n needles to see if it all works out. I really hope it does as she's very nice, very knowledgeable and has a great personality. Time will tell! Say an extra prayer for us. If things do work out I'm just down to Monday 8hr day shift and every other Friday 4hr evening shift that I need to fill and then I'm back to nurses covering 12hr for us and I still do overnite as I'm not comfortable with that yet. Maybe someday but for now, Danny sleeps, for the most part, during the night ~ doesn't need to be suctioned or repositioned when he's sleeping ~ and I only get up 2-3 times a night right now so that's not too bad.
Rest In Peace!
Jan 11 ~ Sweet Ms Madison has left the earthly world and his now playing with the angels above. I'm sure she was greeted by many, but none the less it's still not easy to hear of another sweet pea passing away. My heart hurts
The brutal and cold truth to within my life. The "secret" I hold locked up far within some closet. Some day, usually very unexpected, this too will be our life. We are all dying, with each and everyday we are all one day alil closer. We are ALL terminal, but some leave our hearts sooner then later. We can have it too "good" with lack of illnesses and complications that allow us to be "normal", but the fact is ~ It WILL be us someday. I lay awake in bed most nights just wondering if TONITE was the last time I kiss that sweet face, stare in those blue eyes, and stroke that thick hair. In the morning, I am forever grateful my prayers were answered for one more day. I have a new fresh look on living each and every moment as if it was your last as the only true GIVENS in this life is you are born and you will die, and you will never know when all you will have is the memories left. Hug and kiss you kids tight, embrace them, and enjoy each and every moment you have as there are no guarantees for a tomorrow.
"Let It GO" ~ I listened....I mean I really listened to the lyrics to this song. And it was an Ah HA moment! 2014 wasn't the easiest of years and I hope for a better 2015. It was a difficult holiday, but one that was easier also. I had to finally walk away from my family drama. It was evident that lifestyles, values, and morals were very different then some of my family. I am too old for the BS that came with it and I will not fake it anymore. Why should I be putting on a front to make others happy. What does that show my kids....it's ok to be treated like shit as long as it comes from family. Well I wouldn't take shit from a stranger or even a friend for that matter and I'm sure not taking it from my so called "family". They made their beds and now they will have to live in them. I have dealt with it long enough. I have unplugged from the situation before it becomes really ugly. I know because I walked away I am the "Bitch" and I'm ok with that. I find it amusing instead of taking responsibility for ones actions they chose to be the victim ALWAYS. Someone is always plotting against them never acknowledging what they have done. They don't know my life or chose to want to know it, they just to say things they think they know. News flash ~ get your facts straight and stop trying to screw everyone over (including your own "family"). I've have learned nothing will make them happy, when they are never truly happy with themselves. It's about time someone finally shows them there are consequences for their actions and no one can bail/help them out of this situation. It will never BE BETTER. We will never see eye to eye and I've agreed to disagree and walk away.
With that comes another set of change. Holidays and celebrations will never be the same. I have my life, they will have theirs and I will work at them no coming together. I will be cordial when I have too, for my mothers sake and she is caught up in the middle, but for the most part their will be 2 different identities from here on out. So we are starting new holiday traditions, but it's still alil hard, even if it's for the better, to see the old ones go. I knew what I had growing up as a kid and I see that my kids will not have the same memories, which is ok as we have some and will continue to make even more AMAZING memories...it's just different.
I was able to stop by the dog rescue, New Pawsibilites, where we got Sully from to drop off all of Danny's party donations. They were very appreciative for all the goodies and even enjoyed the photos I left them with Danny, Sully and all the donations. Thank you to all that helped out!
I started my new MS med named Aubagio. It's a daily pill that I have to take only once a day. That alone is very enticing ~ no daily shots or hospital infusions for disease modifying drugs BUT I know how nasty these MS drugs can be. This is a very new drug and I have to say I'm not really jumping for joy with the convenience. My concern is what is this going to do to my system down the road. I haven't seen or heard of a disease modifying drug that doesn't have significant issues down the road. This is all too new and I know they don't know what all to look for or what is going to happen years down the road while being on the drug. My first side effect I can't say I'm too impressed with. The first 15 days I have been on it, I've gained 10 lbs. Well isn't the special!! Of course on my FB support group for the med I have found most of them have all lost weight on it, NOT FAIR! It's all water weight so I'm sure it will be easier to lose, but I really didn't need this. I've worked very hard at not only losing weight (with more that I need to drop, even before this) but I managed to maintain pretty good eating habits over the holidays. I know I'm not a # that shows on the scale, but it does bruise ones ego a bit when that # inclines. I have also started to go to have acupuncture along with Chiropractic adjustments done twice a month. I have found that they are helping :) I am working on starting a new line of "holistic" vitamins to see how my system reacts with those. That to so far so good. Not only does my house smell with essential oils but I've been learning how to use them for more "holistic" way too. It's amazing what you can do with them. I'm more excited with all of that then I am to be on this med. I have another Dr appt with my neuro this week and I'll be talking more in depth with her on my questions and concerns. Prayers appreciated!!
Construction site of the new building Dan is in the works with ~ a multi tenant building. It will house 3 business' and is right next door to our Oshkosh Laundry mat. We already have a prospective renters in 2 of the 3 spots. YAY! If things run smoothly I believe it should be up and running by early to mid summer.
Avrianna went to a dive camp the last week in December, to Ripfest in Indiana.
We surprised her for one of her Christmas presents. She had a great time and even learned a couple new dives. One of the girls she hung out with while there this summer was there this winter too, so that was nice she had a familiar face. Dan drove her down there no the 28th, I had planned too, but with the nurse leaving it made it alil difficult. I was able to go down there to pick her up, and we brought Danny along too. He did great on the 7hr long ride in the van, which meant he was in his chair longer then I'd like, but he loves traveling for the most part.
He was very happy to see his sister!!
She caught a cold while at camp and wasn't able to preform in the meet that they do for the last day to show off what they have all learned from the week, which I'm sure she was pretty disappointed about. We stayed to watch her friends dive and then we were back on the road, but we didn't head home right away.
We stopped in Elwood, IN and surprised Danny's runner Annie. It's was a wonderful surprise and it was so great to see them all again. We even had some of Annie's family come over to visit once they found out Danny was in town. It was great!
All this is Danny's for one over nite stay... he doesn't pack lightly. High Maintenance I tell ya
Dan had the opportunity to go to the green Bay Packer's play off home game against the Dallas Cowboys. They called it the Ice Bowl 2, but the weather wasn't too bad with temps in the 20's and no snow, sleet, or rain of any kind. But with that being said we would rather watch the game in comforts and warmth of home :)
We are off to play Seattle as the Packers won! Woot Woot ~ Superbowl bound!!