I’m not even sure how to explain it. And I truly am sad most days, but today as I opened my eyes I felt nothing. Completely void. I was alone for about an hour and realized I didn’t have any water. I forgot to ask for some before my son left for work. And over that small little thing, I just sat there, emotionless with tears running down my face.
Only emotion I feel lately is anger. Anger because we cannot afford for me to have in-home care. My insurance company, one of the big ones, doesn’t cover that. And God forbid my husband‘s company pays him what he’s worth. He’s given near 20 years for that company. He’s trained more people there than anyone and never got paid for that. And all the while he did his own work as well. And the people he trained. now make much more money than he does. I guess because where he works most people are familied in. Yet my husband has more letters of recommendation and more people that will only work with him than anyone else. He gets calls at home from people for help. But this multi million dollar company can’t pay him enough for all his dedication and hard work.
And yes my husband has taken time off, for me to help me. He uses his vacation time and sick pay he’s never taken off the company without using his own hours. Everyone else is constantly on vacation. But that’s what the higher ups do in my husband’s company they go on vacation and leave the work to the real people who know what their doing. And then someone had the nerve to mention my husband taking time off. Again he uses his sick and his vacation pay so it doesn’t come out of the fucking company. And I pay attention, his colleagues take vacations all the time. But they actually get to take vacations my husband’s “vacations” are usually spent with me in the hospital.
My husband is a good man and the best at the job he does. Like I said it’s not just coming from me it’s coming from stacks of letters I have at home that people have sent him. And I did work with him years ago and many times people called they would only work with him.
If anyone reads this that works with him, cut him some slack. I wrote this only me. Because for 20 years I’ve watched my husband works his ass off but because he’s not an “ass kisser” and honestly that’s what most of those people want. And I’m glad he’s not, that’s one of the things I love about him.
Emptiness, really sucks. You see I can’t get excited about things because I have no way to get up to do the things that might excite me. My family does what they can when they’re not at work. I can honestly say I really need a caregiver. Maybe if I divorced my husband and go on government care that will help me. And the sickest part of that, is people actually have to do that. We are not the richest country in the world. Our system is completely fucked!
Now I’m off to watch some more brain cell killing TV. And that is my life.
Looks like it’s a DVR morning; Law and Order:SVU, Criminal Minds, Grey’s Anatomy. Then back to Netflix to get caught up o Supernatural!
Was up much too early this morning. Bleck 5:30 am comes too fast. We decided that I’ll get up when Roger leaves for work. This way he can get me up out of the bed so I do not have a repeat of yesterday. Did I mention, I HATE MS! We’re wondering if the sudden worsening of my legs etc. is due to stopping the Tysabri. Maybe my body is adjusting itself to not having the medication in my body. Hopefully it will level out soon.
If you need me, you can find me in my bed again. I’ll be the one with three dogs lying all over me. 😉 I’m off as my hands will not cooperate.
The week started on June 18th. We began our week long vacation to 20 Oaks Cottages and RV Park. We met my parental units in Fresno to break up the long drive. Hung out at the hotel Saturday night and left for Clearlake early Sunday morning. We arrived at Steve’s and my sister Kim’s park around 2 pm. This vacation was also a bit of a family reunion. I had not seen my sister Kim for 6 years or my cousins for 18 years. [since my wedding] We all did the hugs and introductions and all that mushy stuff then went to see the lake.
It turned out to be unusually hot for this time of year. [figures] The first two days I went outside and hung by the dock to watch my kids go tubing and swim. It sucked that I was not able to get to the boat or even get in the water, but watching my kids have a blast made it okay. The heat finally got to me and my legs swelled up something fierce. By Wednesday I could not go outside during the day anymore. So pretty much slept that day away. This trip was definitely kicking my ass… but it was a good ass kicking and completely worth it! lol
There are over 200 photos from our trip. It gave me something to do with my cool camera! lol
We left Thursday and headed back to Fresno for the Hotel stay. It was hard leaving the paradise that is is Clearlake, but we had to head home. We left the hotel early Friday for home. It was good to be home, but I missed my family.
BUT, my fabulous week was not over yet. My baby sister and her BF, Don, were coming to visit Saturday. This would be a perfect ending to a perfect week. I got to see my sisters and my brother at the lake and now my baby sister as well. We bbq’ and had salad and tasty asparagus and cookies and ice cream! YUM! We watched Battle Los Angeles. Basically it’s Independence Day with a few changes. Independence Day is a much better movie, but Battle LA gave us a few giggles. All in all it was a great end to a great week!
This week I am paying for all the fun I had, but it really is soooo worth it. My kids had a blast, hubby caught the only fish [was then released], got to see family, took pictures, and for the first time in a looooong time felt some ‘quality’ in my life! It doesn’t get any better than that!
broken hearted… lmao!! No, not going there!! This is not a public restroom wall!
Seriously, here I sit at my laptop updating, playing in FB, getting iTunes ready for hubbies new iPhone. I just did the kids breakfast dishes and got some jewelry things cleaned. Now what? I’m staring at my blog screen with nothing. Roger will sometimes ask me what I’m doing. Well, just ran a marathon, went grocery shopping, took the kids here and there, did laundry, etc. Then we just laugh. I used to do all of this, minus the marathon! lol I so miss doing all the boring irritating things.
So, here I sit deciding what wonderful things to do. I can go back to bed and watch tv, or go sit in my cool lift-chair and watch tv. Or, I can sit at my design table and play on my computer. hmmmmmm Decisions, decisions. I think I’ll go medicate and lie in my lift-chair and watch movies or something. Oh the life a cripple!!
I’m not so much into the Ampyra. Tried it for over 5 mos and sometimes it seemed as if my legs were weaker. Now this does not mean it will not work for all, just not so much for me. I had high expectations, but srsly, it is more for the less severe forms then the progressive forms. Might be only my opinion, but whatever. I know my MS and it knows me.
I really wanted it to help, but oh well whatcha gonna do. Keep waiting for them to finally get a useful medication for the serious progressive forms. I think that finding help for us would really help the less progressive forms.
So I wait, and pray that they find something for PPMS before I get so bad nothing will help.
On that not, off to watch ‘White Girls’ and omg they crack me up. Love the Wayans!!