Friday, January 29, 2010

Too short for a title.

Received negative news yesterday, but like my MS, I refuse to allow it to ruin today or the weekend. I have faith that everything will work out. Whether it be the way I want or not. I try to focus on the fact that there are so many people who have a tougher road to walk than I do. MS sucks, but it could always be worse. Although right now it's hard to focus on the positive when you cant find it. I'm sure I'll trip over it soon, but right now things seem a bit glum.

So, focus on my blessings, focus on my blessings is my mantra for today. Husband, Family and friends. Oh, and my furry critters too!

Thursday, January 28, 2010

OK now I'm

pissed. We're talking big time, full blown even angry at God PISSED. I just received word that the State of California in their infinite wisdom decided to deny my industrial retirement. Even though their own MD said I couldn't return to work due to the injuries. (This is on top of the MS). I have just had it. When am I going to get a freaking break? Sure, I can appeal. But I have to hire an attorney to do that. I don't happen to have that kind of money lying around.

Work says I can't do the "essential duties" in a wheelchair so I can't come back to the same job. However, I CAN come back to a job with a drastic cut in pay, which won't even pay my mortgage let alone other bills.

So what are my options..........

Another day in paradise.....

Woke today to a beautiful day in the SFV. Clear blue skies with a crispness in the are that reminds us that winter is still here. Today we head back up to the mountain. No snow up there, but the high is in the 30's. I've enjoyed the few days here. Did too much and pushed to hard as usual, so I'm tired. However, I think it's a good tired. My left leg is bothering me a bit, but nothing worth complaining about. I can't believe we are almost at the end of January already. I think time goes fast for me because it's based on Doctors appointments. One right after the other. I'm a bit peeved at my Neurologist right now. Seems he can't make a treatment decision without consulting with someone else. Which waists my time and money when I see him. An hour each way to see him, a 15.00 co-pay to be told he wants to consult with UCLA first. Before I go down for me next appointment I'm calling to see if he "consulted" with them and has determined a treatment plan. If he hasn't I'm not going back to see him unless he does.  I wonder why physicians don't seem to understand that our time is just as valuable as theirs is? Oh well, just another day in paradise.

Monday, January 25, 2010

Who am I?

Sometimes I feel as if I no longer know who I am. MS has changed me so much over the past 3 years. I used to identify myself by my profession, my family, my children. Well, now the children are grown and living thousands of miles away as do my parents and sister. I can no longer perform the "essential" duties of my job as I was recently told. So, who am I? I know I am a person of worth, but I feel as if I am lost. Not knowing which direction to turn. As if I am in a carnival house with smoke and mirrors and every direction I take leads me to a more distorted view of myself.

Thankfully, I have a wonderful husband who keeps me grounded. Yet, I feel at loose ends, wondering what my purpose is.

Saturday, January 23, 2010

Rantings of a madwomen

WHY, WHY, WHY is the statment that has been running through my head for the last week. I'm frustrated with my Neurologist who now wants to consult with UCLA before he decides what the hell he's going to do with.me. I wish he'd just make a freaking decision. This is the third office visit in a row where he's been indecisive.

Meanwhile our insurance copayments for our drugs doubled. When your on 7 different pills each day PLUS your injection it's expensive. I've tried to wean myself off some of the drugs, but I can't handle the symptoms they help mask. So now my co-pays are almost 250 a month just for the pills add another 30 for the injections and we're pretty close to 300 a month. I know, some pay more than that...but as this is all about me today....only what I pay matters. (See I'm ranting).

Then I wonder why I take all the medication, it's not going to make the MS go away or improve my balance. I took a facer today in fact. Landed literally face first. I'm lucky I didn't break my glasses or my nose but it looks like my chin is going to have a rug burn on it. Tomorrow I may find the humor in that.....but not today.

I want my life back. I want the Kimberly I was 2 years ago back. (Well maybe not all of her, just the good parts). I want my independence back. I want to hold a garage sale and sell off all of my DME...scooter, electric chair and two wheelchairs. Not to mention the shower chair. I don't want to have to use these things until I'm in my 90's. I want, I want, I want. I sound like a 9 year old don't I? 

I just want ME back. Sometimes I think I'm forgetting who I am because it's always about the MS. Every activity, every action is dependant upon the MS and how I feel becasue of it on any given day. So, today I feel frustrated. I want to go romp in the snow with my dog and husband , but, I can't. Why? Because the MS has made my balance very iffy today, so even with a cane I'd fall. I just can't imagine myself to playing in the snow in the chair, What the point of that?

So, I'll sign off now and have my pity party. I will only allow it to last this afternoon becasue I refuse to let MS beat me and crawling into be with my covers over my head works for one afternoon, after that, it's just giving up.

Sunday, January 10, 2010

The holidays

Beauty of Gods work
KylerMakayla

A happy Grandpa Mark with the kids and the blanket I made Kyler for Christmas.
Mark and I
I know shame on me. I haven't blogged in over a month. Well, I have, just not here. Life has been very busy over the past month. We decided to take a trip to Missori to see the folks and Kentucky to FINALLY meet our grandson. We drove because LITERALLY everytime I've flown with my wheelchair it's been broken. 2000 miles each way. YIKES. I don't know if we would make that drive again. Driving 12-16 hours every day was a killer. Of course, seeing the family was totally worth it. I was smart and paced myself and my MS actually behaved itself. It was when I got home that it kicked my hind end. The top picture above is one I took on our way back home. On our drive home we had snow falling from Kentucky to just outside Kingman Arizona. I took this picture just before the California Border. It felt like God was welcoming us home. The rest are of the grandkids.

Since I've been home MS has reared it's ugly head. Go figure. Leading to an EEG and an L.P. last week. still have a bit of the spinal headache. UGH. I see my neurologist on Weds. so I'll let you all know what he says.

I promise I'll start blogging HERE more often!

HowIfightMS.com