Archive for the ‘family’ Category

  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.

Peace ✌

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 I guess it’s better late than never. 2018… The only change for me will be that I will progress. I’m a realist, I have to be. I still hope every day. Yet, hope can become very paralyzing.  As most people now, I was diagnosed in August 1997. My second opinion specialist said it began in 1986 and that I am primary progressive. In reality I’ve had this my whole life. I was genetically predisposed for it. I can look back and see issues I had from the time I was little and through my teen years into adulthood. It lay dormant for a very long time. I guess when it showed up, it needed to make itself known by literally taking away everything I held/hold dear.

But, seriously, what you gonna do? I literally can’t “do” anything by myself.  I try to keep A happy face because nobody wants to hear the truth. And that’s OK, I probably wouldn’t want to hear it either. So really, what are you gonna do when you end up like this. Basically you just have to take it. I cry so much I could end the drought. 😂  No, seriously, I could. LOL You just have to find the humor.

It’s just that some days there is no humor to be found. It’s been four years and three months now that I have been confined to a bed. I get up for doctors appointments and for showers and that’s about it. The pain is so intense that if I sit for too long… I’m better off in bed.

That’s all I have right now. Happy fucking new year! I’ve just got nothing.

Peace ✌️

 

 

So much this!

Posted: April 14, 2017 in family, love, Ramblings, sadness, strength
Tags: ,

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On March 7, 2017, while holding his hand, my daddy took his last breath. I can’t express what the loss of my dad has done to me. Even though we lived a few hours away from each other and I didn’t get to see him as much as I would’ve liked, thanks to my illness, I always knew he was there.  And somehow that gave me strength. I knew he was just a phone call away… unfortunately they don’t have cell phone service in heaven.

Right now it’s very hard with all that is going on in my life. The Home Depot fiasco as well as all of my medical issues and all the bills that  are taking over our lives. And I can’t seem to find my strength to deal with it and take care of it and not let these people walk over me.  My dad always taught me to be strong and always fight for what you believe in and what is right. And I know I have it in me, but I just can’t seem to find it right now. I can’t just pick up the phone and hear his voice.  I just want him to come back. He would give me the strength and the peptalk I need to not let these despicable people hurt us.

My daddy was the best person that I’ve ever known. I’m not sure, I’m just not sure of anything. I miss him so much. And while it was the hardest thing I’ve ever done, I got to be there  holding his hand when he finally found peace. ❤️

I miss you and I love you dad. We all do!

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MS is an evil bitch! For the first time in a very long time I’ve been feeling “happy”. I haven’t felt this way in quite some time. I learned many years ago to downplay my emotions. It always seemed to go bad when I’d mention the “H” word. lol Like the other shoe would drop if I even thought of it. And, BAM, it seems to be par for my course. The MonSter, that is MS, always jumps in to harsh my mellow. And the bitch is jumping on a trampoline right now. I’ve been doing pretty good. Home Depot is going to get my window issues fixed [knock on wood] and life in general is good. So, I should have expected something to happen. I always expect the worst and then when the best happens I get giddy. 😉 I know that seems like a bad way to look at things, but for me, it keeps me sane. Well, I tried looking for and expecting the best this time, and damn if MS didn’t pop up and mess my shit up again. I was actually feeling less fatigued and wanting to do things. But, no, she had to pop in and remind me of my ‘disability’. I’m feeling drained and out of sorts. Depressed and tearful.

I hear the saying, I have MS, but MS doesn’t have me, all the time. But, um, nope… MS does in fact have me. For me it’s all about how I handle it. I can fall apart and give in to it, or keep fighting. I chose to fight. I have PPMS [primary progressive]. My MS is no longer ‘invisible’. It’s out there and in your face visible. I am in the 10% group with my PPMS, and many have no idea there are different types of MS. This page, here, quickly explains the types.

Beotch!!

Beotch!!

I’ll get through this and keep pushing forward, but sometimes it gets so frustrating. I’m going to throw my pity-party for now, and everyone is invited! 😛

my mantra

my mantra

Now I am going to try and find that ‘happy place’ again. I may have lost the battle to MS, but I will win the war!!

Peace!!

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Have a fun and safe Evening! Keep your furbabies safe and away from opening doors.

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Last night was the pumpkin carving party at Don’s house. Here are the wonderful pumpkins that were carved. It was a fun time for all.

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I started out dressing like a Vampire, but the wig cap/wig gave me a headache. My fitted Vampire teeth were a pain in the mouth! lol

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So, ended up as a Witch. The lace on my hat is over 90 years old. It was my Nana’s. There is also a black rose with it. This is my favorite Witch hat. Yes, I have more than one. 😛

WITCHYME

Hat made in 2008. Still my fav!!

Hat made in 2008. Still my fav!!

My fabulous make-up was done by Steph. She made me look damn good for a 51 year old. lol

Even with the pain, I had so much fun! I have let fear, being self-conscious, and embarrassment from my illness stop me from doing so many things. I know there will be times when my condition will keep from doing certain things. It makes me sad to not be able to be ‘normal’. One thing is for sure; I am blessed with a support team that always has my back. They never give up on me, even when I give up on myself. I am one of the lucky ones!

A Happy Halloween to all!

Love and Light!

Things I can’t do anymore:

dress by myself, get out of bed, go to the tinkletorium, drive, walk [duh], sleep on my side, lift myself up, use the stove/oven, go out in the sun, put on shoes, garden, laundry, vacuum, travel, cook, hold my bladder 😉

Things I can do:

sleep on my back [boring], watch endless amounts of tv/dvds/netflix, use the computer, manage our money, sleep [I’m the pro], love, hope

I know I’m in a state of limbo right now. Not sure what to do or how to do it. Knowing is the first step. Coming out of it is the hardest step. I’ll get there…

Love and Light

“Knowing you’re falling is the first step to getting back up”  – T Radford