Archive for the ‘love’ Category

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Please remember to take care of our planet! She truly is the only one we have. We can fix what we’ve broken.

So let’s all make a pledge to take better care of Mother Earth!

Peace out

 

So much this!

Posted: April 14, 2017 in family, love, Ramblings, sadness, strength
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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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Facebook has brought me together with some fabulous people who battle the MonSter with me. Heather Leffel is an amazing young woman who shares so much of herself and of the struggles we, fighting MS, go through. Recently she did a video on “MS and the Losses We Suffer“. Together, with Kate Milliken, a video was compiled of excerpts from people suffering from MS [all types] and the losses they have experienced.

I am honored to be a part of this amazing project! I believe the Universe sends us messages from time to time, when we truly need them. I have been going through a very rough time as of late. I was losing hope… Then, BAM, the finished video showed up on my FB feed. As I watched it through my tears, I felt the hope returning to my soul. I was so inspired by those who shared their hearts.

So, without further ado…

 

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

I know it’s hard to choose, but who SHOULD be with Elena? Everything Stefan has done, he has done for Elena. Everything Damon has done, he has done for himself, including screwing up Stefan and Elena’s relationship. He’s just so cute when he does it. Hard choice as they’re both so easy on the eyes.

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Caroline, Caroline, Caroline! Who should she be with? They’re not giving us much choice since Klaus is now off to his own show, “The Originals”. But OMG… the chemistry between the two [Caroline & Klaus] is amazing. Talk about having sex with your eyes. Tyler, not so much. IMO. So whatcha think?

Nights like these are beginning to piss me off. Mr. Sandman must have lost my freakin’ address. My night has been watching movies and trying to sleep.

I realized after reading yesterdays blog, I really haven’t gotten out of bed for a while now. I’ve been thinking about the ‘why’ I haven’t. If I am truly honest with myself, I know the reason… “What’s the point?” I could get up and sit in my wheel-chariot, but then my ankles become kankles, and I really hate that. I’m no longer able to drive, so I can’t just get up and go out. Unless I have help, I can’t even get out of my bed to get in my chair. So, again, “What’s the point?” I feel safe here. I really hate being out in public. I’m in a body I hate, and frankly I don’t like people. I’m not me anymore.

Some might say I’m feeling sorry for myself. Well DUH! I’m fucking human, of course I do at times. Anyone dealing with a progressive illness is lying if they say they never feel sorry for themselves. It’s human nature. I also feel anger, sadness, emptiness, loneliness, and the list goes on. My body is broken and it’s messing with my head. I try so hard to find the ‘positives’ of life, but when you can’t even sit up in bed without someone pulling you up by your arm, positivity is hard to find. Then the fear sets in. Will tomorrow be the day I wake up and my body no longer moves at all? Every night that thought crosses my mind. I’ve lost 2 dear friends, younger than me, to complications of PPMS. It’s fucking scary. And please don’t anyone say it could be worse! This IS my ‘worse’. Death would be easier. I’m so tired of fighting this all the time. But, I’ve never been a quitter, so death is not an option. But, I’m just so fucking tired!!

I know some of my emotions right now stem from the loss of my mom. But honestly, there’s nothing wrong with telling it like it is… the cold hard truth. So many people with with debilitating illnesses keep their inner thoughts to themselves for fear of what others might think. Yes, I think of death, and how much easier it would be. Will I go there? NO! But, the thought is in my head at times. It’s much healthier to talk about it then keep it bottled up inside. People with disabilities unite!! It’s okay to be sad, it’s okay to feel sorry for ourselves, it’s okay to be angry as hell. We need to vent it out in order to heal our minds. Honestly, if the ‘healthies’ and/or others don’t like it or want to hear it, fuck them! They’re not worthy of us in the first place. You really do find out who your try friends are when illness [serious illness, not a cold 😛 ] strikes.

People tell me all the time to think of the good things; family and my friends who love me. DUH, I know this, but I’d also like a little quality of life. No one but me lives in my body. No one but me feels my emotional and constant physical pain. My body no longer works, I can’t do anything without someone there to help me. My independence is gone. When my kids are in school and hubby is at work and I’m home alone, it’s terrifying. I can’t get out of bed or do anything for fear of falling and hurting myself. It feels like i’m in jail.

There’s a line from one of my favorite movies, Last Holiday, that sums it up. “I would like to be cremated. I spent my whole life in a box. I don’t want to be buried in one.”

I know kind of depressing, but my feelings in a nutshell.

 I’m not getting better. I will keep progressing. Scary part is that progression at this point is heading towards total paralysis. Oh joy!

I am looking in to a new neurologist. After 16 years with the same one I feel he’s getting a bit lax. I’m also looking in to a wheel-chariot that has a reclining and raising option. I’ve been looking for clinical trials for PPMS, but most say the patient needs to be able to walk 20 feet to qualify. Are you fucking kidding me. I even looked in to a trial for incontinence, and didn’t qualify. SERIOUSLY!! I’m the incontinent Queen for fucks sake. If they can help me, they can help anyone! 😉 There’s all kinds of new medications for RRMS. Shit, if they could find a medication for the progressive form, that works, they could control RRMS completely. Get on it you researching fools!!

Well peeps, it’s now after 6am. Think I’ll find another movie to watch. Preferably something boring that will put me to sleep. Where’s my ole economics professor when I need him. lmao

A quick note, I’m reading some cool spell books. Who knows i may be able to cure myself. I believe in the power of nature and balance. Damn, I’ve tried everything else, it can’t hurt to give this a go. I’ll keep you posted.

Ta-Ta for now. Love and Light