boredom · confession · Craziness · friendship · Happiness · hope · lonliness · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · sarcasm · strength · stupid_stuff

Just be you!!

Lately I’ve been realizing that I was always one of those people that worried about what other people thought. I know most of you probably don’t think that, but that’s exactly how I was. I hid it very well  with my “tough“ persona,  but I always wanted to please people. My time in physical therapy rehab changed me completely. I’m now the person that I always wanted to be and if people can’t handle me, then I don’t need them in my life. I’m going to be that tough girl who fights and doesn’t let people walk over her anymore! I used to go out of my way to do things for people that never really cared. And I don’t expect a pat on the back of or even a thank you. But you know those people I’m talking about. The ones who we just have to be friends with when in reality they are no better than us. But for some reason we always thought they were, so we would go out of our way to get them to be friends with us.

I just never thought I was good enough. I thought to make friends I had to buy things, always be the ride, always be the brunt of jokes. I allowed it so it’s my problem and not theirs, but I will NOT allow it anymore. To be friends with me you have to take the good with the bad, and all of the crazy. I’m not going to change anymore for anyone! It’s nuts how it took me nearly 54 years to figure all of this out. Better late than never comes to mind. ☺️

I lie here at night, and when I can’t sleep I just have so many thoughts that go through my head. I just don’t know how to put it down on paper. So I talk text and say what I feel. Half the time I can’t remember my thoughts from the night before. I’ll just blame MS cog fog. LOL I mean if you have to have a disease then by all rights use it as a great blame tool.  It’s those voices in my head that don’t let me quit. It’s those voices in my head that make me strong. It’s that little inner child that comes up to the surface when I need her.

Self discovery that’s really a great thing!

Have courage and be kind…

family · friendship · hope · love · multiple sclerosis · primary progressive MS · Ramblings · strength

There are signs everywhere

When I feel like I can’t go on and I’m at my worst, things happen that pick me back up from the depths of my own hell.

On June 18, 2017 I joined an MS support group on Facebook. After a few months I was asked to be a part of the amazing administration team. 🤗 If not for this group I don’t think I would be holding on to hope or to life. I have met the most amazing MS warriors on the planet in this group which is now over 10,300 members strong.

Today wasn’t starting out to be very good. #Understatement 😉  When I came online I was greeted with wonderful comments to a post on Facebook by some amazing people that I met through the group. Another beautiful warrior messaged me regarding a gift she is sending me. ♥️ And then when I went in to the group, another amazing warrior sister posted a few memes and one of them resonated with me directly to my soul. I felt the need to come here and blog. I really can’t stress enough how this group and all of the amazing MS warrior brothers and sisters help me through every day! Now there are some days where I wish I could jump through the computer screen and junk punch a few of them 😂  But overall 99% of the members are absolutely wonderful. The group makes me feel like I am home.

And now without any further ado the meme…

Now if only I could have her hair. ☺️

Have courage and be kind!

confession · friendship · FUCK · health · HELL · lonliness · love · multiple sclerosis · Pain · primary progressive MS · Ramblings · strength · Wheelchair

MS and the Losses We Suffer

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…

 

anger · Craziness · Darkness · Depression · Faith · family · Fear · friendship · health · HELL · hope · lonliness · love · mindless-thoughts · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · stupid_stuff

Just thinking out loud

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

anger · boredom · Craziness · Death · Depression · Faith · family · Fear · friendship · FUNNY · health · HELL · hope · lonliness · love · medical · medications · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · silly · sleep · strength · Wheelchair

5am… Oh Mr. Sandman!

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

Animals · Depression · family · friendship · health · hope · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · Shelter Dogs · strength · stupid_stuff

Feeling a bit nutty…

I know, what’s new right? I’m needing a change, so first thing I did was pretty up my blog here with a new design. Love how WordPress has so many cool options.

Not sure if I shared that I am yet again a foster fail! I suck at it. My worry is, what if the people who adopt him are not good. What if they don’t like the fact that he likes to sleep under the covers or between their legs? I actually had NO choice this time as my hubby fell in love with him. Hmmm, so this time it was Rog who was the foster fail!! HA!! 😛

Sleepy Boy Gatsby
Sleepy Boy Gatsby

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Yesterday we finally broke down and got new tires my on crip-mobile. They were getting bad, but when you have no dinero what can you do. Thankfully, Sears has that deferred pmt plan so we have 12 mos to pay it off with no interest. We’re heading out of town soon and there was no way I would let us drive that distance on ‘iffy’ tires. Especially not with my kids in the car.

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I’m trying really hard right now to focus on other things and fight off the depression. It’s a long hard battle. I usually come out on top, but this time seems different. I can’t quite put my finger on it. Normally I ‘joke’ my way out of it, but nothing seems funny right now. I know it will pass eventually… at least I hope it will!

Peace Out peeps! xo

anger · boredom · Craziness · Darkness · Depression · Faith · family · Fear · friendship · FUCK · HELL · multiple sclerosis · Ramblings · RANDOM · Religion · sadness · sarcasm · Wheelchair

Oh what a World!

Life can seriously get you down.  My newest issue, it’s the fear to go outside of my own home. I hadn’t left my home for months, and last time I left I had a little bit of an anxiety attack in my car. The day went downhill from there. I knew better but my car wouldn’t start my first thought was just stay the fuck home! BTW, if my words a little off because I’m using the speech program as it’s been really hard to type and honestly the speech programs aren’t what they say they are. I do know proper grammar, But sometimes what comes out on here isn’t what I actually said. And honestly, much too tired to go back through and fix it all so please bear with me!

My biggest issue, with not being able to go outside, is my baby sister is getting married in April at her bridal shower is this month. I would never miss it for anything! They may have to drug me to get me in the car to go, but all good as again I wouldn’t miss this for the world.

Wow! As I just read this over there are so many mistakes, and again I am so sorry for them but I really cannot type right now.

I know I’m not feeling well when I just do not want to get on the computer. Facebook is the last place I want to be right now. For a while, I think I’m just going to do some blogging on here and maybe share Facebook but not get involved too much right now as I really need a break, for me. All I want to do lately is to sleep. Depression maybe, yeah think so! I am working on getting out of my house slowly but surely. I actually went out the day after everything went crazy with my husband, and it was a little easier although I did want to get back home quickly!

Unless you have an anxiety attack, a real anxiety attack you have no idea what happens. I am so sick of the people that tell you to just breathe through it. Well you can’t fucking just breathe Through it! I had to leave my room at night out of my cozy bed and asleep in my recliner as my anxiety gets so crazy I do not want to wake up my husband. Then the breathing gets really erratic, start to sweat, the tears flow, and I just want the world to end! If it wasn’t for Valium I probably would’ve pulled all of my hair out of my head!

I hate how this affects my family, but it’s so hard to just let it all go. I try to keep it to myself, but it’s very very hard to do so. I know I have love I have friends and family, but in all honesty most people don’t want to hear about it. Most people don’t understand what it’s like to have your life taken away from you and end up in a wheelchair. Unless you’re in that situation, you really have no idea.

They say things happen for reason, I think that’s bullshit! If it were true then all of the murderers, the pedophiles, and scum in prison, would be stricken with these illnesses. So I’m sorry, but fuck that bullshit that things happen for reason!

Does it sound like an angry? Well I am angry, what’s going happen when the day comes that I wake up and can’t move,  I wake up and can’t speak. Who is going to help then, God! I don’t think so.

…………

Peace out kids!