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One minute at a time…

When my alarm goes off at 9 AM to remind me to take my morning medication, I grab my bed remote sit up a little bit, take my meds. Then, normally I will call to my son to bring me a cup of coffee and try and start my day.  However, for the past week or so my alarm goes off, I will grab my remote to sit up and take my meds, and then I just lie back to go to sleep. I was in that mode of, why does it matter if I wake up right now, the same thing that happened yesterday it’s going to happen today so who cares. When you’re bedridden, one day rolls right into the next. Every night I go to bed I know that the next morning I will be in the same place doing the same things for the whole day.

Then, finally, at around 1 PM I told myself and to pull up my imaginary bootstraps and wake the hell up. It was really hard to do. I literally saw no reason for me to actually awaken. But, I did, and I made it through this day.  Minute by minute is the only thing I can hold onto. Any longer than that and I’m not sure what would happen…

The one thing I do know and I am very sure of… I AM an MS Warrior!

Have courage and be kind!

 

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Positively unsure…

I’m positive that I’m unsure about everything right now. Day in and day out I lie in this bed and wonder if things are really going to change. When I say being positive is new to me, it’s a true story. I never realized that it’s very hard to keep a positive attitude. And when your life takes a turn like mine took two decades ago, it’s fucking hard. When I found help on February 23, I believed my life was going to change for the better. I’m still hopeful, but it’s much harder than I thought it would be. While I can move my legs and feet a little bit, I still am unable roll on to my side. I cannot sit up without something supporting my back. As I sit/lie here all I have this time. I’m looking at this blank page before me with tears in my eyes not even sure what to say. I miss the girl I was. I’m so angry at everything and everyone and at nothing and no one. Half the time I don’t even know what I’m saying or thinking anymore. I’m alone and I’m lonely but I don’t want anybody around me.

Most days I just want to scream at the top of my lungs for no apparent reason. The highlight of my day is watching the hummingbirds drinking the glorious nectar that keeps them going. Sugar water, go figure. I can stare at them and keep staring praying that they won’t fly away too quickly…

Is it so wrong two want to escape from this prison that is my body? I don’t want to sound negative or sad but nothing really is changing. We can’t afford a caregiver and I can expect my family to spend every free minute they have aside from what they’re already doing to help me. The whole physical therapy aftercare is a fucking joke. I can only call so many times without a return call. And in reality, if they do call I have no way to get there… So does it really matter. My husband cannot keep taking off as much work as he already does take care of me. My kids work and they shouldn’t have to take care of me. They have done that their whole lives already. And then there’s the pain… the pain that never goes away. The physical and the mental pain Is exhausting. I’m trying so hard to stay strong to keep that positive light flowing.

No one understands that when just sitting like a normal person causes so much pain, it makes a person not want to get out of the bed. The minute my hips go to the proper sitting position the pain latches on and won’t go away. My legs have plopped the side [frog legs] for over four years [11/2013] and when my hips rotate it’s excruciating. Pain meds, muscle relaxants, cannabis, CBD, nothing stops it. I’ve l earned to grit my teeth, quietly let the tears flow, bare it, and warrior on because I have to! I have orders to get ultrasounds on my legs to check for clots, an order to have x-rays of my hips and lower back to check for arthritis aside from my degenerative disc, an order for a mammogram that I’ve put off for the last 2 1/2 three years. Breast cancer took my sister from me I miss her so much…

And I digress. So as I said, I have all of those things I need to get taken care but have no way to get there. I know that my husband will take another day off work to get me to these appointments and that is why I don’t want to make them. It’s also going to suck big hairy donkey balls because of the pain that’s going to happen when trying to get me out of my wheelchair to lie flat for the x-rays. I hope they have some strong men working that day and maybe even a chaser of morphine.

On the outside looking in people probably think I’m lazy. Although I don’t know how I can do much more from my bed. I fought for the last two decades against MS and it didn’t change a thing. I Just kept progressing to where I’m now. But don’t worry, I’m still going to fight and do what I can from this bed to keep going.

I’m going to put my arm weights on every day and do my exercises. I’m going to have my family help me move my legs when they get a free moment. I’m going to keep moving my legs as much as I can even if it is only a little. I know right now I can’t move them very much, but with hard work it can only get better. Or it won’t. But even in the dreary depressed mood I am in at this moment, I will never quit. I will never end up in the hospital again after trying to take my life. [2/2017] I will never end up in the hospital again contemplating taking my life. [2/2018] Because what that month of physical therapy DID give to me was a glimpse in to what might be. I know now I was just a body in bed but while I was there I learned the tools to better myself. I have all the paperwork showing the specific exercises; I know what to do. And even if nothing changes, no one can say I didn’t fight and fight hard! One thing I learned and I’m still learning is there truly is something beautiful in every. I didn’t see that before. That’s how I make it through now. As I’m reading through this I’m not even sure what I’m trying to say. But, I’m in here and I’m saying it and that alone is strength.

Have courage and be kind.

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The Strength Inside – part III

All about Dr. Hottie! His name is Dr. Thomas Nasser, DO. This part is about how he helped me start my new journey.

By now I had seen Dr. Muscles and awesome Dr. Pretty. [the psychiatrist] I truly need to find out their real names. All of a sudden the curtain opened and this very attractive man walked in my room. He introduced himself as Dr. Nasser. I looked at him and apologized because I told him they they sent me the wrong Dr. Nasser. You see his wife, Dr. Susan Nasser, is my primary care doctor. He laughed a little and said,” you must mean my wife.” All I could think of was they must be the power couple in the valley here. He explained that he was a pain management specialist and that he ran the Rehabilitation Renter at Palmdale Regional Medical Center. He had been told of my plight by Dr. Muscles. He wanted to ask me if I wanted to go to his rehab to get help. Again, for those of you that know me when I know something, I’m always right. I explained that I have primary progressive MS and there really isn’t anything he could do for me. Again, he just smiled and basically he told me, well then there’s nothing to lose right?

In this moment I had so many things going through my head. I was drugged up on morphine, and everything was still hazy about what had happened the day before. Hell this might’ve been the same day I truly can’t remember. All I  could think about was being told for so many years there wasn’t much I could do once the progression started. The new medication, for the progressive forms of MS [Ocrevus], I could not go on. Something about being too disabled. I will talk about that another time. All the while he just stood there waiting for my response.

I looked at him and said. “I don’t think you know what you’re dealing with, but yes, I would love to try it.” I told him that my insurance probably wouldn’t do it, and he told me not to worry about that. When he left the room I was scared. The pain I have on a daily basis is about a 10+. But As my fellow MS’ers know we learn to deal with it. I knew doing this was going to be hell-a painful and hell-a hard. And there was that little asshole voice saying ‘it won’t work.’ And, again, I was scared. No, fuck that, I was PETRIFIED!! Could I deal with the pain? Could it, would it, really work. NO, it won’t work!! Nothing will help!! That damn voice would not shut the fuck up!! Then somehow… from somewhere… a strange feeling overtook me. HOPE!! Real hope. A feeling that I had lost many years ago. You see hope was my mantra. Then, hope became paralyzing. Hope became a word that made me cry. But, at this moment, hope was back. I’m not a great writer, so bare with me as I try to explain the feelings that took over. I see/feel dark and light. Dark and light clouds, if you will. My cloud was pitch-black and gloomy over me. I felt the cloud ‘open’ and light enveloped me. I was shaking and tears were streaming down my face. Fifty-three years of negative forces went flooding past me and a rainbow of positivity swept over me. Maybe, just maybe, this would work. Maybe, just maybe, I could get my life back and save my family.

Now the real journey begins…

Have Courage and Be Kind

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‘Have Courage and Be Kind’ is a beautiful quote from this 2015 version of Cinderella.
Craziness · Darkness · Death · Depression · dreams · falling · HELL · hope · HORROR · multiple sclerosis · music · nightmares · primary progressive MS · Ramblings · RANDOM

I’m Alive…

Story Of The Year – I’m Alive

My amazing daughter Ashley makes me some awesome mixed cd’s. This song resonates deeply with me. It’s about transformation. Don’t want to spoil it for you. It’s a great video and very powerful on all levels for me. While his transformation is not mine [ahem], my MS feels like this to me. It has taken over my body and soul and I’m ‘fighting’ to stay alive in a prison that is my own body.

The words are so powerful!

******************

“I’m Alive”

In the night I sit alone
Lifeless to the world I know
Faith loss long ago
In this graveyard I’m calling home
Carved into the stone
A diary of broken bones and
Words I should’ve known

But this grave’s too deep to ever make it up
I’d do anything, anything
Just to feel like I could reach the ground
I’d do anything, anything now
To spread these wings somehow
I scream these words so loud
But they never make a sound

I’m alive
But I’m barely breathing now
So place my heart under the ground
Lay me down
I’m alive
But I’m barely breathing now
So drag my lungs into the ground
Lay me down

In the night I sit alone
The stars rain on the world below
Beg me to explode
But these dreams I keep are nowhere to be found
I’d do anything, anything just to stop
This weight from pressing down
I’d do anything anything now
To spread these wings somehow
I scream these words so loud
But they never make a sound

I’m alive
But I’m barely breathing now
So place my heart under the ground
Lay me down
I’m alive
But I’m barely breathing now
So drag my lungs into the ground
Lay me down

Deep enough so that I’ll never feel again
Far beneath any chance at breaking skin
I’m giving in
All the promise of smiles and happiness
That’s a dream I’m not willing to admit
I’m not ready yet
To face regret
No I’m not ready yet
I’m not ready yet
No..
No..
No..

I’d do anything now
So spread these wings somehow
I scream these words so loud
But they never make a sound

I’m alive
But I’m barely breathing now
So place my heart under the ground
Lay me down
I’m alive
But I’m barely breathing now
Tread my lungs into the ground
Lay me down..

******************

Peace

CD · Celebration · dreams · fun · music

I love you Barry Manilow!!

I’ve loved Barry since I was a teenager. Such emotion in his music and complete love. I just added a music player to my blog. It’s on the bottom left side. The first song, of course had to be, I Made it Through the Rain. The main reason for my blog’s name. I was starting out blogging and listening to Barry in my iTunes. Then BAM, it hit me! Making it Through the Rain. I haven’t ‘made’ it yet, but I am ‘making’ it through the rain.

Hit play and make your heart happy!

Many moons ago I was invited to see his pre-concert, concert at Sony Studios, for his upcoming tour. It was invite only with maybe 100 people. They had it known, unbeknownst to me, that I would get up and sing, Can’t Smile Without You, with Barry. I am sad to say I did not do it. My one and only true regret in my life. 😦

 Oh how I wish I had said yes. I was wearing leg braces and using crutch canes. I was petrified about falling and having no confidence in myself, I felt I had to politely decline. **bashes head against wall…

If only life had a re-do button. Sadly, it does not. NEVER, say no to something you are able to do, because the chance may never come again.

But… The evening was so amazing. I still had the time of my life. Just meeting him for the quick minute is a moment I will never forget!!

Thank you Desi for taking me and thank you Barry Manilow for your amazing talent. A true fan for life!!

And look…

To Tracy with love

barry

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Wheel-Chariot of my dreams!

Quantum Rehab
Quantum Rehab

This is the chair I need, want, and must have! It has a leg elevating option which will help my ankles not to swell. It reclines and can elevate a few inches to help reach things. I’m working on getting this sometime in the next few months. I have to jump through insurance hoops, but I’m used to that. MY neurologist is sending the store my diagnosis report, then they get with my insurance to see how much, if any, they will pay. Once that is done a representative comes to my home to get measurements, etc.

Insurance will not help much. They feel a wheelchair only needs to get you from point A to point B. It does not need elevating legs, recline, or elevation. They call those ‘luxuries’!  Are they fucking kidding me!! It’s a ‘luxury’ to elevate my legs, to recline, and make it easier to reach things? WOW!! I guess it’s a luxury to be crippled too! grrrrrr I didn’t ask for MS so why is it so hard to want to be able to have a chair that helps me live my life with MS.

I’ll do whatever I have to, to get this chair. I spend my time in bed as the chair I have is a basic model. After 20 minutes of sitting my legs swell and my lower back is in pain. This ‘new’ chair will allow me to get up and get going. I will be able to make my jewelry again because I’ll be able to elevate my legs at the table. I haven’t made anything for so long and I miss it terribly. If I have to, I’ll sell myself on the boulevard… Okay probably not, but you get my point. lmao I really need this chair. When I found it whilst surfing the net, I started crying. I saw my ‘new’ life with this chair. I want an orange base for MS and animal awareness. It will be so cool. I feel like a little kid waiting for Christmas!

I’m  back to getting the excess weight off again. I figure, if I have to be in a wheel-chariot, I’m going to be a hot bitch in a wheel-chariot! I’ve never been heavy. So this weight gain is very depressing for me. I look in the mirror and cry. Why I don’t look in the mirror much. I know if I lose the weight it will be easier for me and those who help me on a daily basis. I even turned down cherry cheesecake danish today. OMG, it was not easy! Paleo and gluten free is my lifestyle. I will do it this time… I have to.

Love and Light

dreams · family · Happiness · multiple sclerosis · primary progressive MS · RANDOM · stupid_stuff · Wheelchair

What would make life easier for you?

The cure for MS would make life easier, but since that is not available, what would help?

I was asked this recently, and it’s a hard answer. So many things would, but what is the number one thing?

So, I’m compiling a list.

—————————–

  • tile or real wood floors [easier for rolling]
  • all cripple access doors [wider]
  • in home physical therapist
  • wheelchair that has a raising option and comfy seat and can lift my legs when they swell
Want mine all black! 😉
  • Beach wheelchair so one day I can see the beach again
a girl can dream
  • hand controls for my van so I can drive again
  • interior paint for my home so being in here all the time makes me happy [sounds strange, but when housebound having a nice home really helps]
  • shit… a whole interior house remodel including all doors interior and exterior! lol
  • body transplant – just thought I’d throw that in! lol
  • tummy tuck – seriously or not

As I read this over it all seems so, well, stupid. I really have no idea of what I need or what would help me the most. I wish it was that easy.

Right now it’s my weight that is killing me. I try so hard and nothing works. Someone close to me, put their hand on my belly and asked me when I was due. My heart broke right then and there. I know, I know, let it go… easier said then done! I can’t shake it. I’ve come to realize it’s the weight gain causing me the most pain/depression.

Blah, blah, blah…