Archive for the ‘Darkness’ Category

Really, why do we? Why do so many put their thoughts and emotions out the for the world to ‘read’? For me, it breaks the monotony of my daily bed-ridden life. It allows me to bitch, if you will, at the world and not my family. lol I have a story, it may not be much to some, but it’s my life. I hope that in some small way others in my position can find some hope, or at least have a laugh.

Even in my more depressing blogs, I think it helps others to know they are not alone. It’s ok to cry, scream, and lose it… once in a while. 🙂 We don’t always have to ‘hold’ it together and be strong every second. Sometimes a good cry is cleansing for the soul, and I’m talking ugly crying! lol

I also hope to bring awareness to others on how we can fight back against those who try to hurt us. Hospital treatment and the treatment we sometimes have to endure by big companies, i.e.; Insurance Companies, and big Pharma. We have to be tough and find our inner strength so these people do not run over us like we are nothing.

We are the strong. We deal with more in one day than most deal with in their lifetime. We smile through the pain, the losses, and the inhumanity of some. So believe it, we are the true Warriors!!

There are days I want to give up. There was a time, not long ago, I tried… When I awoke I was angry, I wanted to be free. Then I realized, maybe I am here for a reason. If I am able to help even just one person, maybe that’s why I am still here. I’ll be honest, the thoughts linger in my head every day. I fight like hell to never let them ‘almost’ get me again. It has nothing to do with any God or higher power. It’s my will, my power and inner child that keeps me going. We all have the inner child of strength. I truly hope you can find yours and hold on tight.

Love and Light to all

I’ve just recently started blogging again. It’s helping me with trying to end the monotony that is my life. While I hope people read and maybe take something away from my blogs, I really do this for me. It helps get those nagging thoughts out of my head. I know my blogs may sometimes be depressing, but that comes with life and MS.

New news, Home Depot is sending Jerry [new guy] to fix the lil’ latch/clip that broke the first day. Did Briana call me, of course not. Passing the buck again!

I did get some good advice. A ‘friend’ told me to get the license numbers of the contractors they hired. I am also going to get an estimate of the stucco damage they caused all around the windows and doors. Their workers also lost a few of my window house alarm magnets. Will be getting an estimate for those as well.

Since the time of Mark Nord, they’ve been talking compensation for all they’ve put us through. Briana said she’d be talking to Mark about it. Right, the guy that blew me off for months then sent Briana my way. She and I have lots to discuss after tomorrow. Fraud, lies, rudeness, just don’t!!

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Peace out my peeps!!

Living and existing are two very different issues. I believe most people just exist. I find this quite sad. In my situation I am only able to ‘exist’. How I wish I could truly ‘live’.

My life, ninety-five percent of it, is spent in a bed. I’m a prisoner in my own home/body and I didn’t even commit a crime. Constant back pain and edema make it hard to ‘tool’ around in my wheelchair. We can no longer afford a caregiver, so most days I’m on my own. Thank the Universe for my rescue pups.

If I sound miserable… it’s probably because I am! lol I know, not funny. The old adage, you don’t get it until you get it, is so true. I’m a realist…I have to be. I’m not going to get better or go in to remission. If I am unable to try the new medication, Ocrevus, I’m fucked. I talked to a department of my Blue Cross ins. regarding the medication and if they will cover it. I was told no at my neurons office, but figured i’d go straight to the proverbial horse. It may not even work, but I have to try. But, like my one blog says, I may not even qualify for the medication. That’s on the maker of the medication.

It is all bout the numbers, not our well-being. It’s more important to keep the percentage up then to get the medication to those of us who have severely progressed. The GREED that is America!!

For those of you [healthy peeps] reading this, just existing, get the fuck up and LIVE!!! Go on that trip you keep putting off. Wear that ‘dressy’ outfit to the grocery store. Play hooky with your kids and get to the beach or hit the park. Get out of your ‘safe’ zone and go skydiving… you know what I’m saying. LIVE PEOPLE!!! You do not know what tomorrow may bring. I NEVER thought I would get ill. I wasted so much time. Please, I beg of you, don’t make the same mistakes I did. If you can do it, do it now…

Peace out!

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They promote this new medication for MS as the first medication for the progressive forms of the disease. Really? I don’t buy it. I was not able to qualify for any of the trials because,  as they explained, I am too far progressed in my disease. So, I was waiting for it to come out on the “market”. For my last blog, as you know, insurance won’t cover it, for me and many others. But as I did more reading I realized that not everyone will qualify for it either way. If you are too far along in your disease you will not be able to get on the medication. Why, because we will screw up their percentage;  Bring down the numbers. So really this new wonderful medication they are promoting all over the place is nothing more than another medication for basic MS.  It’s not a drug for the progressive forms if we can’t and/or don’t qualify for it while having the progressive form.

For me, being someone that truly needs it, it’s just another big hype of another medication that won’t help me. For those that are able to be on it, I wish you well and hope it really works for you. For the rest of us that are truly progressed, may God help us…

But, don’t hold your breath.

For over a year I have been waiting and hoping for this medication. The very FIRST medication for those of us with the severe form of MS. We are the 5-10% that have had nothing available to help, if even in a small way, our progressive form.

When i first heard of it tears streamed down my face. Then we got the news it was being fast tracked for January 2017. FDA approved and ready. We know sometimes shit happens, and it did. We were then informed March 29, 2017. Ok, thats doable. I made my neurologist appointment with tears and such hope to get the ball rolling…

What ball, there’s no rolling. My one hope, to literally save my life, is in the hands of insurance who will not cover it. This drug slows and/or stops the constant progression the few of us with MS are burdened with. My hope was it would stop my arms from being taken from me, my hands, my sight, my voice, my sensation to touch, my ability to breathe on my own. To give me a chance…

I see people talking side effects etc, they will keep the MS if they can have the Benz!!! ARE THEY FUCKING KIDDING ME??? I will deal with the side effects, hell I’ll deal with anything if my Primary Progressive MS slows and/or stops progressing.

I’m out of options here. Once my arms go, I’m done. Yes, I said it… I’m done.

So a big FUCK YOU to the 1% who run the pharmaceutical companies. You are disgusting individuals and I pray karma comes knocking at your door… and she will!!

So, thank you, for taking away my only hope to save my life. May you all rot in Hell!

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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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I started this blog with the hopes of chronicling my MS and my thoughts, etc.. Im realizing that with Primary Progressive MS, there is not much to chronicle. There are no more medications for me to try; hell there are no medications for PPMS. Wait, I’m lying. There is ONE possibly coming to a drug store near you, winter of 2017. But, not for me. Yes, it will be the first medication for PPMS, but I don’t qualify. My EDSS score is too high. I’m between 8 and 8.5. In other words, I’m too far gone! Well okay then.

I sit/lie here 90% of the time. I’m not even sure where I’m going with this entry. I’m not even sure why I’m even blogging it. Maybe out of boredom. I guess this is my personal diary that I just happen to share. A place for me to come back to and ‘remember’, the good and the bad. A place for me to vent. A place where I can say whatever the fuck I want.

I just wish I knew how to get my thoughts out of my head and onto here. A jumbled crazy ass rollercoaster is the only way to explain my thoughts.

“Outlook is grim”, has been the description of two doctors regarding my life now. Well no shit… But, did you have to say it out loud!! RUDE much. 😛 And, I know I know, anyone can die at anytime. They could walk out of their house and get hit by car. I get that. That would be easy. We start dying the minute we’re born if you want to get technical. Picture yourself  lying in bed 24/7 while your body slowly but surely dies daily from illness. It’s not for the weak. With PPMS, there is NO cure, NO remission, NO parole. So, the next time you want to use the ole. “well anyone can die just from blah blah blah”…don’t!! Above all… DO NOT compare one illness to another, especially if you, yourself, do not have said disease. You will never ‘get it’ unless you ‘get it’!

Scary part is that sometimes I really believe I’m going a bit mad. Seems par for the course…

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