Archive for the ‘boredom’ Category

 Primary progressive multiple sclerosis, end stage. There is no medication for it, there is no remission, there is no cure. So when do you say enough?

 I lie in my bed 24 hours a day seven days a week. When I do get into my wheelchair the pain is so bad I can’t sit for more than 30 minutes to an hour. So I don’t get it my wheelchair. Even lying in my bed I have pain constantly.

 I no longer have the caregiver as I cannot afford one. Hospice won’t even take me. They don’t consider what I have terminal. I guess it’s OK that I live another 20 years lying in a bed in constant pain. If that’s not terminal  I don’t know what is.  Fuck you hospice!

 Dr. Kevorkian  knew what my type of illness did to a person. He helped them die with dignity before they became so bad that they could do nothing for themselves.  I’m already there I can literally do nothing for myself. Except talk text and look at my phone and use a remote control to watch endless hours of television until my brain goes numb.

 I have a hard time holding utensils now. But I guess it’s OK if I just become a head in a bed that is in constant pain. People say tomorrow’s another day.  Not for me, tomorrow is the same thing, every day for the rest of my life.

 The new so-called medication for progressive MS is a big farce. Maybe it will help secondary progressive but that’s not even in the same league as primary progressive. Ocrevus, The manufacturer, when I called them basically told me I’m too far gone. On the disability scale I’m an 8.2. So I can’t take the medication. But they don’t really give you a reason why.

 I’m not looking for pity I’m not looking for any ones I’m sorry’s, I’m bringing about awareness to a disease that is looked at as a basic, oh well you have MS, disease.  It’s not basic it’s like living in hell.

I’m off, as I can barely talk without crying anymore. I just want to  have some control over my own life and not die a rotting shell of the person I once was.

So perfect, so me!!

Bahahahaha!

Peace out! ❤

Just another little poll. I’m kind of a horror fan myself, but really watch anything and everything.

 Did I forget drama? 😮 I guess I did. LOL if dramas are your thing, just write it in the comments. Have a fabulous morning, day, night wherever you may be.

Peace out! 🖤

cool0

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!!

hellnaw

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!

notdead

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…

madhere