Archive for the ‘dehumanization’ Category

  I’m not even sure how to explain it. And I truly am sad most days, but today as I opened my eyes I felt nothing. Completely void. I was alone for about an hour and realized I didn’t have any water. I forgot to ask for some before my son left for work. And over that small little thing, I just sat there, emotionless with tears running down my face.

 Only emotion I feel lately is anger. Anger because we cannot afford for me to have in-home care. My insurance company, one of the big ones, doesn’t cover that. And God forbid my husband‘s company pays him what he’s worth.  He’s given near 20 years for that company. He’s trained more people there than anyone and never got paid for that. And all the while he did his own work as well.  And the people he trained. now make much more money than he does. I guess because where he works most people are familied in. Yet my husband has more letters of recommendation and more people that will only work with him than anyone else. He gets calls at home from people for help. But this multi million dollar company can’t pay him enough for all his dedication and hard work.

And yes my husband has taken time off, for me to help me. He uses his vacation time and sick pay he’s never taken off the company without using his own hours. Everyone else is constantly on vacation. But that’s what the higher ups do in my husband’s company they go on vacation and leave the work to the real people who know what their doing. And then someone had the nerve to mention my husband taking time off. Again he uses his sick and his vacation pay so it doesn’t come out of the fucking company.  And I pay attention, his colleagues take vacations all the time. But they actually get to take vacations my husband’s “vacations” are usually spent with me in the hospital.

 My husband is a good man and the best at the job he does. Like I said it’s not just coming from me it’s coming from stacks of letters I have at home that people have sent him. And I did work with him years ago and many times people called they would only work with him.

 If anyone reads this that works with him, cut him some slack. I wrote this only me. Because for 20 years I’ve watched my husband works his ass off but because he’s not an “ass kisser”  and honestly that’s what most of those people want. And I’m glad he’s not, that’s one of the things I love about him.

 Emptiness, really sucks. You see I can’t get excited about things because I have no way to get up to do the things that might excite me. My family does what they can when they’re not at work. I can honestly say I really need a caregiver.  Maybe if I divorced my husband and go on government care that will help me.  And the sickest part of that, is people actually have to do that. We are not the richest country in the world. Our system is completely  fucked!

 Now I’m off to watch some more brain cell killing TV.  And that is my life.

Peace ✌

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

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!

ocvrevusjoke

Just when things seem to be getting better, BAM, it hits the fan. This why I can not ever be the shiny happy positive person others want me to be. And I try, but fuck a lot of that!

Unleash the flying monkeys!!

I’ve left 2 messages for my primary care doctors office manager. My doctor turned a specific issue I’m having over to her. We spoke when I was at my doctor a few weeks ago and she was supposed to get back to me. Nothing, nada, nil. I’ve called twice and left detailed messages for her to please call me back. And, I used my nice phone voice. Nothing, nada, nil. The issue is quite a big deal for me. What has happened in the last 30 years when it comes to doing what you say in the workplace. FUCK!!

Unleash the flying monkeys!!

Now, to get my pain meds, you always need a scrip every month, no refills… all thanks to the wonderful druggies out there that abused the medication, and the doctors dumb enough to believe them. Normally I go pick up the scrip at the office with a quick check in every month. So, I called yesterday to see when I can pick it up, and they said they’d talk to my doc and call me back. Bahahaha, you guessed it, no call back. I’ve been going to my neuro for 19 years. WTF. So I called back and they said my doc will be calling me back. I have a real illness that causes real pain. To bad I can’t fake it, maybe then I’d get the medication I need. FUCK!!

Unleash the flying monkeys!!

Why, just why… Come on Universe, cut me a fucking break. I have an aggressive form of primary progressive MS. NO treatments available to me. I’m bedridden with double stomas, degenerative disc, muscle spasms, tremors, constant numbness,  and unable to do basic things like roll over in my bed or even sit up. I deal with severe anxiety and depression, complete and utter loneliness. What fucking more do you want from me? Sometimes death sounds very inviting.

Unleash the flying monkeys!!

But, fuck you, I’m not a quitter. And now I’m just pissed off. Do not mistake my disability for weakness. My mind still works and is smarter than you. Look out, here I come!!

Too late!! mwahahaha

Too late!! mwahahaha

Here’s my MS in a nutshell; cannot walk, cannot sit up on my own, cannot get out of bed without using a Hoyer lift, daily pain, double stoma girl (colostomy, urostomy), numbness, fatigue, migraines, shakes, occasional bedsores, unable to shower alone, degenerative disc, obviously bed-ridden and wheel-chariot bound, drop foot, stiffness, pain, did I say PAIN, living in a prison that IS my body, no independence, unable to drive anymore, insomnia (severe), primary progressive MS (aggressive), hot and cold issues, memory issues, brain fog, kaleidescope eyes, dizziness, depression, anxiety, and the list goes on!

I fight every day, and the fight is exhausting.

I won’t stop fighting.

Hope is paralyizing. I won’t stop hoping.

I want to give up daily. I won’t give up.

95b79e44821977e43c74ea2e8bd726dd

I will be strong!

On March 12th, I turned 50. I told myself that on this day I would be able to stand up again or at least be able transfer to my wheelchair. Well, didn’t happen.

I’m sitting here, on my bed, listening to my baby Gatsby cry.  When everyone left the house, they left him in the from of the house. I can’t do anything to get him in here.  It’s killing me that I am not able to get out of my bed. I’m so pissed off right now!!!! Frustration Central here!!!

This was’t supposed to be my life! And for those who might say that life’s not fair… Fuck You! I know this first hand. The funny thing is that the people who usually say that, have no health issues or anything else for that matter! I think I’m allowed to be be pissed!! Since my fall five months ago, I’ve been bed-ridden, unable to get get up w/o using the 900.00 lift I had to buy, and utterly alone.

I do put on a ‘happy’ face most days, or at least I try to. This is why I have not blogged for some time. Even when I’m angry and depressed I usually add a dash of humor or attempt to be funny. I make fun of my illness to get through… but ya know, it’s NOT funny, there is no humor in this. I’ve been fighting since 1986 according to the MS specialists at UCLA. I’m fucking tired. I’m trapped in a  body I hate, ummm, scratch that… I’m trapped in a prison that is my body. Try spending 24/7 in bed, relying on, begging people around you for help. No privacy, no independence, feeling like a burden, in constant pain. [knees, back, chest, shoulders, neck, etc.] Thankfully not usually at the same time.

Just shoot me!

Just shoot me!

Next month I go back to an MS specialist to get on a new poison err medication to try and help me get a lil something back. Those who know about this wonder why I’m not excited. Why? Well the last 4 MS meds actually helped and I got excited… but the excitement faded when the side effects were killing my liver so I had to stop. The more excited I get, the bigger the fall. So, excuse me for erring on the side of caution. I’m tired…

I truly wish I had something funny to end with, but it’s just not in me right now. Think I’ll take something to help me feel no pain so I can get through the shit that is my life. Call me the pity party Queen if you will. Frankly I don’t give a shit. Hmmm maybe I’ll go buy some shoes I won’t wear anytime soon…

BTW… being 50 sucks!!!

After a bad fall about a month ago, I’ve been in and out of hospital emergency rooms and spent a little bit under a week in hospital. Lotta good it did, as I’m worse now than I was before I went in. I need in-home care I need help but the doctors keep blowing me off. And my doctor’s nurses, forget about it incompetence galore!

They keep telling me they’ll call me back once they get information about in-home care. Has not happened at all. They don’t even call my prescriptions when they expire anymore. I have to call and remind them. Yeah that helps with my stress level! I’ve been with the same doctor for 17 years!

I can’t even get into what happened in my last hospital visit a couple of weeks ago as it just brings back too many awful memories. Not as bad as back in 2009-2010 but almost.

At this point I’m completely bed ridden, my legs do not work at all I can only move them if somebody moves them for me hard to transfer to my chair I won’t even get into going to the bathroom. LOL that’s way too much information… TMI!!

Bottom line I need home health care, and my doctors are ignoring me and not helping me. So me, being the bitch that I am, I have an appointment with a new neurologist on January 28 and an appointment on the 18th of this month with the new internist. I’m done, and I’m taking charge and taking back my power!

For those who know me, know I’m pissed and when I get pissed I get shit done. They know not who they are dealing with! LOL I’m done believing that this is it for me and I’ll never move again that I’m going to be stuck in a bed the rest of my life.

I Even got my new wheelchair and it’s the bomb, but I can’t even transfer to it. So what’s the fucking point right now!

Fear-Pain-Anger-Depression

I really do wonder sometimes… What’s the fucking point!

[sorry for spelling and or grammar mistakes talk text doesn’t always work exactly as it should]

need sleep...