Archive for the ‘lonliness’ 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

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

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

MS is an evil bitch! For the first time in a very long time I’ve been feeling “happy”. I haven’t felt this way in quite some time. I learned many years ago to downplay my emotions. It always seemed to go bad when I’d mention the “H” word. lol Like the other shoe would drop if I even thought of it. And, BAM, it seems to be par for my course. The MonSter, that is MS, always jumps in to harsh my mellow. And the bitch is jumping on a trampoline right now. I’ve been doing pretty good. Home Depot is going to get my window issues fixed [knock on wood] and life in general is good. So, I should have expected something to happen. I always expect the worst and then when the best happens I get giddy. 😉 I know that seems like a bad way to look at things, but for me, it keeps me sane. Well, I tried looking for and expecting the best this time, and damn if MS didn’t pop up and mess my shit up again. I was actually feeling less fatigued and wanting to do things. But, no, she had to pop in and remind me of my ‘disability’. I’m feeling drained and out of sorts. Depressed and tearful.

I hear the saying, I have MS, but MS doesn’t have me, all the time. But, um, nope… MS does in fact have me. For me it’s all about how I handle it. I can fall apart and give in to it, or keep fighting. I chose to fight. I have PPMS [primary progressive]. My MS is no longer ‘invisible’. It’s out there and in your face visible. I am in the 10% group with my PPMS, and many have no idea there are different types of MS. This page, here, quickly explains the types.

Beotch!!

Beotch!!

I’ll get through this and keep pushing forward, but sometimes it gets so frustrating. I’m going to throw my pity-party for now, and everyone is invited! 😛

my mantra

my mantra

Now I am going to try and find that ‘happy place’ again. I may have lost the battle to MS, but I will win the war!!

Peace!!

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…

 

So, my friend Steph wants me to do an ‘Ask Tracy’ sort of thing. For some reason she finds me funny and refreshingly errrr, brutally honest.

Right now I’m pretty much bed-ridden, a prisoner in my own body. The boredom is making me a bit nutty… Even more so than normal. lol So I thought this could be fun.

So, if anyone has any kind of question, ask me in the comment section of this post. Remember, I am brutally honest, so if you do not want to hear/read what I think, then do not comment. 😛

cool0

I’m finding out that depression for me causes over-spending. Now this would be okay if I had an endless supply of funds. Some turn to food, I turn to online shopping… okay food sometimes! 😉

I’m sure many know the feeling. Being homebound with the internet shopping world at my fingertips makes it so hard to ‘just say no!’ Now, I rarely pay for shipping and always get discounts, but it all adds up. I love jewelry and that’s the one thing I can wear all the time, in bed or not. Candles and perfumes are my downfall as well. Clothes for the kids and fun stuff for hubby… the list goes on and on and on.

Depression is a bitch and it comes with many ‘costs’.

I know where my depression comes from, but it’s something i cannot find help for. I get depressed for the obvious reason, my MS, but there is an even bigger depressant I won’t go in to. I’m searching for help with it as I feel my doctors have dropped the ball.

I’m one of the poster children for the saying, “Life sucks and then you die”!

Peace out