Archive for the ‘Pain’ 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!

I thought all was well with my Home Depot Saga…NOT! Back in the day customer service was a priority, the shit would be done. And certain people would NOT get away with such disrespect of a customer. I’d have been fired in a hot second if I ever treated someone the way those douchebags treated/are treating me. Update: never got my 10am call back. FUCK!!

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

Oh what a World…

fuckuend

 

done

 

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…

 

Surgery, June 10, 2014

****WARNING graphic photos below****

I did not come out of the dark until June 26. Sixteen days of what they call ICU Psychosis. Sixteen days lost to me. To everyone around me I was awake. For me, I was in a dream, not knowing where I was.

Backtrack… The surgery was to help me get some semblance of life back. To be able to go out more and to help those taking care of me. It did not go as planned. All seemed well when they finished and stapled my tummy back together. Sadly they soon knew there was a problem. I’m no doctor so this is in layman’s terms. The stoma was not producing and I was filling up with bacteria. After a week of excruciating pain and testing, of which I have no memory, they realized I needed emergency surgery as my white blood count shot up over night and they new right away I had a serious infection.

Once the un-stapled me they realized they had to stop the colostomy and re-route everything by ileostomy. Sadly the area was highly inflamed and the wound needed to be opened more. So, now, I have a large open stomach wound which will take some months to close.

***GRAPHIC PHOTO***

open wound

At this time I have to have a wound vac done twice a week. Sorry, but it’s fucking painful every time.

After wound vac is placed:

vac

Basically once it’s covered, it vacuums out any type of infection, and helps the wound the slowly close back up. Mostly I’m bummed because I might lose my cute belly button. Kind of sucks. ;-P

At this time it has closed up over 6cm in a short time. My surgeon says I’m the strongest person she has ever met. That even when it got really bad and they the I might go septic, my body fought hard and won.

Honestly, I don’t feel strong right now. The nausea is awful, it’s hard to sleep, and I’m in constant pain… but I will NOT give up now. I’m looking forward to the day they can hook me all back up.

My biggest issue is the anxiety from all of this. It’s a fight not to just break down in tears. But crying makes it hard to breathe and I have to be careful. Sneezing is a bitch as is coughing. But, again, this too shall pass.

I’m thankful to be home. Sadly the second day I got home my house flooded…

Go figure! 😛

Peace