This GIF popped up on Facebook and when I saw it I felt empty.￼ I decided to post it because it really does sum up my life. I have been trapped inside my decaying body for approximately 6 years 2 months.￼ It is actually a bit more but I removed doctors visits, visits to the store before my surgery in June 2014, and the occasional visits to my dads. In that time it equals to approximately 28-30 days that I’ve been out of my bed. I don’t know how it happened. What I mean by that is, I don’t know how it got so bad. October 10, 2013 I fell. I was transferring to go to the bathroom, and as I stood up my legs went limp like cooked ￼noodles.￼￼ They did no x-rays at the hospital that I can remember, ￼they just really chalked it up to MS. The hospital and my doctors knew that I was unable to stand sit up, pretty much paralyzed from the waist down, ￼etc. They did the Solu-Medrol bullshit which did nothing for me. Then they basically sent me home with no real after care.
This is where I don’t know how it all happened. The fall definitely started it, and then I go blank. The depression I remember was paralyzing just like my body. Then in a weird whirlwind of doctors appointments the next thing I knew I was scheduled for colostomy and urostomy ￼￼￼surgeries for June 10, 2014. Was this medically necessary or was it done to make it easier for everyone around me? I don’t really know anymore￼.
Why wasn’t I offered acute rehab? Why wasn’t I offered in-home nursing care? I don’t know! 🤷🏻♀️ ￼I do know that a friend, an RN, had to come to my house to catheterize me so I didn’t piss my bed every five minutes. Not sure why my doctors or the hospital didn’t do that for me. ￼I also know, looking back, that I was completely fucking lost. I have never been someone to lie down and be stomped on, but I guess I could not find my strength back then. The surgery, for me, what horrific. ￼￼￼￼ and the next couple of years were literally lived as if I were in a dream.I will fast forward to now, because I don’t have the energy to really talk about it much more. All I know is I am trapped in a body that is destroying itself from the inside out. Since I was denied rehab August 18, 2019 my body is deteriorating more and more. i’ve exhausted, in their mind, all appeals. DENIED!! 🤬 ￼ Because of this, my ￼legs are becoming more contracted. Independence Blue Cross basically feels it’s not medically necessary for me, acute rehab! Because their doctors I guess are my doctors now and they know better. Are they fucking kidding me! I’m the fucking poster child for acute rehab! Here is a link of what is happening to me and what I sent to the insurance company thinking they would actually understand it and help me. ￼￼Bahahaha They either cannot read or they just don’t care. I’m going with the latter. ￼People are telling me I should contact news agencies, attorneys, etc., but the places I’ve contacted obviously don’t think that any of this is wrong. Either that or they’re just scared to death to take on Independence Blue Cross. I guess in the world we’re in right now it’s OK for companies like this to throw away the disabled, people with chronic illness, because we are the people no one really gives a shit about.￼￼￼￼￼￼￼ And quite frankly, I’m tired!!! I have no help whatsoever! Mentally, physically… Nothing. ￼
I am 100% in prison for crimes that I have never committed. The prison that is my body and the four walls of my bedroom. There is only one or two people that completely understand what I’m going through that I know. And when other people say, they know what I’m going through, they completely understand, yet that person/persons are shown standing up in pictures and going places with family… no, you have no fucking clue what I’m going through. And you should be really fucking glad you don’t.￼￼￼ If I were able to even stand up I would never be in this fucking bed. So please don’t talk of things of which you know nothing about.￼ You may share my illness but you don’t share what’s happening to me.￼
What I hate the most about all of this is the person I’m slowly becoming. I really do believe I’m going to little mad, I can no longer see the light at the end of that tunnel, and I’m not sure why I even bother anymore. Yes it’s a new year blah blah blah… but for me there will be no changes.￼￼ AND I am NOT being pessimistic, I’m being realistic! ￼ I will add that you don’t need to worry people, I’m not gonna kill myself, off myself, end it, whatever. Do I think about doing that every fucking day… Yes I fucking do! But, I won’t and believe me it’s not for the reasons that you are probably thinking. And now, I think I’m done for the day and I think I’m going to medicate so that I don’t care what’s happening to me. And for those of you that act like I’m a stoner or something, fucking A right I am!￼￼￼ Cannabis isn’t going to kill my kidneys or my liver like Norco and Xanax and all the other drugs they want to put me on. So yeah I love my weed. And to anyone that says that’s bad for you or it’s addicting or it’s a gateway drug, educate your stupid ass! Or better yet go pour yourself another drink or take one of your sleeping pills and then talk to me. OK I’m getting off base and I’m starting to get pissed so I’m going to end this for today.
So are you loving my new unapologetically me yet?
As always, have courage and be kind!￼￼￼￼