Health · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

Be the squeaky wheel!

This is true on all kinds of levels. But, when it comes to your healthcare, it should NOT be this way!

An update to my healthcare insurance fiasco: it’s all been approved for my ER visit. Now I know this should make me really happy, and it does. The only problem I have with all of this, is that it took so much of my spirit and caused so much stress for something that was, an ‘error’. my question, is what if I hadn’t appealed or been so loud about it? That ‘error’ would’ve cost me over $20,000. Unfortunately I know there are people out there that don’t know their rights. There are people out there that don’t know how to appeal. There are people out there that don’t have an army of amazing friends that will retweet and help. We need healthcare reform on different levels. We need better advocacy for people to be able to fight. We need better healthcare insurance so that companies don’t have these, ‘errors’!

So yes, I’m very happy this all got taken care of, but it should not have happened in the first place. I am very thankful for the representative I spoke with that helped me, but it should not have happened in the first place.My advice to people who get these outrageous medical bills where your insurance company is denying you. Don’t stop fighting! Scream About it to everyone as loud as you can! Look for the right type of attorneys if you need to. And in all my fun dealings with this I gained a little knowledge. An Erisa Attorney is where you want to start your search. Take it to the Internet, take it to the newspapers, the news stations, anywhere you feel you could be heard!  

We need to be heard when we are denied healthcare. We need to stop letting the health insurance companies run our medical care and act like they are our doctors. They are NOT!! I am not going to give up or stop being heard. We are all human beings and we all deserve healthcare regardless of our income, our gender, our race. 

Be loud, be heard. Have courage and be kind.

Anger · Craziness · Darkness · Health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Sarcasm · Strength · Stupid Stuff

Trapped Inside

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!

Fear · Primary Progressive MS · Ramblings · RANDOM · sadness

Thoughts lost…

This quote is so true, and in its own way, scary. 

I said I was going to be unapologetically me etc. and tell my truths. A big truth and a very scary truth, is that in this moment I have no idea what or where I was going with this blog entry. The thought completely left my being. I just can’t find the words. 😪 Logically I know that it has something to do with this picture, But no matter how hard I try I cannot remember. So, I think I’m going to go and cry for a little bit…

Have courage and be kind!

Dreams · Fear · Ramblings · Sleep

I’ll be dreaming…

So, sometimes I wake up in the middle of the night,  and have some seriously weird things going on inside my head. So, lately I have been jotting them down. [there is no real order as these are quick thoughts]

#1 “The room was suffocating, people everywhere, must get out, where is the door, the red door. She darts to the door, she flees through the red door. She turns to a blank wall, the door is gone, she is pulled into the darkness.”

© 12/24/2009

Red Door

#2 “She runs through the woods, something is following her. Is something following her? She cannot stop running, running to nowhere. Is she running? She falls and everything turns to fog. Her eyes open, she sees familiar faces, she’s home.”

© 12/27/2009

#3 Smiling faces, tearful eyes, angry frowns, a wheelchair sits in the distance, she reaches for it, she cannot grasp it, she tries to stand and the floor comes up to meet her. Laughing, whispering, soft childlike giggles, all eyes on her. She cannot move, she bows her head in tears.”

© 01/05/2010

——————————–

Yes, I see the resemblance to me in each of these bits! Maybe I’ll write a horror story or something. 😛

Blessings and Hope…

Craziness · Ramblings

Blank

We see at all the networking sites ‘What’s your status’ etc. Have you ever felt like putting ‘blank’?

I have had all kinds of things going on in my mind and all ready to blog them, then BAM nothing. I log in here get ready to blog and wooosh the thought go flying out like a birdie from it’s nest. Just flutters away.

Last night I could not sleep. So many things rattling around in my head. I felt like a bingo ball roller. I had all kinds of ideas to blog about today. Then sleep came and thoughts all gone. Usually, I will get up and write down the ideas on paper and then decipher them in the morning. But, last night it was so late and I was afraid I would wake someone up. I can remember bits and pieces of my thoughts, but they come out like a horror movie all over the place. My dreams can be very creepy due to some of the medications I have to take. I try to remember them so I can write them down, but somehow they are gone.

So, I wonder, if above all of our heads when we sleep is a ‘thought’ taker. A lil cloud that consumes your thoughts and dreams and teases you like a an older sibling. Putting it close to you, then snatching it away with an evil grin taunting you. You keep reaching for it an it gets pulled further and further from you. You strain to grasp it, but it always just out of reach.

So, one day, I purchased a voice recorder to ‘save’ my thoughts when I get them, but then realized, “Like that’s not gonna wake up the house?” For the daytime it’s great, but most of my thoughts and ideas come to me at night when the house is still and dark. The only lights are from my Mac screen and lit keyboard. It is then I can close my eyes and really hear myself. The occasional car passes outside with a hum of the tires on the road. Every now and then one of my furbabies makes a lil groan. Letting momma know they are there. Peaceful at last…

Maybe, in not having a thought and feeling blank, I found a thought and am no longer blank. Satisfaction!

Blessings and hope!

Ramblings

How do U blog? What’s your personality?

1. Do you get and idea then think it out and write your blog?

2. Do you write the blog, save the draft, and then edit before publishing it?

3. Or do you just fly by the seat of your pants and just blog?

I’m a 3. I get so many thoughts going at any given time I just start typing and whatever ends up on the page, is my blog. My iBot blog started out as something completely different, and just took on a whole new meaning. I am your typical type ‘A’ personality. I have a bit of ‘B’ as well, but lean more towards ‘A’. For better or for worse that is me.

From Wikipedia:

Type A individuals can be described as impatient, time-conscious, concerned about their status, highly competitive, ambitious, business-like, aggressive, having difficulty relaxing; and are sometimes disliked by individuals with Type B personalties for the way that they’re always rushing. They are often high-achieving workaholics who multi-task, drive themselves with deadlines, and are unhappy about delays. Because of these characteristics, Type A individuals are often described as “stress junkies.”Type A individuals can be described as impatient, time-conscious, concerned about their status, highly competitive, ambitious, business-like, aggressive, having difficulty relaxing. Because of these characteristics, Type A individuals are often described as “stress junkies.”

So according to that, basically I dislike myself for always rushing! lol

Now, i have slowed a bit on some of the traits, due to my illness. But, I still find that I thrive on pressure, stress if you will. I actually call friends at times to ‘talk me down’ from going after someone who is, well for lack of a better phrase, pissing me off. Sometimes people ASSume I am not an educated woman. I learned when I started using the WC more people talked to and treated me differently. My legs may not not work and I may have other health issues, but I am still a College educated, intelligent woman. But, I refuse to have a battle of wit with and unarmed person!! 😛

I think is this is where the mind goes racing and thoughts and ideas come rushing out. It has a lot to do with my sleeping issues as my mind will not shaddup. As you can see, I tend to ump back and forth and all over as I do not want to miss a thing. When I want something done I want it done now. Not late, not in an hour, but now. I am still working hard on becoming less of the ‘A’ as it can cause me a lot of fatigue. But for the years before my illness this was me. I could multi-task better than anyone. I thrived on difficult problems as I knew I could do it better and quicker. Now, the times they have a changed!

This, for me is a learning process. I know my faults and need to work on them. I need to relax and realize whatever needs to be done, will get done. It may take a bit longer, but it will happen. For me I get stressed as I know I have so much to offer, yet no way to do it. But, for those who do know me, they know in the end I will figure it out and get it going.

For some this is probably a mindless blog, hence the category mindless thoughts. But this has been floating all over my brain for a bit and here it. It’s a thought process for me and helps me to see the areas I may need to work on and by going back over my blogs I can see where my mind is at the time.

I guess the bottom line is, it’s my blog and I can write if I want to!! rofl

Blessings and Peace!