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!

Anger · Health · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength · Stupid Stuff

Fighting through…

I’ve been trying to figure out a way how to approach leaving the rehab facility and continuing on at home. Sad to say, the ball was dropped once I left. I truly feel like I was just a body to fill a bed. Since being home, (March 23) I’ve had exactly four in-home physical therapy sessions. I’ve seen the pain management/rehab doctor twice and was told I would have more rehab appointments. No one has called to set those up, and when I call, I never get a return call.  So I am taking the bull by the horns, so to speak, by bustin’ my own ass at home. I wear my Velcro arm weights and do arm exercises daily. I’m doing my best to strengthen my core. And when my husband feels like it, he helps move my legs around for me.

Right now I’m dealing with another wonderful bacterial infection in my bladder and kidneys. Because of the bowel section they used to build my urostomy there’s always a little bacteria that ends up in my bladder. I’m not gonna lie, I think it’s stupid AF that they use part of the bowel knowing it has bacteria and can cause problems. I’m not sure why they didn’t choose another way to build the urostomy. hmmmm I was told by having the urostomy done it would stop my infections etc. Well slap me silly and call me stupid, but it’s made it worse. I have to take a daily antibiotic, Nitrofurantoin, twice daily every day for the rest of my life. Last year I had bladder stones and kidney stones which were all surgically removed. When my urologist went through my stoma with a camera it was like looking at rocky beach inside my bladder. She said she’d never seen so many bladder stones. The removal of those wasn’t that hard. A tube was inserted through the stoma and they were vacuumed out. The kidney stones were a whole nother story. I went in for an outpatient procedure to place the tube into my left kidney which would stay there for five days and then they would vacuum those out. I ended up staying in the hospital for five days. Then when they went in to take out the kidney stones, they could not remove all of them so the tube had to stay in my back for another five days. Unfortunately it caused me a lot of problems and constantly leaked, so for the five days I had to be put into a nursing Center. When I finally had the procedure to remove the kidney stones, all was well. But alas, I have more bladder stones and kidney stones yet again. So what, do I have to have surgery every year to remove these? I feel like I get two steps forward and I’m thrown four or 10 steps back.

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I know my newest bacterial infection is due, yet again, to the wonderful piece of bowel in my urostomy. Then of course, since things don’t always go as planned, Walgreens where I get my prescriptions fucked up. LOL my prescription for Augmentin was called in on Friday. On Monday I called Walgreens as it seemed to be taking quite some time. They said they were out of stock and would be getting it in the next day on the shipment. So I called the next day and was told they weren’t getting any at all. That my doctor wanted the name brand and they do not carry the name brand. They said they would call my doctor and see if I can use the generic! Okay… why the fuck didn’t they do that in the first place and call me. Meanwhile I’m feeling awful! I went to the doctor because I knew my fatigue and sheer feeling like I was dying was not due to my MS. Not everything is MS!! So I kind of needed this medication right away. I was curious as to why no one called to let me know this. And of course dead air on the other end of the phone. To make a long story short, I finally had enough and yesterday, Wednesday, I called Rite Aid and they called Walgreens and within an hour I had my medication. We have used Walgreens for forever, but since the main pharmacist left a little over a year ago the service has been crap. So now, buh-bye Walgreens!

I will say that my new outlook, trying to keep the positivity floating, helped me through the situation. I didn’t lose my shit, too much. I just chalked it up as another little bump in the road that I would get through. I really believe it helped me to not feel worse by causing me added amount of stress. I will always find a way to make it through the rain. We must remain strong in times of trouble. We must have courage to keep fighting! Those are the markings of the true warrior!

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Always remember to have courage and be kind!

Happiness · Health · Hope · Medical · PAIN · Quotes · Ramblings · RANDOM · Sarcasm · Silly · Strength

Positivity…

This whole positive, optimistic thing is really new to me. I grew up in a somewhat negative family. Don’t get me wrong, there was a lot of love, but also negativity. These type of behaviors are learned. When you’re around negative forces it rubs off on your psyche. Now there were happy, positive times for sure, but looking back a lot of negative as well. And it was ‘taught’ in previous generations. It didn’t just start in my family, and it took me 53 years to realize this. The realization came while I was in rehab. The positivity train that that took over during that time made me re-evaluate a lot of of my life.

Again, there were a lot of positive things in my life. Unfortunately, negativity always took over many of the positive aspects. The issue I am running in to now is others in my life aren’t in the same place I am. I’ve also realized that the so called positive people in my life, truly were not all the positive. They preached positivity, but honestly didn’t live it. I have had to rid myself of many toxic things and/or people as of late. And while it is sometimes sad, I am actually okay with it. I finally understand the concept of, you have to take care of yourself first, or you cannot help anyone else.

I have found myself more than once falling back into that angry negative place. When that happens, I pause, take a breath and move on. I just give myself a little space from the negative forces that be. It’s been a very hard journey to get where I am at today. I will not let anyone take away my new outlook. Sadly, I feel like there are a few out there trying to do just that. Like I said, they’re still in that not so good place. I truly hope they can find their way out of it, but either way I will not go back.

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We truly are in charge of our own happiness no matter the hardships in our life. Believe me, it would be very easy for me to just lie down and die. And, I almost did just that. I will not go back there and I will not let anyone steal my happiness. I will not let anyone takeaway my new positive, optimistic, and determined heart. I have worked too hard in the last two months to get to this place. I also will not apologize for it.

Just a small glimpse in to the life that is me. I will get back to the journey that got me here… eventually. I hope those of you following/reading my blog are living your life to it’s fullest potential. We ALL deserve to be happy, no matter the circumstance.

Have Courage and Be Kind

 

Darkness · Fear · Hope · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · RANDOM · Religion

Why do we blog?

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

Anger · Craziness · Darkness · Health · Ramblings

Blog blog blog

I’ve just recently started blogging again. It’s helping me with trying to end the monotony that is my life. While I hope people read and maybe take something away from my blogs, I really do this for me. It helps get those nagging thoughts out of my head. I know my blogs may sometimes be depressing, but that comes with life and MS.

New news, Home Depot is sending Jerry [new guy] to fix the lil’ latch/clip that broke the first day. Did Briana call me, of course not. Passing the buck again!

I did get some good advice. A ‘friend’ told me to get the license numbers of the contractors they hired. I am also going to get an estimate of the stucco damage they caused all around the windows and doors. Their workers also lost a few of my window house alarm magnets. Will be getting an estimate for those as well.

Since the time of Mark Nord, they’ve been talking compensation for all they’ve put us through. Briana said she’d be talking to Mark about it. Right, the guy that blew me off for months then sent Briana my way. She and I have lots to discuss after tomorrow. Fraud, lies, rudeness, just don’t!!

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Peace out my peeps!!

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!