FUCK · Health · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sarcasm · Strength

Be the bad ass you were meant to be!

I’m telling you today is already on my nerves. I got my bladder surgery scheduled and the pre-surgery doctors appointment. I did what I was told and called to get the pre-certification for the non-emergent transport, and was told my doctor needs to call. Now a week and a half ago the Young lady at Accolade called with me on the phone and took care of this for me. I think something must have happened because today no one will help me do it. Then, this weekend I received a new bill from my August 2019 stay and while getting my papers all together I found one I’d forgotten about. Previously I was told that my responsibility would be $50.90, but these bills together are $3000 and some change. I think someone’s messing with me. Am I on candid camera? Or maybe the TV show Punked came back. I know the wizard is behind the curtain. 😂

Trust me this morning I haven’t been strong. I’ve been crying a lot because it’s so overwhelming right now. This company (Independence Blue Cross) and their people are keeping proper care from me and making everything I need that much harder. it’s been a big eye-opening experience for me. I used to think people were exaggerating when they said their health insurance wasn’t helping them etc. I mean how can your health insurance not help you when you pay for that service?! Right? It has been boldly thrown into my face that it’s all about the money and the greed of these corporations. They have the money to put me in a top-of-the-line acute neurological rehab, but they’re not going to do it because that would take away from their paychecks. I am tired, I am discouraged, I am broken, but I will not be defeated! If they’re doing this to me how many other people have they done this to? And how many of those people did not have the strength or even know what to do to get help. This is what these companies do. They prey on people like me and their rent-a-docs run our healthcare without even seeing us or meeting us. 

So, while I have had a mental breakdown this morning and am feeling myself falling into the depths of healthcare insurance hell, I will not stop! this is my life! And I really hate when my mind goes to that dark place and I pray for karma to hit each and every one of the people that are denying me the life-saving care. I don’t like being that person. I don’t want anyone to feel the depths of despair that I feel every morning I wake up and realize it’s another day trapped in this hell. I wish these people would come to my fucking home. All they would have to do is take one look at my legs and they would see how much I need their help. Oh shit, wait a minute… They DON’T FUCKING CARE! Phew… that was a close one, I almost gave them credit for being human.

I am adjusting my sails right now!! 🖤

Have courage and be kind.

Anger · Fear · Health · HELL · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

My soul is tired but my will is strong…

Yesterday was an eye-opening experience for me being out of bed really for the first time since August 18, 2019. I am in so much pain today and sleep did not come easily last night. I now understand fully and completely that in-home therapy is not gonna help me at all. I need to be in a place where they re-train my body to move again and help me deal with the pain in my hips. It’s going to be a process and it has to be hard-core. I was up all night thinking about the night I fell on October 10, 2013 and how everything led up to where I am now. I need neurological physical therapy in a facility, NOT at home. I’m going to need the proper medications for the pain and I need to learn how to move again. When I say I’m like a newborn baby, I’m not being sarcastic. I know it’s hard to believe. 😊 I am now going to make an appointment with the neurologist so he gets on board with my pain management doctor about hard-core rehab. The ambulance service comes early Friday morning to take me to my pain management doctors appointment. I’m scared to death. I was only in my chair for a couple of hours and the edema was so bad yesterday it really freaked me out. I’ve never had it that bad. I know that I’m going to be in a lying down position, but that’s how my legs were yesterday I think it was more about the upper half of my body. I don’t even know how to explain it. What I have realized is if something doesn’t happen quickly I’m seriously screwed. I don’t think it’ll ever come back. I don’t think I’ll ever be able to move right again unless something happens now. They’re hoping that I am too ill and too tired to fight. We all know it’s about money not about anybody’s health or well-being. I am tired. I am fed up. I am so close to breaking. But unfortunately for them, that’s when my strength shows up! This IS life or death for me. That’s not an overstatement! If something doesn’t change quickly I will not be here much longer. My body is breaking more and more every minute I’m trapped in this bed. Somethings got to give!! I know I know this is really in your face. But I will never back down from this because it is my life! I’ll say that again, this is my life! so now it’s time to get all my ducks in their proverbial row, get to all my doctors appointments via stretcher, and bring it! I’m seriously tired just thinking about it. Please universe give me strength!

Wait till they get a load of me! 😈

Have courage and be kind.

Anger · FUCK · Health · HELL · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness

Weird Wednesday

I was cruising the Internet and this picture popped up. It’s not meant to be sad it’s not meant to scare anyone. But I’m not going to spend another six years and three months in my bed. Without help, proper help, I’m never going to get out of this prison have a bed. My ankles suffer from dropfoot and contractures. My knees haven’t been able to straighten in about three years. And my hips I can’t even get in my Hoyer lift because of the pain. This has been going on for a very long time now and nothing has changed. I really thought my time in rehab in 2018 was going to save me. I fought so hard I did so well, then nothing. How do people that are bedridden see their doctors? I know they can call non-emergent transport, then try to coordinate that with their doctors appointments but first they have to make the calls to make sure it will be approved. Really? Making something hard even harder.

I wish I could be the shiny happy person that people want me to be. But that’s not gonna happen. I’m angry. I’m pissed off. I get it life‘s not fair blah blah blah. You know the people that say that to me… People with no chronic illness. I guarantee they wouldn’t last one day trapped in their bed not able to even get up to go to the bathroom, be able to roll over in their bed, or sit up without help. They would break the first 20 minutes.

Tears! 😂😂😂 No, if you could read my mind you would be screaming at the top of your lungs for help. I am so angry and I know that anger doesn’t help. But when every year it just gets worse, sorry I can’t put on that smile every fucking day for you. I’m angry about people who I see complaining all the time about the tiniest little things. Yes I’m an asshole. I can’t sugarcoat shit every fucking day. I really just want it all to end. I really really want freedom. I’m so tired of being in prison for a crime I never committed.

Have courage and be kind

Health · HELL · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sarcasm · Strength

Thursday Feelings – I am a Warrior

I’m kind of excited I found a non-emergency transport so that I can get to my doctors. If I can work it out perfectly I can make my appointments for the same day. It’s nice that all my doctors are in the same building. It’s going to be so much easier going by stretcher then having to try to sit for any period of time in my wheelchair. I can’t even get my wheelchair so I think this is going to be good. I think I’ll buy a crown for that day and as they’re pushing me through, I’ll put my hand up and do the wave. 😂

I’m going to talk to my doctor about contracture surgery as well as rehab. Maybe that’s the route to go. I’ve been trying to find the perfect in-home PT group from the names the Blue Cross rep gave me, but that’s not helping. All they tell me is, “Our rehab people are good.” I’m sure they are. I’m asking if they deal with muscle contractures. Frankly I don’t think any of them know what that is. 🤔 I just want to know how in-home therapy is going to be able to help me with the pain. They don’t. I need to be in a facility if I want any pain help. So I guess I’m just going to grit my teeth. 😁 I can tell that this is going to be a lot of fun…

Now I need to get my appointments, get the certification from the insurance company, and get a time slot for the transport. Oh how I love jumping through all these hoops just to go to my doctor. Oh well, we do what we Gotta do. 😏
Time to straighten my crown and get shit done. 🖤Have courage and be kind

Fear · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness · Strength

Sunday Feelings

When I first saw this picture sometime ago my eyes filled up with tears. I came across it again this morning. It had a different quote on it for multiple sclerosis but it was very grainy and looked terrible. 🤷🏻‍♀️ I did a Google search and the image popped up with the other quote and a blank picture. I felt the need to add my own quote to this powerful powerful image.This picture sums up my life completely. we need a cure! I just hope one is found in my lifetime before it is too late for me.

Have courage and be kind

*** if anyone knows the creator of this amazing picture, please let me know. I’d like to give credit where credit is due.

Anger · Fear · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · Sadness · Strength

Depression and Fear are Paralyzing

The past few days have been hard. The stress from the denials and all of the subsequent appeals and the denial for the ER and then the reprocessing of that claim… It has been hell. My last MRI showed that my PPMS was not active. That MRI was about or year to a year and a half ago. I don’t even remember because my mind right now is scrambled. Yes, I could look it up, but quite frankly I’m not going to because I’m fucking tired. I get it, I’m in bed 24/7 so how can I be tired, right? My body doesn’t even understand awake and rest anymore. It’s not sure if it’s supposed to be up or down. I’m never comfortable anymore. There’s always pain. I’m not a neurologist and I haven’t had a recent MRI, but I know that my PPMS is active again. I believe it’s been happening over the past couple weeks or so. I have no energy at all. It’s hard to lift my head at times. I am so scared that I’m not sure what to do anymore. So I find these motivational quotes on an app that I thought might help me.I have courage, I haven’t given up on myself, so when am I going to be cut a break. These motivational quotes don’t work for everyone. I know, I know, if I look really hard it can work for me. 🤦🏻‍♀️ Sorry if I’m not miss optimistic right now. Most likely it is BECAUSE of my recent conversation with Independence Blue Cross. 

It seems that I am also going to have to fight, a.k.a. jump through hoops to be able to get to my doctors appointments. I haven’t been able to get out of my bed for so long (OK we did finally get me up for a shower last Saturday. But, it’s NOT gonna happen again because I can’t go through that pain again) I haven’t been to my doctors since before August 18, 2019. (my wonderful ER visit) So the gentleman from Independence Blue Cross found me a couple of non-emergent transports that they will cover in network that can possibly take me to my appointments. All I have to do is call these places to see which one will do it, ie; take me pick me up blah blah blah. Then I need to find out when they’re available, an appointment for my doctor, not in that order, and then… Look on the back of my insurance card call the number to make sure I can get pre-certified for this non-emergent transport. Are you fucking kidding me! I guess this happens to a lot of people if they actually made a meme for it. He also gave me the names of in-home physical therapy companies that I can call and see if they might be able to help me. Once I find a company that I feel comfortable with, I need to get to my doctor to have my doctor send in the paperwork to hopefully get in-home PT. 😳 I don’t think that the people realize at Independence Blue Cross the amount of pain it causes me to have my legs moved in to their proper position. It’s not like I haven’t explained it to everyone, it’s because they don’t give a shit. They don’t seem to understand that with these type of muscle contractures that I have, it needs acute inpatient rehab so you are monitored with the proper pain medications. but as we know it’s all about the money. And because their rent-a-docs feel inpatient is not medically necessary for me, I get to go through excruciating amounts of pain with in home PT. 🤬

But, I am going to play their stupid silly little games. I am going to jump through their stupid silly little hoops. What they don’t understand, or maybe they do, is I’m not going to be quiet about any of it. This happens to too many people too often. For fucks sake’s they’re running my husband’s medical care as well. But, I digress, that’s a whole other blog that I will get into very soon. 😏

So this is where I’m at right now. I haven’t been sleeping because I cry so often I can’t breathe as my whole head gets stuffed up. And quite frankly, if my PPMS is active again, it’s on Independence Blue Cross for not letting me get the health care that my doctors are trying to get for me that I need!!! Yes I completely know that I have a bunch of run on sentences, so sue me. I have never once claimed to be a writer. That’s my baby sister.

I’m sorry if it’s getting monotonous regarding my health care insurance, but I am that squeaky wheel and I cannot be quiet anymore. As always, have courage and be kind.

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.