FUCK · Medical · mental health · PAIN · Primary Progressive MS

Days that turn into years…

I was bored so I did a Google search on how many days it’s been since I’ve been in bed since my fall on October 10, 2013. Technically it’s more like 2,462 days taking into account doctors visits and things like that.

I also realized it’s been almost a year since I have been dealing with constant hip pain and have not been able to actually have a shower. Okay, don’t gross out I do bed baths. This timeline was when I had thought I had broken my hip and had gone to the hospital and Independence Blue Cross denied me rehab.

I probably shouldn’t look at it like this, but there you have it. I’m kind of numb. Physical Therapy hasn’t started back up yet. Quite frankly does it even matter since insurance will only give me two actual physical therapy appointments? Okay in reality they gave me four physical therapy appointments, two of which was checking me in and signing me out. Now, unfortunately for me, the young man that was helping me privately has not been able to be here because of a Covid scare so we are waiting to make sure he is OK. I know I have to keep positive and try to find the good in every day. Unfortunately for me, that other fucking shoe always has to drop when things are going well. I really hate that fucking shoe.

Being trapped in a bed is no walk in the park. Literally. And let me explain being bedbound to you. Being truly bedbound means you cannot get out of your bed for anything. I understand that people try to understand what I’m going through, but please don’t tell me you are also bedbound when you are not. It really downplays the pain of what I’m living through. Especially when I see pictures of you out of your bed doing things. Don’t get me wrong, I am so very happy that you’re able to do that, but please don’t use the term bedridden or bedbound, because you are not. Now, once I get my pain under control, I will go longer be bedbound. I just keep hope every day that I will be able to one day get my pain under control. The only problems I foresee are what has been my problem from the time I fell, my doctors…

Have courage and be kind.

Craziness · FUCK · Health · HELL · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Sarcasm · Strength

How do you know how to feel when you don’t know how you’re feeling?

Lately when my alarm goes off in the morning I’ve just been lying in my bed for a good hour or more debating… do I actually open my eyes and wake up or do I go back to sleep?! My days run into each other and as of late I’ve been a day off. I’m still waiting for the Physical Therapy to get back with my insurance. I’m very thankful that my mom is paying for private sessions while I wait, but she should not have to do that. Independence Blue Cross is yet again sitting on their thumb and twirling. I’m jumping through their hoops and doing in-home physical therapy. The pain is horrifying. Unfortunately I don’t have the medications I would get if I were in an actual rehab facility. I just keep gritting my teeth and going for it. We should not have to deal with this crap when we pay good money for actual healthcare insurance. Our country has gone to hell in a handbasket over the last 3.5 years. I’ve never in my life had this much trouble with insurance. I feel like I’m in limbo.

Although I will say that in a way it’s good that I am stuck in my room in my bed right now. We have so many idiot privileged Americans that think they don’t have to wear a mask. Look asshole, you MUST wear a fucking mask. And please don’t tell me you have a medical condition that makes it impossible for you to wear a mask. If that is true, you should keep your sick ass at home during a pandemic. I know brains are in short supply right now with everyone that follows the idiot in chief. And now we have another shit show starting with Kanye West thinking he’s going to run for president. I really hope everyone realizes this is just a ploy, most likely between him and the orange Cheeto to take away votes. But, the orange guy only got in because of the electoral college. He did not win the popular vote! So just like the south losing the war, he lost the popular vote. 

You ignorant people are the reason countries are banning Americans right now. Our country is the laughingstock of the world. And please don’t call yourself a patriot and say you love your country! If you can’t wear a mask to protect others in your wonderful country, then you’re nothing but a piece of shit! I’m sure it’s quite obvious that I despise the idiot in the White House. Not because he’s a Republican but because he’s a vile disgusting human being. If you can’t wear a mask to help your country you are no patriot!

I know my blog is going all over the place today because that’s where my head is. I’m numb right now and I’m not sure why. I am deeply saddened by everything happening in our world right now. My heart breaks with all of the hatred from certain groups of people RACISTS that are being caught on video all over the place. Again I’m probably better off being trapped in my bed because if I were anywhere near these racist “Karen” bitches, they would be laid out on the concrete. I have no time for those disgusting people.

And please don’t come at me with all lives matter. No shit Sherlock we know that. But right now in our country black lives are in jeopardy. And quite frankly all lives don’t matter until Black Lives Matter! I will no longer sit by as a white woman and be complacent about this issue. I have friends that are hurting and I will stand next to them and fight with them! ✊🏻✊🏼✊🏽✊🏾✊🏿

Unfortunately those people running around saying all lives matter really only care about life in the womb. The minute it comes out, you don’t care anymore. I won’t debate anyone on this because it’s right out there for you to see. People are out celebrating the Fourth of July while children are sitting in cages in the United States of America. For those people that think that’s acceptable, you’re a piece of shit. (we seem to have a lot of shit in our country right now don’t we) Plain and simple! I know I know you’re gonna blame their parents. I’m sorry if I lived in a shitty country I would do anything I could to get my children to a better place. If you are a parent who wouldn’t do that, I feel sorry for your children. Well shit, right now I do live in a shitty country. That’s a thought to ponder. 

Let’s see, have I missed anything or anyone?! I think I’m good to go right now. I swear lately I have eye rolled myself into oblivion with all the ignorance that I’m seeing. 🙄 I am sorry, but it’s no longer that we have a difference in opinion, we have a difference in morality!

As always, have courage and be kind! 🖤



Fear · FUCK · HELL · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

The MonSter under my bed is real.

My MonSter is relentless and won’t let me go. I have no way to fight it anymore. There is nowhere to run when it’s your own mind and broken body that scares you. I truly am drowning and there’s no water in sight. I am fucking lost.

I tell people all the time I think I’m going to little crazy. Most people laugh a little because they think I’m kidding. Do you have any fucking idea how it feels to have been lying in the same position for over six years? You have no idea where my mind goes. I’ve had people tell me that I am lucky I still have my mind, my breath. Yeah it’s great having your mind when your body is dead. It’s wonderful to lie here 24/7 – 365 days a year when you have nothing to do but think. I actually had someone tell me that it (being in bed for that long) wouldn’t be possible. They actually made a comment about, “sure how do you go to the bathroom?” Well genius it’s only all over my blog and on my Facebook that I have holes in my stomach for that purpose. The surgery that almost killed me. But if you wanna know how I went to the bathroom before I got the stomas, sure ask me again I’ll give you all of the gory details. Fuck I’m so angry right now. So fucking angry!

The worst part is, my nightmare is never going to end. How many more times can I explain how Independence Blue Cross has killed me? I’m realizing it just doesn’t matter. Trust me, I know that no one wants to hear it about anymore. Fuck, I don’t wanna deal with it anymore.  I am sick to fucking death of all of it! and frankly, the way the US is, I’ll never get help. I’m realizing with everything that’s going on in our world right now that human lives are disposable. It’s money that counts the most. No one is going to have the rehab that I need to have because it costs too much money. My body is slowly curling up onto itself and I have no way to stop it. Without rehab there is no life for me.  without acute care rehab I will never get out of this bed. So really, I’m already dead or I have truly lost my mind. You choose…

Have courage and be kind…

Anger · FUCK · Multiple Sclerosis · Primary Progressive MS · Ramblings

MS Awareness Month day 22

There really are not enough. I’m in a pretty dark place right now I’ve never been afraid of not being able to get out of it. But my problems at this time start with MS and of course that disgusting corporation Independence Blue Cross. I am very angry right now… SOOO angry. They are literally killing me right now by not allowing me the medical necessity rehab and the ability to get to my doctors. How do you people that are bedridden get to their doctors. I know, they go broke trying to pay for it on their own, Because Independence Blue Cross won’t. I’ve barely able to wake up the past few days because the fatigue from the stress and the depression is taking over right now. Fuck Independence Blue Cross fuck, the people that work for them that deny life-saving care just a big fuck you! I really hope Karma finds every last one of you and does her thing. Because you truly deserve what’s coming to you. I’m sorry but to work for a corporation where consciously know that you will be denying people life-saving care, you already have something fucked up in your make up. Because I know I could never work in a place like that, so yes, you’re already fucked up in the head. So sorry if this hurt anyone’s feelings… bahahaha no I’m not! I only speak the truth.

I’m sorry it’s a little dark today, but I can barely keep my eyes open and when they do open the tears just stream down my face. I’m angry and I’m broken and no one gives a fuck.

But no matter how I feel always, have courage and be kind. 🖤

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.

Craziness · FUCK · Health · HELL · Primary Progressive MS · Quotes · Ramblings · Strength

It’s the boredom that kills you

As I am lying here trying to find something on TV, everything just hit me at once. My emotions went all over the place. Silently screaming and crying so no one in my house hears me. How long can one lie in the same spot every day? How many books can one person read? How much TV can one person watch? After a while each thing you do becomes boring. You lie the same way at all times as you can no longer roll your body to either side. I’ve actually had people tell me how lucky I am to be able to just lie around all day and have no big responsibilities. Really? 🤔 Maybe for one day or possibly even a week, but 6 years 3 months and counting… You must be fucking ridiculous! Mental torture is 100% accurate! When people tell me they can’t imagine, they have no idea what they would do, they could never cope, etc. They are 100% correct. They can’t imagine the darkness that goes through my mind every day. They have no idea how many nights I pray to whatever entity is out there to take me home. They couldn’t cope with realizing that death would be a beautiful freedom.

Sometimes I wonder which is more crazy, the thoughts that go through my mind or the fact that I stick around for them. My favorite ‘people’ are those that say, “No you’re not going crazy you’re just upset with your situation.” Oh how lovely that would be if it were that simple. I would love just to be ‘upset’ with my situation. That would be much easier to take. 

Have courage and be kind.

*** just a little FYI, I’m just venting and I hate having to add that but some people, the people that don’t know me, take some things I write in the wrong way. 🙄 If I didn’t get my feelings out, then I’d be worried. Thanks everyone… 



FUCK · HELL · Medical · Multiple Sclerosis · Primary Progressive MS

Broken

I am really in the thick of it right now. I have not heard back from Independence Blue Cross, so I’m in limbo. Most likely I’ll have to call Accolade who is the go-between. We pay so much money for health insurance every year, yet we are not ‘allowed’ to speak to the actual insurance company reps!! 🤔 It is absolutely ridiculous. Independence Blue Cross is 💯% withholding care from me. How can that be acceptable? Independence Blue Cross is really a joke. The incompetence over there is astounding.

I’m tired… But I’m not going to stop… I’m broken… But I’m not going to stop…

Have courage and be kind! < The people at Independence Blue Cross should really take heed of that simple sentence. I really do wonder how they sleep at night. 

Anger · FUCK · Health · Medical · Multiple Sclerosis · Primary Progressive MS · Strength

Manic Monday – Insurance Saga

My lastest dealings with Independence Blue Cross was all about getting phone numbers from the representative at IBX  for non-emergent transport, PT places etc. Today I made my appointment, far in advance, for my pain management doctor. I called the non-emergent transport companies that were given to me from Independence Blue Cross. I know, redundant, here’s why… The first company I called told me they no longer take Blue Cross insurance. The second company I called said they no longer take Blue Cross insurance because they never get paid from Independence Blue Cross insurance. 😳 The third company said, you have to call the week of your appointment and then there are no guarantees that there will be availability. OK well that’s just fucking fantastic! So let’s recap; the phone numbers that I received from the representative at Independence Blue Cross were ALL dead ends. Now I could pay cash for one of them which would be $283 upfront and then $75 an hour for however long it takes for your appointment. Alrighty then I guess I’ll just pull that cash out of my ass. So tell me what the fuck is the point of having health insurance if it doesn’t help you. We pay thousands of dollars for this insurance and at this point they basically have told me to fuck off and die in my bed. I’m not even going to get into calling the physical therapy places, because talking to those people dropped my IQ many points. I just needed to know if they’ve dealt with people that have contractures things like that. Not one of them could answer the question. It was as if they were reading off a script, “All of our physical therapists are very good. They do their jobs well.” OK good for them, that’s not what I fucking asked you. 🤦🏻‍♀️

My first reaction to all of this this morning was to completely snap. But I held it together. I took deep breath’s and started uncontrollably laughing. I am so angry right now there is no way to even measure the anger that is boiling up inside of me. I know more than anyone, that it’s not good for me blah blah blah. But come the fuck on… Cut me a fucking break… Why can’t one thing work out for me like it’s supposed to. Why??!! I’ll tell you why, INCOMPETENCE!! I’m dealing with people that are reading out of a notebook that the insurance company gets them. I’m dealing with people that have no humanity. I’m dealing with people that would be happy if I just took it and died. Well I have news for you Independence Blue Cross, I’m not going anywhere in fact I’m going to be your worst fucking nightmare! This right here is the end of my rope. Please believe me when I tell you, you really have no idea what you’ve done! 

And as always, have courage and be kind! 

Anger · FUCK · Health · Medical · Multiple Sclerosis · Primary Progressive MS · Strength

Manic Monday – Insurance Saga

My lastest dealings with Independence Blue Cross was all about getting phone numbers from the representative at IBX  for non-emergent transport, PT places etc. Today I made my appointment, far in advance, for my pain management doctor. I called the non-emergent transport companies that were given to me from Independence Blue Cross. I know, redundant, here’s why… The first company I called told me they no longer take Blue Cross insurance. The second company I called said they no longer take Blue Cross insurance because they never get paid from Independence Blue Cross insurance. 😳 The third company said, you have to call the week of your appointment and then there are no guarantees that there will be availability. OK well that’s just fucking fantastic! So let’s recap; the phone numbers that I received from the representative at Independence Blue Cross were ALL dead ends. Now I could pay cash for one of them which would be $283 upfront and then $75 an hour for however long it takes for your appointment. Alrighty then I guess I’ll just pull that cash out of my ass. So tell me what the fuck is the point of having health insurance if it doesn’t help you. We pay thousands of dollars for this insurance and at this point they basically have told me to fuck off and die in my bed. I’m not even going to get into calling the physical therapy places, because talking to those people dropped my IQ many points. I just needed to know if they’ve dealt with people that have contractures things like that. Not one of them could answer the question. It was as if they were reading off a script, “All of our physical therapists are very good. They do their jobs well.” OK good for them, that’s not what I fucking asked you. 🤦🏻‍♀️

My first reaction to all of this this morning was to completely snap. But I held it together. I took deep breath’s and started uncontrollably laughing. I am so angry right now there is no way to even measure the anger that is boiling up inside of me. I know more than anyone, that it’s not good for me blah blah blah. But come the fuck on… Cut me a fucking break… Why can’t one thing work out for me like it’s supposed to. Why??!! I’ll tell you why, INCOMPETENCE!! I’m dealing with people that are reading out of a notebook that the insurance company gets them. I’m dealing with people that have no humanity. I’m dealing with people that would be happy if I just took it and died. Well I have news for you Independence Blue Cross, I’m not going anywhere in fact I’m going to be your worst fucking nightmare! This right here is the end of my rope. Please believe me when I tell you, you really have no idea what you’ve done! 

And as always, 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