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.

Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

I had so much hope…

The following is from a Facebook post I wrote exactly 2 years ago today when I was at the rehab Institute at Palmdale regional Medical Center. If Independence Blue Cross had not forced me out after one month I would not be fighting to get the proper care that I need! I found out that if they had asked to put me in a nursing home for rehabilitation they probably would’ve covered it. A nursing home!!! Are they fucking serious! You get maybe 20 to 40 minutes of rehab. In the acute rehab you get 3 to 4 hours. I am so angry because Independence Blue Cross took my life from me when they made me leave. Trust me I’m not naïve. I know it’s all about the money. Or possibly the lotto where they throw your name in a hat and decide who gets care this month. They don’t want us to get well they want us to die. I know I’ve said this before, but how can anyone consciously deny someone life-saving care. I just smile and the fact that, Karma is a bitch and she doesn’t forget. Okay… I got off track. 😜 Again the following is from my Facebook post from two years ago today:

I think I need to say something due to some private messages I am getting. What I’m doing is NOT a cure. There is NO cure for multiple sclerosis at this time. What I am doing is making me feel better mentally which is helping me physically. 💪🏻

I have primary progressive MS. Only 10% of people with MS have my type. I was diagnosed in August 1997 so I know what MS is and what it does to a person. I am not new to this. I was told from the beginning I would get worse it’s progressive and there was nothing I could do about it. So I listened to everyone and believed what everyone said. I basically gave up on me and the person I was and became MS. I feel the need to say it again, I know what MS is and how it affects people. I’m living it.

Some people say it’s hereditary. I’m the first in my family on both sides to have anything like this and I really hope it stops with me. I fully believe when you have MS you have had it your whole life. It just takes something dramatic or life-changing to bring it out. That’s my opinion only but that is how I feel about it.

I basically laid down and let it take me over. I know that my MS is progressive. I know it will always be with me until the cure is found. But I also know that by being in this program I am getting muscles back. I am moving again.

I cannot stress enough how bad I was before this. The last four years I literally never left my bed. The only time I would leave was to go to doctors appointments and that was rare. I was paralyzed from the waist down. My legs did not move for the last four years. When I went to the ER on January 16 my arms had stopped working as well. Only my right arm worked a little bit. On that night I made the choice to not end my life and to get help! It took me losing it in the ER at the doctor for them to finally listen to me. And the doctor did listen and he got me help and now I’m here!

As most of you have seen I am moving my arms now and I’m beginning to get back some of what I lost from my waist down and it’s only getting better. I am done listening to the doctors and to other people that it (physical therapy etc.) won’t change anything. This therapy I’m in IS changing everything! They know I have MS and they are working it around me. Last night I woke up and the MonSter that is MS tried to come through. I told it to get the fuck away from me, that this is my time now. This morning I worked through the feeling and I made it. 👍🏻

MS is different for all of us. But what I’m doing is helpful for all of us. It’s never a bad thing to keep moving. The old adage, move it or lose it, I learned the hard way that it is true.

So, again, I know this is not a cure. But what it’s doing for me mentally is completely amazing. I forgot what it was like to be positive. I have surrounded myself with negative for so long that I thought that’s how life was. It’s not!

If sharing my story helps even person, my journey (even the excruciating pain) will be completely worth it! 🧡

#MSWarrior #NeverGiveUpHave 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.

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… 



Anger · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · Sarcasm · Strength

Round and Round We Go

I’m probably the only bedridden person that can actually jump through hoops. Actually I’m probably not. I got an email, not a phone call, giving me the same information regarding non-emergent transport. Not sure he actually spoke with them regarding accepting Blue Cross as only one of the three actually accept this insurance. I completely understand why the other two don’t, as Blue Cross doesn’t pay! That in itself is disgusting to me. I was told once I found one that could help me that I should call to get pre-certification. Today I did that with the one company that actually takes independence blue cross. But alas, it is not I that calls for the precertification. I called the pre-cert phone number which took me to Accolade, not Blue Cross. Accolade informed me that I need to go through my doctor to show proof that I need an ambulance ride to and from my doctor to be allowed this service. You know being taken by stretcher to and from my doctors. Yeah, because everyone wants to go by stretcher to their doctors appointments. Are they fucking kidding me?! The Accolade rep did help me out by calling and taking care of all of this BS for me. The first person that actually helped and has done what they say they’re going to do. And she isn’t even a Blue Cross employee. As of now, I have an appointment on the 28th and will be picked up at 7:30 AM so I can finally see my doctor again. But, I’m not holding my breath.

I wish I could say that I am no longer stressed regarding this, but this is only the beginning. I need to get to my neurologists office as well as my urologists office. I had to put off surgery to remove all the bladder stones because of my inability to get out of my bed. Yes I will say that again, I had to keep putting off my surgery because I could not get out of my bed and was turned away from Independence Blue Cross for inpatient rehabilitation. I wonder, do I have to go jump through these hoops every fucking time I need to see my doctor(s)? Do I need to prove that I need to go by stretcher again and again? I truly am disgusted by Independence Blue Cross. ^^ Me, every time I have to talk to these people and every time I have to send an email when they cannot return an actual phone call. And I will say it again and again, how the fuck do these people sleep at night knowing that they are withholding care from another human being that needs specific care?! I will get my inpatient rehabilitation! I will get the care that I need! I will not allow this despicable company to be in charge of my health care over my own doctors!  People we need to stand up and say no more! We need to write to our representatives, call them out, acquire an attorney if needs be, we need to say… We are not going to take this any more! Do I seem angry, a little pissed off… You have no idea! 

Have courage to those who try to keep you down, and be kind!! 

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

Down with the Sickness Tuesday

Yes we do. My daughter was diagnosed with type A flu yesterday. People at my husbands work we’re also diagnosed type A flu. On Sunday I was not feeling very well. Yesterday my fever was going from 100 up to 102 and finally broke at 2 AM. NyQuil take me away! Oh that stuff is the bomb. You need nothing else.

Unfortunately I’m pissed. I called my neurologist because in the 23 years I’ve been going to him since diagnosis, I’ve always been told to call when things like this happen. Being that I have a compromised immune system and I’m over 50 the type a flu can be dangerous. I put in a call to my doctor last night. The receptionist said, “You know this is a neurologist office right?” No really? Oh my God I had no idea! 🤦🏻‍♀️

I felt like saying you know you work at a neurologist office and things like this can be very dangerous for people with a compromised immune system. But, I didn’t. She sent me off to leave a message with my doctor’s nurse. I left a message I heard nothing back. I just called a little bit ago I left another message. A little more blunt and to the point. When (If) they call back I’m also going to remind them about a medication refill I called about sometime ago and a fax that they needed to send out for me. Neither happened. I would’ve forgotten about those things if this hadn’t happened and upset me so. After 23 years with this doctor today I’ve been looking for other neurologists. I really need to get to UCLA but until I can get out of my bed without pain, I don’t think my insurance company will cover a non-emergent transport. What do people like me do? How do people that are bedridden get to the doctors and get the help they need? Sadly, I don’t think it matters… sadly I don’t think we matter…

Have courage and be kind!