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

Mommy pay attention to me!

My appointment with my pain management doctor went well yesterday. We are looking into at home rehab, when the world isn’t so crazy. I decided that I will talk about a baclofen pump. I really did not want anything else embedded into my body, but if it helps me get through my leg spasticity and helps with pain, I’ll do it. I was just concerned because I already have a PowerPort, my colostomy, and of course my urostomy, on my and in my person. I have to do what helps. We are going to work very hard on getting my legs used to sitting in my wheelchair. The swelling is awful when I sit for too long. I am finding that as long as I have my Forrest Gump shoes on it is not as bad. I will have to invest in some good compression socks. With my husband home for a while, thanks to COVID-19, we’ve been trying to move my legs more and more every day. It will be a process because I have been stuck in this bed for six years.

I have my neurologist appointment today at 1:45 PM. That was very cool of them to get me in right away since yesterday they had to cancel. Thankfully their computers are back up and working! I have my list of questions that will be open and ready when the call comes through. Wish me luck! 

I contacted JS at Independence Blue Cross today regarding my transport to and from my doctors as I received another explanation of benefits saying it was denied etc. It seems he is taking care of this and I will wait before sending my appeal in. if you’re reading this JS, thank you! 

This is my baby girl who never leaves my side. She is wondering why I’m not paying any attention to her today. But I’ve had some things to do this morning. 😁 I know that once she gets her c-o-o-k-i-e she will be very happy. I have to spell it out or she would’ve known exactly what I was saying. 

Now I have some time to surf around the Internet before my appointment. I can’t believe I have gotten everything done before noon. I even ate breakfast and had my coffee. I did have a little bit of a low last night. A big shout out to my husband for talking me down. I love you more than my luggage! I hope everyone is having their best day possible. If not remember it’s just a bad day, not a bad life.

Have courage and be kind.

Health · HELL · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

To the people that I cherish so much

I feel I owe explanation of what’s going on with me. In August when I was denied rehab my heart broke and my mind fractured. When I got the explanation of benefits for the ambulance ride that was denied I felt completely betrayed. Jason Sweeney the executive at Independence Blue Cross, gave me those names of those companies to take me. Then after I was taken to my doctors he explained they don’t cover that Service. I have a very hard time dealing with incompetence and stupidity. And now I’m having a very hard time continuing to live the way I do.

I no longer want to exist. Let me explain when I mean by that, I can no longer live trapped in this bed for another six years, another 20 years. The pain I suffer on a daily basis is enough to make me want to leave this earth. I came very close two days ago to leaving. Moving my toes hurts, raising my arms hurts. It’s as if there is no end in sight. As of right now I can barely even move my arms. Thank the universe for talk text. I think that’s when it all came to a head.

Now I will backtrack a little bit to maybe help explain more of what’s happened to me in the last two years.

In February 2018 I came to the conclusion that I did not want to live. In that instance I called an ambulance and said I needed help. To make a long story short they got me help. They got me in the acute rehabilitation center at Palmdale regional. For one month I was there and I was getting better. But Independence Blue Cross decided they didn’t need to be there anymore so they kicked me to the curb. A couple times in-home therapy came but unfortunately he rarely showed up and when he did, he did nothing.

August 2019 we were trying to transfer me for a shower we got me in my Hoyer lift and the pain was so bad I thought I had broken another bone in my back since I already have two fractures. Thankfully there were no breaks but while I was at Palmdale regional Medical Center we tried getting me back into rehab there. Independence Blue Cross denied the request even though a previous they approved it.

So this doesn’t go on till the end of time, here and here are more of the backstory of trying to get into Palmdale regional medical center.

I will be sending this along with my denial letters (with highlighted comments and lies from Independence Blue Cross) and other correspondence to anyone who will listen. LA Times, NBC, CBS, ABC, Oprah, Montel Williams, Ellen, anyone that would like a good story on how insurance companies knowingly and willinglywillingly kill The people that rely on their care. I will also be doing research on how many people have perished because of Independence Blue Cross.

But again, I will not live another six years in this bed. Understand that as you will, but I am not living already. I’ve been dead inside for six years.

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 · Craziness · Medical · Multiple Sclerosis · Primary Progressive MS · Strength

My doctor transport saga continues…

So… the only way I can get to my doctors is by gurney transport. I got the name of the people I used from the representative at Independence Blue Cross. I sent him the receipts explaining that it should be done at in-network rate blah blah blah. I received my explanation of benefits and it looks like procedure codes are missing etc. Seriously! 🤦🏻‍♀️ according to this they’ll only pay $100?! I don’t think so! I got the names of this service from the person that works in the executive offices at Independence Blue Cross. Then after I took these trips I was told that they don’t even cover these trips at all. WTF!! 😳 I’m dying over here at the incompetence of the people that work at Independence Blue Cross!



Oh my gosh and I almost forgot… so during this time I guess they will allow me FaceTime/phone appointments with my doctors. Although we’re not actually sure yet until they call my insurance company. So, if you’ll allow this now, why the fuck can’t I do FaceTime/phone appointments with my doctors all the time! I have a need for this, I am bedridden! I am unable to get out of my bed because Independence Blue Cross took me out of rehab much too early and fucked my life. And as we know they’re denying me rehab and have been denying me rehab since August of last year. I’ll be finding out in the next few days if in fact they will approve or deny my FaceTime/phone appointment set for next week. Independence Blue Cross, you damn well better allow me these over the phone appointments now and for as long as I will need them! 

So I’m going to be calling all of my doctors and getting over the phone appointments right now. I will also be getting my doctors together to get rehab going again! And NO Independence Blue Cross, my rehab won’t be done in the nursing home it will be done where I need it to be done, in an acute rehab facility! Are you so daft that you don’t understand I’ve been bedridden for over six years I need real help, not 10 to 20 minutes every couple of days!  Your doctors that work and get paid for by your company are incompetent buffoons if they don’t understand this. Money over human life! You’re all disgusting!

Have courage and be kind.

Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

This is my unapologetic truth and fuck you Independence Blue Cross

I’m trying really hard to find my way back from my depression. But right now my demons are circling around me and they’re not letting go. When Jason told me that I am not covered under my insurance to get to my doctors appointments, I think that was the straw that broke this camels back. First they deny me the only thing that will save me, Acute rehabilitation, and now they’re literally keeping me from my doctors. How do people that are bedridden afford to get to the doctors? I cannot pay $400 to $500 every time I need to see my doctor. The following picture is something that I never really wanted to share but these are my legs. I cannot bend my ankles so my feet are what I call, ballerina feet. I cannot straighten my knees. And as you can tell my legs flop to the sides and I cannot turn them so that they sit properly. This is what six years of being trapped does to you when you have doctors that don’t help you and insurance companies that keep you from getting the care you need.

Let me explain how painful it is when my legs decide to tense up. My feet get even straighter and my toes start to curl and there’s nothing I can do to stop it because I cannot sit up to grab my leg or to rub the area that’s hurt. Because I can’t sit up on my own. As I’m talk texting this it’s hard to see because I haven’t been able to stop crying since I was told by Jason basically, fuck you bitch. I mean basically we’re not gonna help you get your legs back in order. Without rehab nothing is ever going to change for me. I’ve had people ask me how come I didn’t realize this was happening to me. I’m not a fucking doctor dickhead. It wasn’t just one thing that led to this. The following pictures happened soon after I became bedridden. The surgeries for my colostomy and urostomy fucked up. I’m still pissed off that they saved me because I was really hoping they just would’ve let me die when it went bad.



I had the surgery June 10, 2014. it took about four days I guess for a nurse to realize something was wrong so they opened me back up and I had to have a wound VAC to close the hole in my stomach. So for 11 months after the depression was completely and utterly consuming. Because of the problems they had with the colostomy they ended up giving me an ileostomy. That was probably the worst thing that could ever have been done to me. I told them that if they did not fix it when my first wound heals up, that I was leaving earth because there was no way I was going to live with an ileostomy. Now if I were able to move and do things I might not of felt so drastic about it but when you’re trapped and everyone else has to fix it for you, maybe you’d understand. 11 months after they redid the surgery, and it worked but that surgery also needed a smaller wound VAC and the depression again was fucking terrible! So let’s recap… I fell on October 10, 2013 (became bedridden) the following year June 2014, I had the surgery which I wish had killed me, then in 2015 I had the surgery to fix the fuck up. So for the next two years I thought I had to come to terms with having a colostomy and urostomy. Unless you’ve been there you have no fucking idea what it makes you feel like. I still to this day do not like to look at my stomach. You really have no idea how badly I wish I had died in that original surgery.  for the more graphic and full story you can check out my post here.

I know that some of this makes no sense at all because it still doesn’t make any sense to me. I now have no fucking idea how I’m supposed to get to my doctors. They canceled my bladder stone surgery until April 29. Of course I knew that was going to happen, but now I have no way to get to the pre-op appointments for the bloodwork, x-rays, urine samples, everything they need before surgery. I really believe that this is independence blue cross’ way of telling me fuck you bitch we don’t give a shit whether you live or die. Basically we’re not going to help you. We’re not gonna help you get the care you need, we’re not going to help you get to your doctors appointments, and even if you do get to your doctors appointments we’re not going to give you the care that your doctors want you to have. I know that was a huge run-on sentence, but I talk text so it’s as if you and I are sitting there talking with each other. 

I’m really trying to hold on here. I’m really trying to find my way back to the light, but my demons have their closet me right now and they are not letting up. Unfortunately for my demons they don’t realize that it’s when I’m pushed to my limit, when I am shoved headfirst into the ground, that I will rise again like a phoenix. It may take me a minute but I’ll get there and God or the universe or whatever you believe in, help anyone that has tried to keep me down. Because when I come back, I will come back with a vengeance.

 

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

Oooo Ooo Memories

Another Facebook memory popped up. Wow… I was working so hard, and for what? Independence Blue Cross kicked me out after 30 days. At that time I’ve been bedridden for over 4 years. Did they really think it would be that quick? Their doctors truly are incompetent if they don’t understand what happens to a person’s body that’s been bedridden. They obviously don’t because they denied me life-saving care. And again when I say life-saving care, I’m not over exaggerating. At this point I’ve been in this bed over six years. I’m not going to spend another 6 years in this bed. And whatever happens, it is totally on them. Good or bad…

AnyWho… On to the memory:

Hello to all my amazing friends. I’m asking yet again for your help. Tomorrow is the big day when we find out if insurance will give me another week. Please keep me in your thoughts, blessings, prayers, cross your fingers and anything else you may do. I’m trying to keep positive and send out good thoughts to the Universe.🤞🏻

I’ve made some excellent strides in the past two weeks. While I can sit up unattended by myself, and my legs and arms have gotten back some movement, I still need to be able to transfer on my own before I go home. I’m still not able to get up into the sitting position by myself and I still cannot hold my weight on my legs. It’s like they’re explaining to me, I was completely bedridden for four years. It’s not going to change overnight and I have to keep positive thoughts for a good outcome.

I’m one of those people that wants it done like yesterday. 😜 Type A personality all the way.

So send me some good juju and hopefully tomorrow I’ll have some good news! 🧡 No matter what happens I will continue to fight the MonSter that is MS.

#MSWarrior #PrimaryProgressivemultiplesclerosis

A little sidenote, if there’s any wealthy beneficiaries out there, hook a girl up with some real care. 😏 OK, just kidding… Or am I?

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.

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

Hope Hope Hope

Two years ago I had so much hope. I was in the rehab and I was getting stronger. For the next three weeks or so I’m gonna be seeing all of these posts. And every time it comes up in my Facebook memories it feels like a punch in the stomach. They kicked me out too soon and there was no follow up. We tried “at home” physical therapy, and it was a joke.

If I had had two more weeks I probably could’ve gotten to the point where I could transfer myself to my chair.

I really did have so much hope but sadly I’m finding that hope is paralyzing. Have courage and be kind…

*** there will be an update tomorrow night regarding my transport to and from my doctor. If it wasn’t happening to me I wouldn’t believe it. 😢

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.