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.

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!!