chronic illness · healthcare · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

They don’t know who they’re dealing with.

It’s been a long time, again. I did get a TeleMed with UCLA, which went quite well. I am still trying to figure out where, and how to get the MRI he would like. Of course, it’s insurance issues. But that’s another blog. 😜

I had an appointment, 12/20/2023 with my primary care doctors. We got x-rays of my hip, I had another DEXA scan, urinalysis, and a few other issues. I did all these tests and on 01/17/2024, I had a TeleMed to go over those tests. My DEXA scan showed that my bones are still really bad. I asked if they were any better from the original DEXA scan in 2020, but they didn’t know because they did not have all my records. That’s number one… Then we went over the hip that had previously been broken at the hospital, because that hip has caused me pain since the surgery. They had no idea that my hip had been broken. That’s number two… Then they asked me why I was confined to a bed! That’s number three… I’m sorry, but I’ve been going to these doctors for a long time and they knew nothing about my MS and that I was bedbound. No original DEXA scan to compare this DEXA scan that had to be done in order to continue the medication and get refills. And they have my records. How did they not know about my hip? 😳

At the time I should’ve said something, but when you have to be transported in a gurney, for me, I have no confidence and I would rather just hide under the covers. Also, at the time no one was wearing masks. I was dumbfounded. This is a doctors office for fucks sake. And wouldn’t you know it, I got Covid for my very first time, thanks to that visit. I went to the hospital about three times in 2020 when Covid was in its hay day and never once did I get it. That’s when they were wearing masks and sanitizing and doing the things that need to be done especially if you are going to be around people with chronic illness. I’m sorry to go off track but that will be another blog. 🤭

Today, 01/22/2024, I got up my courage and called the doctors office and said that I needed to know what the difference is between my 2020 DEXA scan and my 2023 DEXA scan. I told them I need to know if I should stay on the medication, or if there’s a medication we can change. They had spoken to me about Prolia on my gurney visit, 12/20/2023, and I explained being bedbound I can’t be on that as you have to be weight-bearing. That’s when they asked why I was bedbound. Really!! Read my charts. I said I really needed to know what the comparison is since they told me that my bones are (still) really bad. I have to say the young lady on the phone was very good and professional. She called me back after speaking with the doctor, and told me that there really is no real change. I then asked what I should do about medication. Should I stay on the one I’m on, since it doesn’t seem to help, or change to something else. I guess the doctor didn’t have any other information so she’s going to have to get back to me again. I don’t understand why they said nothing about my medication and if I should keep going with it.

I am trying really hard to stay positive. Since being told on the 17th that my bones are (still) brittle I’ve been afraid to move too much. If I’m truly being honest, I’ve been afraid since 2020 regarding my osteoporosis and having such brittle bones. I have four back fractures just from sitting up and a broken hip just from being rolled over for a surgery. Since receiving the call, saying there’s really no change, I’m scared. I think now I’m going to be even more afraid to move at all.

Now that I got all that out… I will keep fighting. The only way any of this will change is if I get the help I need. Real help, not the help that the Independence Blue Cross doctors think I should have or not have. I need to be somewhere, such as an in-house physical therapy rehab, so there’s people there that can help me and that will understand that we need to be careful because of my bones. I know it will never happen because my insurance will not pay for it, and my doctors sure as hell won’t fight for me. It will probably take 2 to 3 months to be able to get back in my sling to be able to transfer to my wheelchair. As we all know from previous blogs, that’s not gonna happen. Now I will have to figure out how to do this on my own. I truly believe where there’s a will there’s a way and I will not stop trying and fighting for myself. Today, is not a good day, but it is not a bad life. Always remember, hold on!

Remember, have courage and be kind! 🖤

Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Strength

We all need a little help sometimes.

Tomorrow at 9 AM I have my first Zoom counseling appointment. I was getting concerned because ComPsych kept calling and telling me they hadn’t been able to find someone. This morning that changed. I’m a little nervous but I think it’s going to be a very good thing for me. We need to let people know that getting help is nothing to be ashamed of.

It truly is OK to ask for help! And please, if you or someone you know is in crisis, call the National Suicide Prevention Lifeline.

Have courage and be kind! 

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.

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.

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

The Fabulous Insurance Saga Continues …

I would love to say that Independence Blue Cross is actually ‘working’ for me and that we have gotten my non-emergent transport taken care of. Unfortunately that’s not the case. I’ve actually been to a couple appointments using the non-emergent transport. Sadly I see future problems with this. When I called to get the pre-certification for transport I was told I wasn’t the one that should be calling 😳⁉️ I was informed that my doctor needs to call every and explain that I’m bedridden thus needing the gurney transport. Are they fucking kidding me? My doctor has to stop his practice to contact this ridiculous company to tell them that I am in fact, bedridden and need this service. Again, are they fucking kidding me? So I put a call in to Jason to see what we could do about this. We spoke for a couple days as he was trying to find out the correct information for me regarding pre-certification. On March 6 I was told he would call me back on Monday, March 9 and let me know how I go about it. My doctors appointment was for March 13 and he never called me back during that week. 🤔 My appointment at my doctors was on Friday the 13th. I was not going to cancel my appointment, so I went ahead and got my transport and will definitely be billing them for that trip as well. The total now out of my pocket thanks to no help from my insurance company, is $940. 

Should I have called him and asked why he wasn’t calling me back? That’s a big no. When someone tells me they’re going call me back, that’s what they’re supposed to do. I’m shocked at the incompetence of Independence Blue Cross and they are rent-a-docs and their employees. The worst part about all of this is it’s seriously is fucking with my health. I know I sound like a broken record, but without rehab I have nothing. I think it’s finally time I either, shit or get off the toilet… I know that analogy is not the best but 😂 I really am not over exaggerating when I say this is life or death for me. I think maybe it’s time I go public. I think it’s time I show people what companies like Independence Blue Cross do to people who truly need their help. I think it’s time I take back my life, adjust my crown, and remind people who the hell they’re dealing with.

I know this blog is kind of all over the place but I really feel like I’m losing my mind. I know I’ve said this before but I really feel like I’m on an episode of punked. Real life really is stranger than fiction. I just want to get better. I just need the proper medical help that my doctors feel I should have. Sadly no one gets it until they get it and the way these people are making me feel, I hope they do get it. 🤭 I really don’t like feeling that way but I do believe that for every person that is keeping life-saving medical care from me, because they’re putting money first, Karma will be introducing herself at some point. Good luck! 

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.