Tag: Sadness

Happiness · Medical · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

FaceTime visit with my doctor!

Tracy2 Comments

I just had my FaceTime with my neurologist. He is going to get with Dr. Nasser (pain management doctor) to discuss rehab options. I’m not going to worry about that right now because with everything going on coronavirus wise, it’s going to have to wait anyways. Once all this is said and done though, he and Dr. Nasser will most likely be going after my insurance company to give me the care that I need in order to save my life! 

I told him I want to reevaluate my fracture at L1 and he said we will definitely look into that. I think I’m gonna have to look into that on my own because it’s kind of everyone’s neglect that they didn’t notice it when I fell 6 years ago. 🙄 So I think that’s gonna be for me to figure out. LOL I also need to find an Osteo doctor because I also have a fracture at L4 that shouldn’t have happened. So I need to have my bones checked. That sounded a little kinky. LOL

We have a follow up in June. 👍 So now that that’s out-of-the-way, both my main doctors, I will be looking for some good mental health clinics and/or physicians.  I have called a couple but of course none of them take my insurance. 😡 I’m not giving up because I know I really need to be able to talk to someone.

I hope every person reading this is having their best day possible.

Have courage and be kind.

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

Mommy pay attention to me!

Tracy2 Comments

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

Tracy4 Comments

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.

Quotes · Ramblings · Sadness

The greatest loss of life

Tracy10 Comments

This must’ve been written for me…

I’ve been dead inside for years. 



I realized today waking up at 12:30 PM that there’s no real reason for me to wake up. I do nothing all day but watch TV, play games on my phone, and watch people living their lives on on social media sites… and I continue to lie in this bed. Six long years going on seven. Is that really living?

Have courage and be kind…

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

The MonSter under my bed is real.

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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…

Fear · HELL · Loss · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness · Strength

Hope can be paralyzing…

TracyLeave a comment

My favorite quote was once:

When do we finally say enough?

I’ve been trying for six years to get out of this bed. I thought I had a chance in 2018 and as you’ve heard, Independence Blue Cross took that away from me. I have to let go of hope because it has broken me. It has, paralyzed me. I was taken right up to the edge of hope and slowly watched it all fade away time and time again. How much longer do I lie in this bed? How many more nights do I cry because of the pain in my legs? It’s a torment I can’t break away from. It’s a nightmare that I can’t awaken from. I just really want to get off this ride because I don’t really like it anymore.

Then I see these quotes ^^ and think, I get it but for some of us our present situation is our whole life. There is no best yet to come without help, and I can’t get that help. I get it, I have breath, but breath is not life. It’s an existence that I’m tired of living. I am a literal, head in a bed. I’m tired, I’m tired, I’m so so very tired…

Have courage and be kind.

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

MS Awareness Month day 29

Tracy2 Comments

I know that living in the past or thinking about the past is something that we should not resign ourselves to do, but I really do miss who I was before. I was someone who loved working. Grocery shopping, in my book, was one of the best things to do. I know, I’ve never said I wasn’t a little strange. But, laundry is what I really miss doing. And no, I’m totally serious about this. I think it’s all about the fresh smells, the warm clothes right out of the dryer, and even the act of folding things was fun for me. The weird thing is before I never thought about any of these things. I never realized why I did not mind doing these things. So I guess MS has taught me to look at things in a different light, a different perspective. Out of all these things I miss, driving is definitely the one that kicked me down the hardest. Driving was an escape, freedom, something I loved doing. When I lost that privilege, I was broken for quite some time. I could say that I will never drive again because at this point it’s probably true. Instead though, I can keep wishing and hoping that one day I may drive again. Yes, again I’m pretty sure I’ll never drive again, but it’s always so lovely to dream. 🖤

So as I wrote the above I kept thinking to myself, what I really miss is being able to do ‘anything’. We’ve been trying daily for a shower and it still has not worked. I did have a really good bed bath though, so I do get clean. 😇 We are starting slowly with my husband rolling me over on my side for 20 minutes to a half hour. It really fucking hurts, but each time it seems to be getting a little easier so maybe one day it won’t hurt at all. When I talk about what we’re doing my mind starts taking me to that bad place inside that discourages me. The feeling that it’s never gonna happen no matter how slowly we go. I’m thankful that I’m feeling it and acknowledging it straight away, but it’s still scary for me. You see, in my mind, when I see myself I’m not trapped in this bed. I see myself rolling over and sitting up and walking. It’s almost like a dream, but that’s what I see in my mind, my heart. I’m going to keep dreaming and maybe one day it won’t just be a dream.

Have courage and be kind.