Anger · Fear · Health · healthcare · HELL · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Quotes · Strength

And here we go again…

Oh Independence Blue Cross… You’re just disgusting! Seriously how do the people that work there sleep at night knowing what they’re doing to people on the other end. They are now telling me that I may be billed $5670.09 for my hip surgery because it was not pre-certified. So I guess I should’ve called them a couple days before my hip was broken to let them know that my hip was going to break. 😳 I know it’s not as simple as that, but come the fuck on! I seriously feel like they have my name on a list and it says, fuck with her so she goes crazy and dies. 😈

And contrary to what HR at my husbands work said, they only offer Independence Blue Cross and Kaiser, NOT United healthcare. And Kaiser doesn’t have an MS specialist so I am stuck with Independence Blue Cross. I will be looking into Medicare part B. We can’t really afford it, but I’ve got to do some thing.

I’m still trying to figure out why Comcast benefits called me directly. I think I’m going to call them back again and find out why. 🤔

I also had to send in an appeal for the ambulance ride in May after my suicide attempt. 😪 It’s really disgusting all the hoops you have to jump through when you have a chronic illness. Money is more important than human life. It doesn’t pay to be sick.

Anger · Fear · Health · Medical · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Strength

Tell me I cannot do something and I will show you that I can…

When that idiot of a doctor told me via FaceTime that there’s nothing more they can do for me, I am end-stage MS, and he’ll put in a call to hospice, I almost said “you’re right!” But after talking to some amazing friends and getting the best support in the world, he can kiss my fucking ass! Dr. Kareti at AV Neuroscience, you seriously pissed off the wrong woman. Telling someone over the phone that they are at their end, in a sense, was about the most disgusting thing a doctor could do. Aside from the fact the whole time he was shuffling papers on his table and talking to a nurse, what he did was unconscionable. What if I had been alone? What if I had no support system? He quite possibly could’ve sent someone over the edge by doing that. 

Now, I’m gonna show him just how incompetent and how wrong he is! Tell me I can’t asshole… I’m gonna show you I fucking can! You’ve just given me more strength than you know. I will admit that I was frightened of the places my mind went to after the phone call. But I made it through with so much help from my friends! I’m going to keep going even if I have to crawl.

I’m going to Keep fighting. One things for sure is I’m not going to be silent when I don’t receive the best healthcare possible. I have a remote call with my pain management doctor today and I will be informing him of the conversation I had with the neurologist. I’m curious to see if he’s going to agree with him or not. 

I’m tired, I’m scared, I’m frustrated, I’m angry, but the warrior in me is going to rise from the ashes, just like the Phoenix!!

Have courage and be kind.



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

Round and round and round we go…

I am in a mood and somehow I can’t find my way out of said mood. Still awaiting Physical Therapy to be covered by my insurance company. Is it any wonder that I’ve heard nothing from Independence Blue Cross? I barely reimbursed half of the money back from the transport company they told me to use. At this point they are denying me the ambulance trips with AMR and the hospital visit. I’m getting bills from that amazing time that I’m going to collections for it. 😳 Sorry but you can’t squeeze blood from a turnip… or some shit like that. I guess they don’t feel suicide is an emergency. I’m sorry, attempted suicide.

Months would’ve been easy, my waiting is moving on into my seventh year. That light at the end of the tunnel that was starting to come into view, is now flickering. I truly believe I have to keep fighting but I also understand that things may never change. I have to learn to be able to wrap my head around how my life may have to be. I’m not giving in, but I do have to be a little more realistic. I’m tired. My mind is tired. My body is tired. My soul is tired. 

Fuuuuuuuuck

Have courage and be kind.

Health · PAIN · Ramblings

Baby steps

Today’s fun is trying to get my ankles used to wearing my Forrest Gump shoes again. 😂 It’s been a while and I think my legs are going to be pissed off at me tonight. 🤷🏻‍♀️

Tomorrow we will be trying to get me in the chair again. My lower back is still hurting really bad so we didn’t want to push it today.

And now I’ve had these on now for 2 1/2 hours and I think that’s long enough for today. 

Baby steps… 🖤

Have courage and be kind.

Fear · Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings

We can’t do it alone…

Since my husband’s been home thanks to the corona, we’ve been moving my legs more and more. It’s all been leading up to getting me into my chair. Today was that day. I wish I could say that it worked and I got into my chair. But I can’t. The pain in my lower back, my hips, and my knees was so excruciating I couldn’t do it. I was scared we were going to fracture another bone in my back. I’m so angry and bawling like a little kid. I’m angry at myself that I just didn’t bite the bullet and have them throw me into my chair. The pain was/is worse than the contractions I experienced giving birth to my son. 😢

We will try again, hopefully tomorrow. But after today, I’m scared… so scared. It really feels like I’ll never get out of his bed. I am bedridden in every sense of the word. I know I say it all the time, but wow, did my doctors drop the ball in 2013. And wow, did Independence Blue Cross fuck me in regards to Rehab. It just sucks knowing that there is no way to get help. We can’t do it alone. I’m thankful that tomorrow is my counseling appointment as I’m falling apart right now. I’m so disappointed in myself that I couldn’t do it. I know I shouldn’t be, but I am.

Oh well…

Have courage and be kind.

mental health · PAIN · Primary Progressive MS · Ramblings

Letting go…

This is tough for me. I can see myself sitting up and moving around my room. When I see myself, I still see the kid that I once was. I have cried so many silent tears for all that I’ve lost. Believe me, I have tried to move forward and truly accept my new normal. It sounds easy enough, but it’s so very hard. I think the boredom gets to me after a while. It’s almost seasonal in a way. It feels like every three months or so I fall into a depression. I’m trying to recognize the signs of my downward spiral(s).

I constantly fight with everything that I feel I should have done when I fell in 2013. Why didn’t I scream at them for rehab, why didn’t I try harder, etc.? I’m learning to forgive myself for that. There was nothing I could’ve done as I’d never been in that situation before. My doctors dropped the ball. I’m trying to let go of the anger.

I’m going to discuss this with my therapist on Thursday. I think it’s something that has been festering for so long. I have to get it out. I feel like I’m all over the place right now, so I will end here. 🖤

#LettingGo #ChronicIllness #PrimaryProgressiveMS #TheBedRiddenLife

Have courage and be kind.

Fear · Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings

You’ll get through this!

I have made it through a couple times where I didn’t think I was going to make it. I wish I could say that it’s going to be OK, but I don’t know. I’m trying really hard every day and hoping that something is going to give. I just can’t go another 6+ years in this bed. I’ve had to learn patience, which has never been one of my virtues. I really want to stay positive but I don’t see me getting the help that I need. I’ve been in this bed for over six years and my body has, well, died in a sense. It’s going to take a lot of time and a lot of hard work to make my legs go back to a normal position. Unfortunately, we don’t have the money or the good insurance to get the help I need. And in this moment in my life, unless you’re trapped the way I am trapped, I understand you’re not going to understand. I know, blah blah blah. I just needed to vent it out. I’m struggling, but I’ll get through this. I’ll get through this to wake up trapped again. But, I’ll do it because that’s what everyone wants. OK, that didn’t come out the way it was supposed to, but I think some of you understand.

My legs are jacked the fuck up. I can’t straighten my knees or bend my ankles properly. I’ve been stuck in this bed for so long as I sit up, in my adjustable bed, I get dizzy. My body has literally died being in this bed. Ten to twenty, and I’m being generous, physical therapy visits won’t do anything for me. I can’t sit up unless I have help or something is behind me. But like I’ve stated before, Independence Blue Cross took me out too soon from the rehab. I was sitting up on my own. But when you get kicked out of rehab and you get no good in-home physical therapy, it all goes away.

Yes I know it’s obvious I’m struggling. I just am not sure how to wrap my head around it all. I can’t see the light at the end of the tunnel anymore and that’s what scares me. But I’ll keep fighting and hopefully one day it will take me to where I need to be.

I’m sorry if it’s all over the place right now. But I can’t get my thoughts in order so, there it is.

Have courage and be kind.

Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

We have to keep going!

We must keep going… I know that know. Although, it can be so hard to do. The home health nurse came over last week and now I’m waiting for the physical therapist to call for an appointment. We are not sure how many appointments I’m allowed through Independence Blue Cross. Sadly, it probably won’t be enough. Again, I’ve been in this bed for over six years. The damage done is much more intense than a few at home PT appointments. All about the money and giving their higher-ups bonuses at the end of the year. Meanwhile, I’m trapped in my bed thanks to, in part, Independence Blue Cross. they kicked me out of inpatient acute physical therapy in 2018 too soon, and now they won’t give me any proper care. According to Independence Blue Cross doctors, it’s not needed. My family does as much as they can, but without real help… I really feel like I’m going to be stuck in this bed for a long time. Unfortunately in the world we live in today, insurance companies run our healthcare. Profits over people. I’m still waiting for them to give me my money back for the transport services. With everything going on the world right now, we could really use that 900+ dollars back. Greed prevails… 😳

I’m trying really hard to keep going. I believe I will, but I just need help. My counseling appointment went really well last Thursday, and I will be talking to him again this Thursday. So that’s a plus.

I’m still feeling quite a bit lost but this time I am reaching out. It’s gonna be a long process but I have to keep going. 

Have courage and be kind.