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.

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.

Fear · Health · HELL · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

Suicide – It’s Time We Talk!

The dreaded “S” word. Weak, selfish, going to hell for eternal damnation… just some of the things you ‘hear’ when the word suicide comes up. None of those things are true when we talk about suicide. And we need to talk about it. A person who commits suicide is no more weak than you or I. A person who commits suicide is no more selfish than you or I. As for going to hell for eternal damnation, well, if you believe that I feel very sorry for you.

There are two things I know about writing this blog. First is that I am not a writer. I was a Business Major, no English for me. Well you know what I mean. The second thing is that I’m afraid. I am afraid of what people may think of me. But I’m also empowered, and that’s what I’m feeling by writing this blog. The people who try to or do commit suicide are in the depths of despair. They are drowning in the abyss of whatever pain has brought to their life. They feel a burden to all those they love around them and they want to try and make it better for them. In their minds they believe that by not being there that their loved ones will be inevitably happier. And yes, they want to stop their endless pain, whatever that may be. I am sure there are some reading this thinking, “What does she know about it, how can she make these statements.”  Well you see, on Mother’s Day, I tried committing suicide. And if I’m being completely honest, this wasn’t my first rodeo. So yes, it’s time we talk.

The total despair started on Friday. I’m not sure where it came from I just felt so lost and so much of a burden to my family. So I overmedicated a little bit on Friday then a little more on Saturday and on Sunday well… Monday is completely lost to me. Tuesday the vomiting started. I wasn’t sure what was happening. You see I don’t remember much of what I did I just remember looking over at my medication and realizing that 2/3 of the bottle was gone. there were over 120 pills in that bottle. So then I started piecing together what happened. The moment my daughter came in the room to comfort me as I was vomiting, was my literal wake up call. I was mortified. Then I realized it was my husband and my 27th wedding anniversary on the 8th, that I had completely forgotten about. WTF!! 

To my family it was a normal weekend with mom basically sleeping. So they had no idea what was happening. Back at the moment my daughter came in the room I realized it was time to talk. I told my husband what I thought was happening to me and that I needed help. I called my mom and told her what was going on. To my complete surprise I had called her and told her I was going to do something. She had immediately called my husband and he checked on me but he had no idea about my medication. And because sleep is my only freedom my family doesn’t try and wake me up when I am sleeping. I’m pretty sure that will change now. 😊  I guess I told her that I was writing letters to my family. And again, to my complete surprise, there were some notes on my phone. I will fast forward a little bit to Wednesday at around 5 PM. After 🤮 for two days straight and not sleeping I knew it was time to go to the hospital and get some real help. Help to stop vomiting and some mental health care help. So I made the call to 911 and went on my way to Antelope Valley Hospital.

Now here’s where the story gets, well I hate using the word but, crazy.  I arrived at the hospital anywhere between 5 – 7 PM. Time was not something I was paying attention to. The ambulance was AMR. I’m mentioning this because that’s when more despair hit as I realized I will have to fight tooth and nail with my insurance company for this trip. They do not offer ambulance service. The reason is because the companies won’t take the insurance because Independence Blue Cross does not pay, go figure. Now I’m at the hospital and a quick little story… I am on a bed in the hallway. There is a nurse using a rolling computer with no gloves, no mask, touching her face leaning on her hands etc. I was waiting for Ashton Kutcher to pop out and tell me that I just got punked!  Everyone and their mother, including myself, were wearing masks. I guess she thought she was special. 🤦🏻‍♀️

I finally get brought into the little intake room. The doctor came in and he was very pleasant. The nurse came in and she accessed my port and got anti-nausea medication started. I had a lovely little roommate at first. A 93-year-old mom of 5. She was just the sweetest little thing. She made the first part of my stay bearable. She was telling me her stories as I was vomiting into my bag. And as weird as that sounds, it was comforting and I wasn’t as scared. Finally the medication took affect. My little friend was being taken up to her room. Before she left she told me how she was 93 and she’s never been sick in her life, so why now. I explained that she’s level 93 and she’s just in for a reboot for her next 93 years. She seemed to enjoy that.

The next person brought into this tiny little room with me was an older gentleman. At that time my anxiety started. By this point I was no longer vomiting but I was having an anxiety attack. I was offered Ativan which gave me my only real relief of the evening. I was told I would be taken to an area to be observed. Basically this area was the hospital’s mental ward. Then I arrived at the green mile, my name for the green section of the hospital. I saw no psych doctor. I did speak with a psych nurse. Of course they asked me why I was there and then asked if I felt suicidal at that moment. I explained I feel suicidal pretty much every moment because of my situation, but at that exact moment in time, no. Then they asked if I felt suicidal at that moment in time how would I do it. I basically said, umm I am in the hospital now so I’ll probably grab a syringe and poke my eye out. I don’t know. 

During this time other patients are coming in. Homeless patients saying they were suicidal and/or could possibly hurt someone. I know they were homeless because people were “talking”. One person was discharged and was very upset because I guess he had nowhere to go. He then showed back up because he went and got readmitted. Seriously. Pretty smart as he/they really know how to work the system. It was just a very surreal eye-opening experience for me. As for me, at 3:51 AM I was told I was being sent home because there was no real risk with me. I can’t even begin to tell you the look on my face but I’m sure you probably know. 😳

You see I’m not on Medi-Cal through my disability. I use Independence Blue Cross through my husband’s work. They don’t pay so hospitals don’t want me. Read that again, because that’s exactly it. Now if I had been a wealthy person with a good insurance, I would’ve been put on hold. If I’d had been homeless person or someone at poverty level on government insurance I would’ve been put on hold. But I’m a nobody with crappy private insurance so I was kicked to the curb. At 5:42 AM the ambulance arrived to take me back home. They were trying to figure out who is going to pay for it. I explained to just get the ambulance that I would have to deal with my insurance company after the fact. You see there’s no way for people like me to get transport to and from hospitals with Independence Blue Cross. and, they are “out of state” so it’s at an out of network rate. So I have to appeal every single time for an in network rate. This is NOT what should be happening in the United States of America with private insurance or any insurance! 

So now, I am home. The only thing that was accomplished was I found out I have an awful bladder infection. I already knew that, bladder stones. Duh!! They gave me no mental health care help. I had to ask for mental health care resources. I got two pieces of paper with some phone numbers.  I tried to kill myself and that was the help I got. Going through the two days of hell vomiting continuously woke me up. Does that mean I will never try to hurt myself again? I don’t know. But now it’s no longer a secret. Now it’s no longer the elephant in the room. Now I can call out for help because those that love me know what I’m going through. 

I have a video call with my neurologist on Tuesday. I will be making video call appointments with my other doctors today for next week. I’m not going to be complacent anymore and allow this kind of treatment. I’m going to fight for my life and my health and my family. I’m afraid every day. I have feelings of ending my life every day. But now, after this time, I believe I will choose life every time. Can I say that with 100% certainty? No, of course not. But I will do my best to always choose life.

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…

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

Hope can be paralyzing…

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.

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

Am I alive or do I just exist?!

Remember these from July 2019. My wonderful bladder stones thanks to my wonderful urostomy. So I was supposed to get this taken care of back in August 2019. Didn’t happen because that’s when I had to go to the hospital because I thought I broke in my hips and my back when I was trying to get in to rehab. Thanks to Independence Blue Cross not allowing me rehab I was unable to get out of my bed so we kept rescheduling. Now with the virus I was rescheduled twice, and today they called to tell me it had to be pushed back to May 26. But it’s really only a tentative date because it may change again. So basically I’m filling up with so much bacteria and that’s probably why I feel a little clammy and not well at times. I try to do everything right but nothing ever goes right. Possibly because I am left-handed. 😂😂 I’m joking… Or am I. 🤔

I am trying to find the humor in all of this because that’s the only way I survive. But man, it’s getting harder and harder to laugh. I know I know, I should be glad because I’m alive. Am I alive or do I just exist. You’ll be the judge. 🤷🏻‍♀️😕

Twins

There’s an alien in my bladder

I’m wondering how many more are in there now. 😳

Have courage and be kind.

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

Straightening my crown yet again…

So we’re going to try getting me up in my shower chair. I figure since Independence Blue Cross isn’t going to help me in any way, I’m going to have to do it my damn self. Since the husband has to stay at home right now, I guess it’s the best time to start trying. I won’t lie, I am really scared because I know it’s gonna hurt like a motherfucker. So I’m going to “medicate” 🌿and try to psych myself up for this. It just really sucks that I have to psych myself up to take a shower. I know that some of you reading this completely understand, and I’m so sorry.

img_9844
I hope that all the movement I’ve been doing on my own will help. I just have to remind myself not to get discouraged if it doesn’t work today. If I keep trying maybe at some point it will work. The worst part about that comment is I’ve been trying on my own for quite some time now and it hasn’t worked. But, maybe, one of these times it will. Oh my gosh I am really nervous about this.

Also, real quick, thank you to all that have stuck by me and supported me even when I go a little mad. 😉 Seriously, thank you 🙏🏻🖤

Have 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. 😢