Loss · Quotes · Ramblings · Sadness

I have got to get my head right!

Like I said in my previous post, I’m numb. I was just watching a movie, and could not stop crying. Not so much because of the movie, but because of the characters. You know, being able to walk and all. I know, petty right? I just want to be able to get up and do my make up and go to a restaurant and sit in a booth. (OK I wouldn’t do it right now, you know corona and all) I just want to feel my feet on the ground again. For 2,461 days (give or take doctors appointments etc.) I have been in this bed. I know I should accept it and like a couple people have said, get over it, but that’s not an easy thing to do. I just feel like everything is crashing down on me. I don’t feel strong. I feel like I just want to fall in a hole and hide away.  I seriously cannot stop crying. And it’s not just a couple little tears, it’s ugly crying.

I know, I know that I will survive this. But seriously, sometimes I wonder what’s to survive?! I know logically that it’s taken me 2,461 days to get here, so good things won’t happen overnight. All I need to do is to be able to get into my wheelchair. You would think that would be easy right? It’s not. The pain in my hips I believe is getting better with each PT appointment, but the range of things I need to do I can’t do at my house. So then my mind goes back to Independence Blue Cross denying me rehab in the facility. I know I should let it go and get over that, but I’m fucking angry. I am so fucking angry. I’m never comfortable anymore. I can never find any relief. Before anyone asks, I am not suicidal. I’m angry! I’m angry at my doctors who dropped the ball 2,461 days ago! I’m angry at an insurance company who values money over human life! I’m fucking angry at rich people who have the money to afford the kind of help I need! I know it’s not their fault they’re rich. 😜 I don’t even know where I’m going with this blog but I just knew that I needed to get it out. 

Then I read all of these wonderful motivating quotes people do, so, when does it get better? I am moving forward. I am doing all the things I’ve been told I should do. I am trying to learn patience. I am trying to hold it all together. I am just really tired of only existing and not living. I miss being able to wear regular shoes. I miss being able to wear jeans. Oh you have no idea just how badly I miss being able to wear jeans! And oh my God, boots! I miss boots! I miss taking two stairs at a time. I miss being able to see over everyone in the crowd. (6′ tall here) I miss being able to just put on a bathing suit and get into a pool. I really miss going to the beach.  The one thing I miss more than anything, is to be able to go places with my kids, my family! I miss me.

I can’t take off my warrior mask. I cannot fall apart. I would love to be able to let go of the weight that I’m carrying. You have no idea. As I’m reading what I have written, WOW, do I sound like a little crybaby bitch. I am one of those people that hate people that cry and complain all the time over trivial shit, ie. the common cold and such. I really hope they never get something substantial because they won’t be able to handle it. But alas, then I feel bad for feeling that way because it truly is all relative to the person going through it. So then I feel like a real bitch. Then I get angry at myself for being a bitch, and the self deprecation cycle goes round and round. I just want to know why it has to be so hard.

If you’ve made it through my crybaby blog, thank you. I am trying to hold it together. I am just glad that it’s almost time for bed because I’m truly done with this day.

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.

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.

Quotes · Ramblings · Sadness

The greatest loss of life

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 · 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.

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.