Anger · Fear · FUCK · HELL · Medical · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Sadness · Strength

First do no harm…

I think doctors forget, or simply don’t care how they speak to their patients, and how those words can affect them. Tonight in a very blasé tone while shuffling papers and speaking with the nurse that was in the room via FaceTime, Dr. Kareti from AV neuroscience, told me I am end stage MS and there’s nothing more they can do for me. The humorous part is the that their doctors office is why I’m trapped in bed from pain from hip contractures. No one found the break at L1 when I fell October 2013 which landed me in the bed. No one got me the little kickstand boots to keep my legs in proper position.  I mean if I had known then what I know now I could’ve done all this stuff on my own. Unfortunately I’m not a doctor and that’s why I was going to doctors because I thought they would know what to do. And now, there’s nothing more they can do for me. Oh wait, I forgot, they can contact hospice for me… 

Oh oh oh… I tried telling him about the Physical Therapy fuck up and the visits or lack there of, and he just blew it off. I mean he was really busy looking at papers on his desk and handing things to the nurse. I must’ve interrupted him with my FaceTime appointment.

So to sum it the fuck up, basically because I have severe pain and am unable to get out of my bed, I should just throw in the towel.

Game on bitch!

Have courage and be kind

… I just read this again and I should probably just burn it down because the pain is terrible and the pain is just so intense right now I shouldn’t be blogging about anything. But I’m gonna leave it I just felt the need to say sorry. I’m a little lost and so angry. I seriously can never catch a break.

And like I always say;



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…

Family · Loss · Love · Multiple Sclerosis · Primary Progressive MS · Ramblings · Sadness · Strength

In Memory – Will Herberts

Will was one of those people that you just wanted to have as your friend. No matter how awful his multiple sclerosis was treating him, he smiled. He always had a smile for everyone and a motivational word or two. His passing left so many of us in tears. We were just becoming good friends when he went on his next adventure. When people say multiple sclerosis doesn’t kill you, they are wrong. If he did not suffer from MS he would not gotten the infection that landed him in a nursing home.  He would not have become septic, and he sure as hell wouldn’t have ended up with bedsores. He did die directly from his multiple sclerosis.  I think the part that is hard for many of us is that while in the nursing home he suffered from bedsores. That is something that should not happen when you’re under 24/7 care. 😢

The best thing about him is he always smile no matter how bad he was feeling. He always had a kind word for everyone that he met. he definitely was “Wicked Smaht”!! The world lost an amazing person the day he died. What I loved about him the most is that he never had an unkind word to say about anyone. He was just always there when you needed him. Thank you so much Will for being you. You touched so many lives and we miss you so! You truly were an MS Warrior! I know wherever you are you’re making everyone laugh and feel better. Love you! 😘

Just look at his smile! That is who he was!

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.

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. 😢

Family · Quotes · Sadness · Strength

In Memory

My brother-in-law passed away suddenly. He leaves behind his beautiful wife and his little girl. I can not imagine the pain my baby sister is feeling. If you pray, pray for those he leaves behind. Send thoughts and blessings for strength. He was a big kid, he was funny, and he loved my sister and their beautiful daughter with everything he had.  The world is a little bit darker without him in it.

Hold those you love close as we just never know…

Have courage and be kind 

Donald Keith Aymar 6/7/72 – 2/15/20 ♥️

Anger · FUCK · Health · HELL · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness

Weird Wednesday

I was cruising the Internet and this picture popped up. It’s not meant to be sad it’s not meant to scare anyone. But I’m not going to spend another six years and three months in my bed. Without help, proper help, I’m never going to get out of this prison have a bed. My ankles suffer from dropfoot and contractures. My knees haven’t been able to straighten in about three years. And my hips I can’t even get in my Hoyer lift because of the pain. This has been going on for a very long time now and nothing has changed. I really thought my time in rehab in 2018 was going to save me. I fought so hard I did so well, then nothing. How do people that are bedridden see their doctors? I know they can call non-emergent transport, then try to coordinate that with their doctors appointments but first they have to make the calls to make sure it will be approved. Really? Making something hard even harder.

I wish I could be the shiny happy person that people want me to be. But that’s not gonna happen. I’m angry. I’m pissed off. I get it life‘s not fair blah blah blah. You know the people that say that to me… People with no chronic illness. I guarantee they wouldn’t last one day trapped in their bed not able to even get up to go to the bathroom, be able to roll over in their bed, or sit up without help. They would break the first 20 minutes.

Tears! 😂😂😂 No, if you could read my mind you would be screaming at the top of your lungs for help. I am so angry and I know that anger doesn’t help. But when every year it just gets worse, sorry I can’t put on that smile every fucking day for you. I’m angry about people who I see complaining all the time about the tiniest little things. Yes I’m an asshole. I can’t sugarcoat shit every fucking day. I really just want it all to end. I really really want freedom. I’m so tired of being in prison for a crime I never committed.

Have courage and be kind

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

Sunday Feelings

When I first saw this picture sometime ago my eyes filled up with tears. I came across it again this morning. It had a different quote on it for multiple sclerosis but it was very grainy and looked terrible. 🤷🏻‍♀️ I did a Google search and the image popped up with the other quote and a blank picture. I felt the need to add my own quote to this powerful powerful image.This picture sums up my life completely. we need a cure! I just hope one is found in my lifetime before it is too late for me.

Have courage and be kind

*** if anyone knows the creator of this amazing picture, please let me know. I’d like to give credit where credit is due.