Quotes · Ramblings

It’s not your fault…

It’s not… It’s not… It’s NOT your fault! 🖤

Have courage and be kind.



Health · mental health · Multiple Sclerosis · Primary Progressive MS

You have multiple sclerosis…

Twenty-three years ago today, I was told, you have multiple sclerosis. I’d been searching since 1986 because I knew something was wrong. I was diagnosed with chronic fatigue syndrome and EPV. I was also diagnosed with clinical depression and anxiety. Go me! Back in 1986 MRIs were not a test doctors really ever did unless there was an accident of some sort. And no one would’ve thought multiple sclerosis when they looked at me. 👀

What my doctor saw was a healthy young woman who was working full-time and going to college at night. Chronic fatigue and the Epstein-Barr virus were easy to diagnose. Even getting these diagnoses I kept searching for answers because I knew something else was wrong.

Then, in 1997, a PA asked me to walk about 10 feet for him. I did and he immediately ordered an MRI. A physicians assistant diagnosed me. He said all he had to do was see how I walked and he thought it was either lupus or MS. The drunk walk. LOL my MRI showed many lesions of MS. My lumbar puncture was clear so I figured someone was wrong. I went on to get two second opinions and was informed that yes I have MS and I am primary progressive. I was so hoping they were wrong. They could’ve diagnosed me with the MRI and saved me from that awful lumbar puncture. 😂

I wish I could say I’ve come to terms with The MonSter that is MS, but I haven’t. Life as I know it was taken away from me and my family. MS is a wicked beast and there is no cure at this time! When people say, it’s just MS, I want to junk punch them. 😜

It’s not, just MS! It’s a debilitating, paralyzing, awful disease. We need more awareness and we need a cure… hopefully in my lifetime. 🖤

#MSWarrior #NeverGiveUp #KeepFighting #WeNeedACure

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.

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…

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.

Family · Health · Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

I am so proud of you!

It’s been two weeks and one day since my suicide attempt. I’m still on that high but I have had a couple of lows. My husband helped talk me through them and I’m utilizing my tribe. I have the suicide hotline phone number ready to go on my phone, and Alexa will call them for me as well. People think it’s easy to just, get over things. For some it is, but for some of us it’s not. All we can do is live day by day. I am actually living minute by minute right now. I have been known to self deprecate and that is something I’m trying to stop. I am an awesome person, a great mom and wife, and a fierce friend. I am very proud of myself right now for holding it together when I’m ready to fall apart. I am really hoping for better days. I am hoping to get out of this bed at some point. I just have to let go of my past and who I was and learn to love the person I’m becoming. It’s a process and a pretty hard road, but I’m going to keep going forward.



Have courage and be kind.

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

FaceTime visit with my doctor!

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.