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.

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.

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

ComPsych – Making the Call

I may have found someone to talk to. I’m awaiting a phone call. Now my husband’s company, Comcast, wants us to go through ComPsych for our mental health needs. Anything has to be better than going through independence Blue Cross directly. I don’t mean to be so blunt, but IBX really is waiting for me to die. 😳 I know, drama queen right?! What other reason could there be for them fighting life-saving rehab for me. Oh wait a minute, money! It’s just very sad to me that money is more important than human life. Again, and I know I’ve said it before, if they had allowed me another month in rehab, I wouldn’t be needing rehab anymore. unfortunately, giving people bonuses at the end of the year was more important than my life.

Enough of them, things will be coming into place soon. 😏 Now, I am going to get some help. I was very proud of myself for actually making the call today. I’ve been looking at the paper they gave me at the hospital for mental health help. It was a complete and utter joke. Bottom line is my insurance won’t cover anything they gave me. I actually think this ComPsych, which is through insurance I think in a roundabout way, is going to be a good thing for me. Honestly it’s a good thing for anybody to have someone to talk to that’s completely impartial. I really hope this will be another positive and a new turning point for me.

Have courage and be kind.

Happiness · Hope · Love · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

She sleeps…

Just like, he sleeps, in Pretty Woman.

I have suffered from every type of insomnia at some point. I don’t think I have slept more than three hours in over 23 years. Since my “situation” this past week I’ve been on a high. I knew that was gonna happen and thankfully I’m recognizing it very quickly. Last night my husband and I watched, The Wrong Missy, on Netflix. It was awesome. At around 11:30 PM I tried to go to sleep and nothing happened. Then it was 1 AM and I started going on a low feeling like, oh my gosh is anything going to change. The next thing I know it is 9:50 AM. I can’t believe I got over eight hours of sleep. I feel amazing and I’m very afraid of that. I haven’t been happy in so many years that this feeling is very scary. This time, thankfully, if I do hit that low I will reach out to my amazing tribe. I am finally seeing that I’m not alone. 🖤 I wish I had noticed that before.

I love Snapchat filters. I rarely post my photo on my blog so here I am. 😜

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.