Tag: courage

Health · PAIN · Primary Progressive MS · Quotes · Ramblings · Strength

Oh the pain… the pain!

Tracy8 Comments

I had my FaceTime neurologist appointment and PT yesterday. Both went well. But… I am paying for the PT today. 😳

I so hope this is true for me. We actually got my right leg into a 90° angle. That was crazy. My left side, not so much. Today Roger (hubby) rolled blankets to keep my knees and legs a little more normal. It hurts quite a bit, but no pain no gain! Thank the universe for cannabis. 😏

Stretching everything is going to be a painful process, but the outcome will be phenomenal! Now here is the shitty part… No more visits per Independence Blue Cross. 🙄 I have to call Monday and get the pain management doctor to call in more visits. WTF!!! My concern is all the work we have accomplished last week will fade away waiting for Insurance to allow me more visits. I really don’t understand how they have the right to run my healthcare. It’s mind boggling. The worst part is that it will start all over. What that means is, I will have to have an admission visit again, then an evaluation visit again, and then the PT visits start. What a fucking racket. All the while people like me are screwed. I just keep telling myself to keep breathing. This will work out, we will find a way. Sadly this just proves to me why people do give up. We have to jump through so many hoops, it weakens our soul.

^^^ I say this, I just wish I could truly believe it.

Have courage and be kind. 

Happiness · Health · Medical · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

The light at the end of the tunnel perhaps…

Tracy6 Comments

I had my first in-home physical therapy appointment today. I’m almost afraid to be as happy as I am about it. Muscles were moved today that haven’t been moved for 6+ years. My right leg knee hip ankle, yeah the whole thing 😜 after a few minutes, didn’t hurt as badly. The left leg, on the pain scale a 10. He was almost afraid that my hip was out of the socket. Thankfully it’s not. I realized how the body protects itself today when at a certain point my leg went tight. It basically said, no more! Some of the problem is the knee. I have a frontal torn meniscus and wow!  It’s something that was never taken care of because it was the second time it happened. That’s a whole other story. A good thing is he is going to let them know what I need for my legs. Starting with a knee brace for my left knee. He was so helpful and even did the breathing with me. I have a pretty high pain tolerance, but a couple times I thought my leg was going to snap.

He will be coming back Friday. The problem I may run into is, of course, Independence Blue Cross. At this point I have four visits. Technically the first nurse visit to fill out the paperwork, and the PT visit just to assess my situation, along with the last visit when they sign you out of rehab whatever, and the visit today, that’s already four visits. 😳 Now that he knows the range of motion and what it’s going to take to help me, I should get more visits. I think I’m going to have to send an email to Jason at Independence Blue Cross. * I know there are many run-on sentences. I’m a little medicated as the pain right now is pretty high. Kind of like me. 😏

After PT I actually felt positive. That is kind of a strange feeling for me. I am going to go with it and see where it takes me. I just hope that Independence Blue Cross will allow me enough visits. I am definitely going to need a month or two since it’s only a couple times a week. If we can get everything stretched out then I’ll be able to get back in my wheelchair. Right now, that’s really all I’m pushing for. Once that happens, I can possibly get Physical Therapy to help me be able to transfer on my own. It could happen…

Have courage and be kind.

mental health · PAIN · Primary Progressive MS · Ramblings

Letting go…

Tracy4 Comments

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!

Tracy6 Comments

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.

Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

We have to keep going!

Tracy5 Comments

We must keep going… I know that know. Although, it can be so hard to do. The home health nurse came over last week and now I’m waiting for the physical therapist to call for an appointment. We are not sure how many appointments I’m allowed through Independence Blue Cross. Sadly, it probably won’t be enough. Again, I’ve been in this bed for over six years. The damage done is much more intense than a few at home PT appointments. All about the money and giving their higher-ups bonuses at the end of the year. Meanwhile, I’m trapped in my bed thanks to, in part, Independence Blue Cross. they kicked me out of inpatient acute physical therapy in 2018 too soon, and now they won’t give me any proper care. According to Independence Blue Cross doctors, it’s not needed. My family does as much as they can, but without real help… I really feel like I’m going to be stuck in this bed for a long time. Unfortunately in the world we live in today, insurance companies run our healthcare. Profits over people. I’m still waiting for them to give me my money back for the transport services. With everything going on the world right now, we could really use that 900+ dollars back. Greed prevails… 😳

I’m trying really hard to keep going. I believe I will, but I just need help. My counseling appointment went really well last Thursday, and I will be talking to him again this Thursday. So that’s a plus.

I’m still feeling quite a bit lost but this time I am reaching out. It’s gonna be a long process but I have to keep going. 

Have courage and be kind.

Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Strength

We all need a little help sometimes.

Tracy4 Comments

Tomorrow at 9 AM I have my first Zoom counseling appointment. I was getting concerned because ComPsych kept calling and telling me they hadn’t been able to find someone. This morning that changed. I’m a little nervous but I think it’s going to be a very good thing for me. We need to let people know that getting help is nothing to be ashamed of.

It truly is OK to ask for help! And please, if you or someone you know is in crisis, call the National Suicide Prevention Lifeline.

Have courage and be kind! 



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

In Memory – Will Herberts

Tracy6 Comments

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!

Tracy6 Comments

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.