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.￼￼￼￼
Today’s fun is trying to get my ankles used to wearing my Forrest Gump shoes again. 😂 It’s been a while and I think my legs are going to be pissed off at me tonight. 🤷🏻♀️
Tomorrow we will be trying to get me in the chair again. My lower back is still hurting really bad so we didn’t want to push it today.￼
And now I’ve had these on now for 2 1/2 hours and I think that’s long enough for today. ￼￼￼
Baby steps… 🖤￼
Have courage and be kind.￼
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.￼￼
I am ready for my appointment Mr. DeMille… I mean Dr. Nasser!￼ 😂 I feel really good right now. My neurologist did have to cancel our FaceTime appointment today due to their computers are down. Hopefully I will get another one this week once their computers come back up. At 1 PM I have my pain management doctor appointment. And now that I know this can be done via telephone, Independence Blue Cross will be paying for me to see my doctors this way. At least until I get out of my bed! 😏￼￼ YES, they will! ￼￼And yes, here’s another picture of me! LOL Feeling good today! ￼
Have courage and be kind!￼
I’m dying inside
Have courage and be kind.￼
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.￼￼￼
So we’re going to try getting me up in my shower chair. I figure since Independence Blue Cross isn’t going to help me in any way, I’m going to have to do it my damn self. Since the husband has to stay at home right now, I guess it’s the best time to start trying. I won’t lie, I am really scared because I know it’s gonna hurt like a motherfucker. So I’m going to “medicate”￼ 🌿and try to psych myself up for this. It just really sucks that I have to psych myself up to take a shower. I know that some of you reading this completely understand, and I’m so sorry￼.￼￼￼
I hope that all the movement I’ve been doing on my own will help. I just have to remind myself not to get discouraged if it doesn’t work today. If I keep trying maybe at some point it will work. The worst part about that comment is I’ve been trying on my own for quite some time now ￼and it hasn’t worked. But, maybe, one of these times it will. ￼Oh my gosh I am really nervous about this.
Also, real quick, thank you to all that have stuck by me and supported me even when I go a little mad￼. 😉 ￼Seriously, thank you 🙏🏻🖤￼
Have courage and be kind.￼
If any doctor tells you that multiple sclerosis does not cause pain, junk punch them to show them that it does. That doctor should not be practicing medicine if in fact he/she believes no pain is involved with MS. Most likely they got their degree at Acme school of medicine. Sorry but they are incompetent and ignorant and you should find another doctor if that happens to you. But please don’t forget to junk punch that idiot.
Have courage and be kind. Although in this case you don’t have to be kind. 😏￼￼￼￼
I’m telling you today is already on my nerves. I got my bladder surgery scheduled and the pre-surgery doctors appointment. I did what I was told and called to get the pre-certification for the non-emergent transport, ￼￼and was told my doctor needs to call. Now a week and a half ago the Young lady at Accolade called with me on the phone and took care of this for me. ￼I think something must have happened because today no one will help me do it. Then, this weekend I received a new bill from my August 2019 stay and while getting my papers all together I found one I’d forgotten about￼. Previously I￼ was told that my responsibility would be $50.90, but￼ these bills together are￼ $3000 and some change.￼￼￼ I think someone’s messing with me. Am I on candid camera? Or maybe the TV show Punked came back. I know the wizard is behind the curtain. 😂
Trust me this morning I haven’t been strong. I’ve been crying a lot because it’s so overwhelming right now. This company (Independence Blue Cross) and their people are keeping proper care from me and making everything I need that much harder.￼￼ it’s been a big eye-opening experience for me. I used to think people were exaggerating when they said their health insurance wasn’t helping them etc. I mean how can your health insurance not help you when you pay for that service?! Right? It has been boldly thrown into my face that it’s all about the money and the greed of these corporations. They have the money to put me in a top-of-the-line acute neurological rehab, but they’re not going to do it because that would take away from their paychecks. I am tired, I am discouraged, I am broken, but I will not be defeated! If they’re doing this to me how many other people have they done this to? And how many of those people did not have the strength or even know what to do to get help. This is what these companies do. They prey on people like me and their rent-a-docs run our healthcare without even seeing us or meeting us.￼￼￼￼￼ ￼
So, while I have had a mental breakdown this morning and am feeling myself falling into the depths of healthcare insurance hell,￼ ￼I will not stop!￼￼ this is my life! And I really hate when my mind goes to that dark place and I pray for karma to hit each and every one of the people that are denying me the life-saving care. I don’t like being that person. I don’t want anyone to feel the depths of despair that I feel every morning I wake up and realize it’s another day trapped in this hell. I wish these people would come to my fucking home. All they would ￼have to do is take one look at my legs and they would see how much I need their help.￼￼ Oh shit, wait a minute… They DON’T FUCKING CARE!￼ Phew… that was a close one, I almost gave them credit for being human.
I am adjusting my sails right now￼!! 🖤
Have courage and be kind.￼
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. 😢￼￼