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

The human body truly is an amazing thing.

While I await more rehab through my insurance, I am having a private Physical Therapy. It really sucks when you have to pay for some thing out of your pocket to keep it going when you pay thousands to have healthcare insurance. I’m hoping this will be taken care of within the next couple weeks and my insurance will pick it back up. I knew I could not stop for the little bits that I’ve gained would be lost. I’m very thankful to my stepmom or as I call her, mom, for taking care of private sessions for me.

I really believe that I will be able to get back into my Hoyer lift and into my chair within the month of July. I’m realizing there are some medical issues I will have to get taken care of as well. Both of my knees have frontal torn meniscus’s. This causes some serious pain when bending my knees. But we are taking it slowly and the pain is lessening. I should’ve had these problems fixed years ago, but they would not fix the issue that caused the problems. My doctor told me insurance would not cover it because of my illness and the fact that I spent a lot of time in a wheelchair. So basically every couple years I would just have to get these surgeries to put a Band-Aid on the issue. I had already had one surgery to fix the issue and now I was going to need another one… That’s another story for another blog.

My body lets my physical therapist know when it’s had enough. My leg will literally stop any movement. If that makes any sense at all. It truly is amazing how the human body works to protects itself. I am learning the saying, move it or lose it, is so very true. I’m doing everything I can on my own to move my legs as much as I can, and my husband is also trying to help as much as possible. He has his own back issues and it causes him a lot of pain helping me. So it’s a lot of moaning and groaning going on as he moves me around. Old people problems. 😜

Patience is something that I have to work on. It really isn’t one of my virtues. I am learning and I know that it took 6 1/2 years to get to this place so it’s not going to be fixed overnight. This time I will not give up. This time I will not give in. This time I will fight for my life!

Have courage and be kind. 

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

Oh the pain… the pain!

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…

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.

Health · PAIN · Ramblings

Baby steps

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.

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.

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

We have to keep going!

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.