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 · Ramblings

The Coronavirus and You!

From a Very Wise Friend

Let’s say you wake up with a terrible cough, fever and body ache. You immediately go to the doctor and unfortunately you are diagnosed with covid-19. In the last two weeks you were not aware that you were infected, and you ignored “the rules”.

You hung out with some friends to eat a pizza, you invited people home and you even went to a park and a beach. You thought “I don’t feel sick. I have the right to continue living a normal life. No one can tell me what to do. ”

With the diagnosis of Covid-19 you spend the next few days on the sofa in your house quite badly, but soon you feel better, because you are young, you are healthy and you are strong. How lucky you are!

But you infected your best friend during that visit to your house, and since she didn’t know she was infected, she visited her 82-year-old grandfather, who uses oxygen to help him breathe because he has COPD and heart problems. Now he is dead.

Your co-worker, who has asthma, also caught the virus from you. Now he is in the ICU and he also infected his family members, who will not know it for two weeks yet. The boy who charged you for the pizza at the restaurant took the virus home, his wife has multiple sclerosis and this makes her immunosuppressed, she is not as lucky as you, so they take her to the hospital because she cannot breathe. They may need to induce a coma and intubate her. You may not be able to say goodbye to your loved ones. She may die surrounded by machines, without her relatives around her.

And all this because you were uncomfortable wearing your face mask or you did not like to stay at home or change your routines for a little bit over all other rights, and you wanted to continue living your life normally; You also believe that no one, no one, has the right to tell you what to do. But:

#socialdistance – NOT for you!

#usacovers – NOT for you!

#stayathome – NOT for you!

IT’S FOR EVERYONE! Responsibility and empathy is called. IF YOU TAKE CARE OF YOURSELF, 😷 you take care of the ones you love the most. Think about it! 🤔

Copy and paste it! That’s how I did it.

Have courage and be kind.

Ramblings

Quantity of life VS. Quality of life.

I will preface this blog by saying, at this moment I’m not depressed for my own reasons and I’m not suicidal. But I struggle with this all the time. I have no real quality of life at this point.

I’m not sure how I’ve kept myself from going crazy. I know that being a 100% trapped in a bed is foreign to most people. We have been trying since quarantine to keep moving my legs. At this time, nothing has changed. I am still unable to get into my chair or even into my Hoyer lift. There’s no way I can properly explain the pain from having contractures throughout your legs. The moment I sit up in my bed (adjustable bed), which I do every day as high as I can go, my ankles and my feet swell so badly. Even with compression socks and braces on my ankles. I am discouraged. We have been trying. No, I’m not giving up, but I am telling my truth. I am a realist and I’m not someone that sugarcoats anything.

I am so tired. By the end of the day my legs are so numb and tingly that I really feel like I’m going mad. Pain in my hips is excruciating from all the movement we have been doing for my legs. I’m struggling because quite frankly, it’s not helping. I need that hard-core 3 to 4 hours of straight up physical therapy at a rehab facility. And that is not going to happen. Insurance companies, namely Independence Blue Cross, and their rent-a-doctors are allowed to run our healthcare now. Again, I’m not being pessimistic I’m being realistic. Some people can’t distinguish between those two things. I am still waiting to get my money back for the transport to my doctors. And for some reason Jason is not returning my emails. Imagine that!

Again, I’m not giving up but I’m so tired deep into my soul. Every morning when my alarm goes off for my medications, I wish I could just continue to sleep. Nothing new happens in my life and it hasn’t for years. I’m tired. And it’s not the tired that normies feel. It’s the tired of chronic illness where every ounce of your strength is being sucked out of you and thrown to the wolves. I would love for there to be a, bedridden challenge. Where for one week, hell one day, people cannot get out of their bed for any reason. Not to go to the bathroom, not to brush your teeth, or to wash your face, not for food or anything you do on a daily basis. Where you have to have someone do everything for you and bring everything to you. I guarantee the majority of people won’t even make it through half of a day.

I am broken. I am damaged. Yet I’m still hanging on. I feel defeated, but I’m still fighting.

Something weighing very heavily on my heart is that my favorite Disney princess, my MS twin, my music guru, is fighting for her life right now. She truly is the only person that understands what I go through on a daily basis. My heart is breaking because I know she is so scared right now. She truly is the ultimate fighter. She is the epitome of strength, my hero. I know in my heart that she will beat this as well. I just hope the cost of all the tragedies she has had to endure in the last year and a half does not break her spirit. Although looking back at everything she’s had to go through, her spirit is strong! If you pray, if you send out blessings, thoughts, whatever it is that you do, please send them to her. Just call her, Beautiful Disney Princess. If you happen to read this my twin, just know that I love you so much and if you need me you know how to find me. I’m sending all of my energy your way and to your beautiful family. You see chronic illness doesn’t just affect the person with it, it grabs and holds onto the whole family.

I know this kind of went all over the place today. That’s where my mind is right now. And for those people that are saying, everyone’s depressed right now with the quarantine and being trapped in their homes etc. Sorry, but no! My life is quarantine. Many of you are heading out and doing whatever you want because you think it’s safe. Quite frankly, it’s not and you’re an idiot if you think it is. The numbers are now going back up thanks to memorial day weekend. And I truly believe because of this, my beautiful Disney princess is fighting the coronavirus. Let that sink in. You may not hurt yourself, or your family, but you are in a roundabout way, hurting others! I hate to sound so harsh, but I kind of hope someone you love gets sick so that you wake the fuck up and realize anyone can get this. Oh man… Before I get angry I’ll stop right here.

Have courage and be kind!

PS. Stay the fuck inside, if you go outside wear a mask, social distance, it’s not over yet!



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.