Craziness · Darkness · Fear · Health · Hope · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · RANDOM · sadness · Strength

Tuesday Feelings

I honestly don’t know if I want to be found. Most days I don’t think I’m worthy enough of being found. Feeling lost is a horrible feeling.

 Have courage and be kind

Fear · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · sadness · Strength

Sunday Feelings

When I first saw this picture sometime ago my eyes filled up with tears. I came across it again this morning. It had a different quote on it for multiple sclerosis but it was very grainy and looked terrible. 🤷🏻‍♀️ I did a Google search and the image popped up with the other quote and a blank picture. I felt the need to add my own quote to this powerful powerful image.This picture sums up my life completely. we need a cure! I just hope one is found in my lifetime before it is too late for me.

Have courage and be kind

*** if anyone knows the creator of this amazing picture, please let me know. I’d like to give credit where credit is due.

Anger · Darkness · Fear · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · sadness · Sleep · Strength

Depression and Fear are Paralyzing

The past few days have been hard. The stress from the denials and all of the subsequent appeals and the denial for the ER and then the reprocessing of that claim… It has been hell. My last MRI showed that my PPMS was not active. That MRI was about or year to a year and a half ago. I don’t even remember because my mind right now is scrambled. Yes, I could look it up, but quite frankly I’m not going to because I’m fucking tired. I get it, I’m in bed 24/7 so how can I be tired, right? My body doesn’t even understand awake and rest anymore. It’s not sure if it’s supposed to be up or down. I’m never comfortable anymore. There’s always pain. I’m not a neurologist and I haven’t had a recent MRI, but I know that my PPMS is active again. I believe it’s been happening over the past couple weeks or so. I have no energy at all. It’s hard to lift my head at times. I am so scared that I’m not sure what to do anymore. So I find these motivational quotes on an app that I thought might help me.I have courage, I haven’t given up on myself, so when am I going to be cut a break. These motivational quotes don’t work for everyone. I know, I know, if I look really hard it can work for me. 🤦🏻‍♀️ Sorry if I’m not miss optimistic right now. Most likely it is BECAUSE of my recent conversation with Independence Blue Cross. 

It seems that I am also going to have to fight, a.k.a. jump through hoops to be able to get to my doctors appointments. I haven’t been able to get out of my bed for so long (OK we did finally get me up for a shower last Saturday. But, it’s NOT gonna happen again because I can’t go through that pain again) I haven’t been to my doctors since before August 18, 2019. (my wonderful ER visit) So the gentleman from Independence Blue Cross found me a couple of non-emergent transports that they will cover in network that can possibly take me to my appointments. All I have to do is call these places to see which one will do it, ie; take me pick me up blah blah blah. Then I need to find out when they’re available, an appointment for my doctor, not in that order, and then… Look on the back of my insurance card call the number to make sure I can get pre-certified for this non-emergent transport. Are you fucking kidding me! I guess this happens to a lot of people if they actually made a meme for it. He also gave me the names of in-home physical therapy companies that I can call and see if they might be able to help me. Once I find a company that I feel comfortable with, I need to get to my doctor to have my doctor send in the paperwork to hopefully get in-home PT. 😳 I don’t think that the people realize at Independence Blue Cross the amount of pain it causes me to have my legs moved in to their proper position. It’s not like I haven’t explained it to everyone, it’s because they don’t give a shit. They don’t seem to understand that with these type of muscle contractures that I have, it needs acute inpatient rehab so you are monitored with the proper pain medications. but as we know it’s all about the money. And because their rent-a-docs feel inpatient is not medically necessary for me, I get to go through excruciating amounts of pain with in home PT. 🤬

But, I am going to play their stupid silly little games. I am going to jump through their stupid silly little hoops. What they don’t understand, or maybe they do, is I’m not going to be quiet about any of it. This happens to too many people too often. For fucks sake’s they’re running my husband’s medical care as well. But, I digress, that’s a whole other blog that I will get into very soon. 😏

So this is where I’m at right now. I haven’t been sleeping because I cry so often I can’t breathe as my whole head gets stuffed up. And quite frankly, if my PPMS is active again, it’s on Independence Blue Cross for not letting me get the health care that my doctors are trying to get for me that I need!!! Yes I completely know that I have a bunch of run on sentences, so sue me. I have never once claimed to be a writer. That’s my baby sister.

I’m sorry if it’s getting monotonous regarding my health care insurance, but I am that squeaky wheel and I cannot be quiet anymore. As always, have courage and be kind.

Darkness · FUCK · Health · HELL · Hope · Primary Progressive MS · Quotes · Ramblings · RANDOM

Bravery…

I downloaded a couple of apps for motivational quotes etc. This one popped up today and it instantly sent streams of water down my cheeks. I am brave. I go to bed at night knowing that tomorrow nothing is going to have changed for me. That’s not being pessimistic, it’s being realistic. I go to bed at night, many times, asking whatever entity is out there to please take me home… Wherever that may be. I go to bed at night knowing that there really is nothing of quality there for me when I wake up. And to me, that is bravery. The picture above is one of my most favorites. I never before thought of myself as being brave. I never before thought of myself as being strong. I have always second-guessed everything I have ever done throughout my life. I have never felt good enough for anything or anyone. My only New Year’s resolution (which is pretty new to me as I never make them because I never follow them 😂) is to be unapologetically me. I am no longer going to hide away my feelings of my past, my present, or what my future may hold.

This is definitely going to be a new ride for my blog, a new adventure if you will. I’m scared every night before I go to bed. I’m always scared…

As always, have courage and be kind! 

Dreams · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sleep · Strength

You are getting sleepy… sleepy

Sleep in one of the many wonders of the universe. Something that is not always easy for me. I think because my body is always at rest my brain is not sure when it should sleep or not sleep. 😴There have been times where I am up for 3 to 4 days without any sleep until I finally pass out from exhaustion. 😳 Thankfully that hasn’t happened in quite some time because I found a few things that really help me. I thought I would share and maybe it might help someone else.

For a while I would watch Dr. PimplePopper videos because they would knock me out. I don’t know why but her videos can be mesmerizing. LOL I know gross! But, If you know me you know I like gross. 😂

Then I started using an app called ‘Insight Timer’, which I recommend highly. I like to listen to one of the recordings that is called, Floating. It’s very calming. I found one last night that is called ‘Sacral Chakra Tibetan Singing Bowl. It was quite beautiful and I love the sound of the singing bowls. I have tried guided meditation, but like with books on tape, the voices to me were not soothing or calming. The only time I have ever been able to do guided meditation was when I was able to do yoga for MS many years ago. The yoga instructor, Colleen, had the most beautiful accent and when we would finish with yoga she would do a guided meditation with us. I always fell asleep instantly. Her voice is like an angel’s. 😇

Then a friend of mine, Victoria, sent me a link to some really cool videos called ASMR on YouTube. Autonomous sensory Meridian response (ASMR) – a feeling of well-being combined with a tingling sensation in the scalp and down the back of the neck, as experienced by some people in response to a specific gentle stimulus, often a particular sound.

I was honestly very skeptical about this. When I first started watching I have to admit I was kind of giggling a lot. What are these people doing? 😜They were clicking their tongues, tapping on various items, whispering, and doing off-the-wall role-play. But, lo and behold, the next thing I knew I was fast asleep. ‘Whispers Red’ and ‘Sophie Michelle’ are my favorites. I tried listening and watching a couple of the male ASMR videos, but their voices were not very calming to me. Sorry, not sorry! LOL

Do a search in YouTube for ASMR videos for sleep. You will find a lot.

You do have to look around because some people don’t realize we just want to have a calming video.  There is one person that does it and she’s constantly talking about how people are stealing her ideas. Seriously! Everyone pretty much does the same thing. I tried to watch hers, but it was a no go. LOL I honestly don’t want to hear about someone else’s troubles 😮 so not one of my favorites. 😊

Another thing I have tried was books on tape. The only problem with that is you can’t choose the voice. LOL I just did not like the voice of the ones I heard. I have to have a soothing voice whether it be male or female and I have yet to find one. Although, if Morgan Freeman would do every book on tape that I want, I’d be OK with it. 🖤

I hope that something I have a mentioned in this post can help someone else, because then my sleepless nights and finding things that work… are worth it. 🖤

Have courage and be kind!