Craziness · 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 · Fear · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · Sadness · 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.

Fear · Primary Progressive MS · Ramblings · RANDOM · Sadness

Thoughts lost…

This quote is so true, and in its own way, scary. 

I said I was going to be unapologetically me etc. and tell my truths. A big truth and a very scary truth, is that in this moment I have no idea what or where I was going with this blog entry. The thought completely left my being. I just can’t find the words. 😪 Logically I know that it has something to do with this picture, But no matter how hard I try I cannot remember. So, I think I’m going to go and cry for a little bit…

Have courage and be kind!

Fear · Health · HELL · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM

Long time no see…

So many things have happened and I wish I could say for the better. I went through 4 appeals for rehab starting August 18 when I ended up in the hospital. I am now unable to get out of my bed thanks to the pain from the contractures in my hips and thanks to Independence Blue Cross appeals for denying me. The insurance company decided that acute rehab is not medically necessary for me.🖕 Because you know, they’re my doctors! 🤬 I’ll get more into tthat in another blog. Right now I’m just trying to find a way to not go completely mad being completely trapped in a bed. This quote is eerily true. By eerily I mean, that little piece of me… That little girl… Has saved me from leaving this earth by my own hand.

I just wanted to check in and let everyone know that I’m still around. 😜 I am going to try to blog more as I think it will help me from going mad.

When people ask me how I have not gone a little insane from being in my bed, now over six years, I honestly don’t know the answer to that. Quite possibly I have…

Have courage and be kind! 

Anger · Fear · FUCK · Health · HELL · Hope · Love · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · RANDOM

Broken

So this post might be a little long. And you don’t have to read I’m just trying to get out what I’m feeling. We are going to attempt a shower today and I’m already having anxiety. But I have to do it because PTA bed baths are not doing it for me. 😋
I just don’t want to roll over or get in that fucking Hoyer sling. It hurts so much even when I have a nice supply of cannabis on board. 😉
Some of you know I have another fracture in my back at L3 and I was supposed to see a spinal surgeon like last month, but I can’t. I don’t want to go because I don’t want to get up. And the worst part about that is, I really want to get up! I know that does not make any sense. LOL

Without help I don’t know how I’m going to ever be able to get out of this bed. But, I will keep doing what I’m doing like wiggling in the bed LOL I have some serious dance moves for someone who is in bed. 💃🏻 I just want out of it. But when I’m lying down or even when my legs are up and I’m elevated I don’t have any pain. So thankful for my adjustable bed. 🙏🏻 The minute someone moves my legs I literally want to die. It feels like my hip is going to snap and my leg is going to fall right off. Sounds like something out of a criminal minds episode. Childbirth wasn’t as painful. I will take a contraction over this any day. 😳


We rolled a couple of pillows and taped them and put a cover on to jam them on the outside of each leg to roll my hip as I’m lying down. Oh holy man! The first day I could only tolerate about five minutes because the pain was intense. But yesterday I actually kept them there for a few hours. I’m hoping that eventually I will be able to get my legs moving without pain. I don’t care what the doctors say and what my MS is going to do with me because I know if I can get rid of this pain I will be up again. I may never walk again but I will be able to transfer if I can just combat the pain. And thanks to my colostomy and urostomy I won’t have to worry about running to the bathroom every five minutes anymore. 😂 Statistically the odds are against me but I’ve never been a fan of statistics. LOL Do not tell my daughter that because that is what she graduated with honors in. 😜

I’m putting on my little arm weights more because I totally slacked off on doing my arm exercises because depression hit it once again. But my little inner child showed up and beat the crap out of depression. Hopefully it’ll stay away a little longer this time. 🤞
When things got really bad after my surgery in 2014 and I completely fell into a very dark place. The surgery almost took my life and at that time I wished it had. I think a lot of people thought that it was getting to the point where I was nearing the end. I felt it, I even had a doctor tell me my outlook was grim. It wasn’t until February 2018 that I woke up. That anniversary is coming up and it scares me. But it also reminds me that I can fight and can get better. I just want people to know don’t give up on yourself no matter how bad it might be! I have been to the depths of hell and I’ve tried to leave a couple times. For some reason they didn’t want me. LOL

Well now that I’ve written a book and I probably lost most of you after the first paragraph I am going to get myself pumped so I can take my shower and not be afraid. 💪👊

I’ll be back… Said in my best terminator voice. LOL
Have courage and be kind!

Anger · Fear · Hope · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings

Procrastinate for 500 please

Lately I think I do a lot of this in regards to doctors appointments etc. My procrastination comes from the fear of the pain it will cause to go to said doctors appointments etc. Just taking a shower is painful AF. And it’s all about my hips due to the fact my legs have been frog legs for over five years now.  And my husband rolls me over on my side I can’t explain the pain in my hip joint area. And then the moment I am in my Hoyer lift and he starts to raise it up, as my hips turn in their joint to the proper sitting position all I can do is cry.  My left hand which I have problems with, already ends up in a claw like fist when the pain hits and I literally can’t speak or function. And therein lies the main reason I don’t want to get up anymore. I can no longer handle the pain. I don’t even want to go to my pain management doctor because as I stated above it hurts to get up and be a normal person sitting like a normal person. So what can I do? I try to move my legs as much as possible on my own which is sometimes futile. My family can’t do it they have lives of their own and my husband doesn’t have time to work with me every day.

Unfortunately like you see in the movies people that are ill have caregivers that come in and out of the home. It’s not like that in real life  unless you can afford it or the state provides it.  Neither of which will happen for me. We live paycheck to paycheck but supposedly we make too much to be allowed help. Go figure 🤷🏻‍♀️ I wish it were like the movies because then I would have a physical therapist helping me daily, someone to help with my meals, showers, and my well-being. But it’s not like the movies. Lately I’ve noticed people are talking about the celebrities that have been diagnosed with MS blah blah blah. I feel for them, I do, but I don’t believe they go through the same types of issues that many of us have. They can afford getting the help they need and all that comes with being a celebrity.  I completely feel for them because they’re stuck with this fucked up disease, but I guarantee having money makes  having chronic illness a bit easier. Or maybe it doesn’t. What do I know?!

I really don’t mean to sound so bitter, but I am a little bit. LOL I think this is all coming out right now because it’s a new year and I am very clearheaded and I am confused and afraid because I really don’t know where to begin or how to get myself better.

Fuck it… I’ll think about it tomorrow… Because tomorrow is another day.

Have courage and be kind