Health · Medical · Multiple Sclerosis · PAIN · Ramblings · RANDOM · sadness · Strength

DeNiEd AgAiN

Some of the not so great things that happened to me in the past six months or so is that I was denied acute physical therapy rehab. I went through every one of their appeals and was denied every time. They say for me it’s not medically necessary and basically that’s the only reason given. Let me think, I have severe hip contractures due to being bedridden, yet acute physical therapy isn’t medically necessary for me. 🤔 The story goes a little something like this…

On August 18, 2019 my husband was trying to get me into the sling for my Hoyer lift so I could get out of bed. As he started lifting me and the sling pulled up around my body, the pain was so excruciating I really believed my hips were going to break. Needless to say I never made it all the way up or out of my bed. We called 911 and I was taken to Palmdale regional medical Center. At that time we weren’t really sure what my hip pain was. We knew that my knees and ankles had contracture issues, but my pain management doctor was saying it might be arthritis, osteoporosis etc.. The ER doctor explained that my hips had contractures just like the rest of my legs. It was as if a💡went off in my head. Like, no shit… oh my god how could my other doctor(s) not figure this the fuck out. The rehab institute at Palmdale regional medical Center was where I had been for one month in February 2018, so I asked if they could contact my doctors and try to get me back in. It took the next two nights and three days before Independence Blue Cross came back with, DENIED. After exhausting all four of my appeals, (4months) I was DENIED Rehab. Not medically necessary. I completely understand that the doctors that work at these insurance companies are basically rent-a-docs that probably can’t get a job at a legitimate place, but come on, I’m the poster child for rehab.  In fact, for how severe my contractures are, the only options are surgery or acute physical therapy. So that in a nutshell is my denial for, realistically, life-saving therapy for me…Now on to my new dilemma where I’m being denied. They are now saying that they will not pay for my ER visit because it was not an emergency. 🤬 When a representative from Independence Blue Cross called me to ask about this appeal for this charge, I told her what the emergency was. I explained the same thing that is stated above; how I was trying to get out of bed with the use of my Hoyer lift and the pain was so excruciating from the muscle contracture’s that I could not do it. I could not move!! Now in my book that’s a fucking emergency. obviously it was an emergency enough that they paid for the ambulance. I mean really for fucks sake.

(Attached) is what the incompetent person, I’m trying to be nice about this, said in the DENIAL letter. “You stated that you were experiencing difficulty and could not stand so you went to the emergency room for services” is she fucking kidding me?!! First off I would never have said that because I haven’t been able to stand for 6 years 2 months!!! For fucks sake I’ve barely been able to get out of my bed. I’m not sure what part of, I’m bedridden and I was having pain in my hips trying to be lifted in my Hoyer lift, that she didn’t understand. So she either lied on that form or she just didn’t give a shit to listen to what I had to say.I bet it’s a little bit of both… Lied so that the insurance company wouldn’t have to pay which falls right in line with doesn’t really give a shit. I have a call in to her, so we will see if she calls back. They are on EST and right now it’s 4:56 PM PST, so I bet she’s just not gonna call back. I really believe that these people and these money corporations do this often so people like me are not given the care that is needed. They think they can be our doctors and that they know better than our doctors.🖕

So now I get to deal with all of this. Sorry the little attachment above is a little wrinkled. When I read that line for the first time, I lost it. Everything and anything in my reach was thrown. When I realized I was trying to pull my hair out and the scratching on my face started hurting I just broke down into a big heap of tears.

At this point my body has deteriorated more and more and my muscle contractures have gotten worse and worse. I have so many calls in to so many people and they either don’t call back, or they’re rude. If anyone reads this and you know of anyone that could help me, attorney, disability advocate, hell a juggler, 😜 please send them my way. I really don’t know how much longer I can go on. Have courage and be kind.



Anger · Craziness · Darkness · Health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Sarcasm · Strength · Stupid Stuff

Trapped Inside

This GIF popped up on Facebook and when I saw it I felt empty. I decided to post it because it really does sum up my life. I have been trapped inside my decaying body for approximately 6 years 2 months. It is actually a bit more but I removed doctors visits, visits to the store before my surgery in June 2014, and the occasional visits to my dads. In that time it equals to approximately 28-30 days that I’ve been out of my bed. I don’t know how it happened. What I mean by that is, I don’t know how it got so bad. October 10, 2013 I fell. I was transferring to go to the bathroom, and as I stood up my legs went limp like cooked noodles. They did no x-rays at the hospital that I can remember, they just really chalked it up to MS. The hospital and my doctors knew that I was unable to stand sit up, pretty much paralyzed from the waist down, etc. They did the Solu-Medrol bullshit which did nothing for me. Then they basically sent me home with no real after care.

This is where I don’t know how it all happened. The fall definitely started it, and then I go blank. The depression I remember was paralyzing just like my body. Then in a weird whirlwind of doctors appointments the next thing I knew I was scheduled for colostomy and urostomy surgeries for June 10, 2014. Was this medically necessary or was it done to make it easier for everyone around me? I don’t really know anymore.

Why wasn’t I offered acute rehab? Why wasn’t I offered in-home nursing care? I don’t know! 🤷🏻‍♀️ I do know that a friend, an RN, had to come to my house to catheterize me so I didn’t piss my bed every five minutes. Not sure why my doctors or the hospital didn’t do that for me. I also know, looking back, that I was completely fucking lost. I have never been someone to lie down and be stomped on, but I guess I could not find my strength back then. The surgery, for me, what horrific.  and the next couple of years were literally lived as if I were in a dream.I will fast forward to now, because I don’t have the energy to really talk about it much more. All I know is I am trapped in a body that is destroying itself from the inside out. Since I was denied rehab August 18, 2019 my body is deteriorating more and more. i’ve exhausted, in their mind, all appeals. DENIED!! 🤬  Because of this, my legs are becoming more contracted. Independence Blue Cross basically feels it’s not medically necessary for me, acute rehab! Because their doctors I guess are my doctors now and they know better. Are they fucking kidding me! I’m the fucking poster child for acute rehab! Here is a link of what is happening to me and what I sent to the insurance company thinking they would actually understand it and help me. Bahahaha They either cannot read or they just don’t care. I’m going with the latter. People are telling me I should contact news agencies, attorneys, etc., but the places I’ve contacted obviously don’t think that any of this is wrong. Either that or they’re just scared to death to take on Independence Blue Cross. I guess in the world we’re in right now it’s OK for companies like this to throw away the disabled, people with chronic illness, because we are the people no one really gives a shit about. And quite frankly, I’m tired!!! I have no help whatsoever! Mentally, physically… Nothing. 

I am 100% in prison for crimes that I have never committed. The prison that is my body and the four walls of my bedroom. There is only one or two people that completely understand what I’m going through that I know. And when other people say, they know what I’m going through, they completely understand, yet that person/persons are shown standing up in pictures and going places with family… no, you have no fucking clue what I’m going through. And you should be really fucking glad you don’t. If I were able to even stand up I would never be in this fucking bed. So please don’t talk of things of which you know nothing about. You may share my illness but you don’t share what’s happening to me.

What I hate the most about all of this is the person I’m slowly becoming. I really do believe I’m going to little mad, I can no longer see the light at the end of that tunnel, and I’m not sure why I even bother anymore. Yes it’s a new year blah blah blah… but for me there will be no changes. AND I am NOT being pessimistic, I’m being realistic!  I will add that you don’t need to worry people, I’m not gonna kill myself, off myself, end it, whatever. Do I think about doing that every fucking day… Yes I fucking do! But, I won’t and believe me it’s not for the reasons that you are probably thinking. And now, I think I’m done for the day and I think I’m going to medicate so that I don’t care what’s happening to me. And for those of you that act like I’m a stoner or something, fucking A right I am! Cannabis isn’t going to kill my kidneys or my liver like Norco and Xanax and all the other drugs they want to put me on. So yeah I love my weed. And to anyone that says that’s bad for you or it’s addicting or it’s a gateway drug, educate your stupid ass! Or better yet go pour yourself another drink or take one of your sleeping pills and then talk to me. OK I’m getting off base and I’m starting to get pissed so I’m going to end this for today.

So are you loving my new unapologetically me yet?

As always, have courage and be kind!

Craziness · FUCK · Health · Multiple Sclerosis · Primary Progressive MS · Ramblings · Sarcasm · Stupid Stuff

The word FuCk…

I made this last night and posted on Facebook because that was the type of day/night I was having. Sometimes I will literally put my pillow over my face and scream at the top of my lungs. It really does help. 🤷🏻‍♀️

The word fuck has so many different meanings. It can be used for pleasure, anger, sarcasm, jokes. I will admit, it’s my favorite word. I’ve heard that people who are sarcastic and/or use profanity are more intelligent than those that don’t. I mean hey, I fully believe that. 😜 No, I really do believe it.

I’m pretty sure I did a blog about this sometime ago, but I’m too damn lazy to check. And I don’t care. LOL I feel if I wanna do the same blog post every fucking day, I can. 😂

I’ve been told to act my age, grow up, etc.… Fuck that. I’m 55, soon to be 56 in March, I can do what I fucking want. I tell people that I’m level 55 or 30 with 25 years experience. I mean, I’ve never been this age before, so I’m not really sure who I need to look to for age experience. My body feels like it’s 1 million years old, my mind is that of a teenager. I never want to lose that part of me. That’s the part of me that gets me through the nights that I don’t want to get through. 

I’m learning that I can no longer care what people think of me. I’ve done that my whole life and I haven’t been happy. I’ve been judged by so many people and when I look at the people who are doing it, glass houses… I’m done conforming to what people want me to be. Like I’ve said, I’m going to be unapologetically me. Those that do not like the new me, can fuck off. My real family my real friends will embrace this me. The other people don’t matter. I am still a work in progress regarding this. But I’ll get there.To anyone reading this, be unapologetically you as well. You’re the only one that lives your life! ♥️

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!

Darkness · 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 · Darkness · 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 · FUCK · Hope · Multiple Sclerosis · PAIN · Primary Progressive MS

And they dropped the ball

When I fell November 10, 2013 it landed me completely in the bed. Now I would think doctors would know the issues that come with being trapped in the bed. Legs falling to the side for comfort which makes you end up with frog legs in essence. I didn’t know until this past February when I was in rehab that they actually have little shoes/boots for this. Why in the fuck didn’t my doctors get me these hundred dollar pair shoes. The pain I’m in is from my hips being tilted to the side for five years and these cheap little shoes could’ve stopped that from happening for me.

EZ  boot orthotic system 

I’m talking about this now because I’ve been trying to use the ones I got at rehab to slowly put my legs back in the proper position and it feels like it’s too late. Because my legs and my drop foot have been in that same position for so long it fights against the boots. So what happens is I get pressure sores on the sides of my feet. I’m so angry right now. I have no help I’m trying so hard to do it on my own but it’s fucking hard. My husband cannot do it all and if they had just gotten me these little shoes so many of my issues would not be happening.

❗️I’m talking about this because I just want others to know if you end up in your bed for any period of time invest in these hundred dollar pair of little shoe things so your legs stay in proper alignment. I wish someone had told me five years ago because I would not be in the position I’m in now. As I stated above it hurts so much right now to have them on that I don’t know if I’ll ever be able to get my legs back in position.

There’s a picture of Denzel because I just watched the movie the bone collector and noticed he had a pair of these shoe things on for the movie. 😜
I really need to get with the neurologists out here and tell them that they have dropped the ball on me for way too fucking long and it’s time they fucking help me. It’s too hard to drive long distance to another neurologist. But I’m telling you if they don’t start doing their job to help me I’ll take the long drive.

This last picture are my boots and I’m still not able to twist the hip or put the kickstand up. My feet are getting used to being in a normal position and it fucking hurts. They normally point and fall out. I really hope this works. I know it’s gonna take A long time.  My doctors dropped ball… And in my depression I let them. 😪

I am sorry for the book. 🤓
I’m pretty sure that I repeated myself a lot and I’m really sorry tonight is a bad MS night. But I’m still Kickin and my wheels are turning because something good has to happen! It has to. ♥️👊

Have courage and be kind