Happiness · Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings

Mommy pay attention to me!

My appointment with my pain management doctor went well yesterday. We are looking into at home rehab, when the world isn’t so crazy. I decided that I will talk about a baclofen pump. I really did not want anything else embedded into my body, but if it helps me get through my leg spasticity and helps with pain, I’ll do it. I was just concerned because I already have a PowerPort, my colostomy, and of course my urostomy, on my and in my person. I have to do what helps. We are going to work very hard on getting my legs used to sitting in my wheelchair. The swelling is awful when I sit for too long. I am finding that as long as I have my Forrest Gump shoes on it is not as bad. I will have to invest in some good compression socks. With my husband home for a while, thanks to COVID-19, we’ve been trying to move my legs more and more every day. It will be a process because I have been stuck in this bed for six years.

I have my neurologist appointment today at 1:45 PM. That was very cool of them to get me in right away since yesterday they had to cancel. Thankfully their computers are back up and working! I have my list of questions that will be open and ready when the call comes through. Wish me luck! 

I contacted JS at Independence Blue Cross today regarding my transport to and from my doctors as I received another explanation of benefits saying it was denied etc. It seems he is taking care of this and I will wait before sending my appeal in. if you’re reading this JS, thank you! 

This is my baby girl who never leaves my side. She is wondering why I’m not paying any attention to her today. But I’ve had some things to do this morning. 😁 I know that once she gets her c-o-o-k-i-e she will be very happy. I have to spell it out or she would’ve known exactly what I was saying. 

Now I have some time to surf around the Internet before my appointment. I can’t believe I have gotten everything done before noon. I even ate breakfast and had my coffee. I did have a little bit of a low last night. A big shout out to my husband for talking me down. I love you more than my luggage! I hope everyone is having their best day possible. If not remember it’s just a bad day, not a bad life.

Have courage and be kind.

Health · HELL · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

To the people that I cherish so much

I feel I owe explanation of what’s going on with me. In August when I was denied rehab my heart broke and my mind fractured. When I got the explanation of benefits for the ambulance ride that was denied I felt completely betrayed. Jason Sweeney the executive at Independence Blue Cross, gave me those names of those companies to take me. Then after I was taken to my doctors he explained they don’t cover that Service. I have a very hard time dealing with incompetence and stupidity. And now I’m having a very hard time continuing to live the way I do.

I no longer want to exist. Let me explain when I mean by that, I can no longer live trapped in this bed for another six years, another 20 years. The pain I suffer on a daily basis is enough to make me want to leave this earth. I came very close two days ago to leaving. Moving my toes hurts, raising my arms hurts. It’s as if there is no end in sight. As of right now I can barely even move my arms. Thank the universe for talk text. I think that’s when it all came to a head.

Now I will backtrack a little bit to maybe help explain more of what’s happened to me in the last two years.

In February 2018 I came to the conclusion that I did not want to live. In that instance I called an ambulance and said I needed help. To make a long story short they got me help. They got me in the acute rehabilitation center at Palmdale regional. For one month I was there and I was getting better. But Independence Blue Cross decided they didn’t need to be there anymore so they kicked me to the curb. A couple times in-home therapy came but unfortunately he rarely showed up and when he did, he did nothing.

August 2019 we were trying to transfer me for a shower we got me in my Hoyer lift and the pain was so bad I thought I had broken another bone in my back since I already have two fractures. Thankfully there were no breaks but while I was at Palmdale regional Medical Center we tried getting me back into rehab there. Independence Blue Cross denied the request even though a previous they approved it.

So this doesn’t go on till the end of time, here and here are more of the backstory of trying to get into Palmdale regional medical center.

I will be sending this along with my denial letters (with highlighted comments and lies from Independence Blue Cross) and other correspondence to anyone who will listen. LA Times, NBC, CBS, ABC, Oprah, Montel Williams, Ellen, anyone that would like a good story on how insurance companies knowingly and willinglywillingly kill The people that rely on their care. I will also be doing research on how many people have perished because of Independence Blue Cross.

But again, I will not live another six years in this bed. Understand that as you will, but I am not living already. I’ve been dead inside for six years.

Have courage and be kind.

Multiple Sclerosis · Primary Progressive MS · Ramblings · Silly

MS Awareness Month day 30

The month is winding down and as we all know it’s been a crazy one. With Covid-19 floating around we all have to be a little extra careful thanks to our wonderful autoimmune disorder. Especially those of you on a DMD, please take extra precautions. My heart, hope, and love is with you all!

And with everything going on, I think we need a little humor from time to time.

Have courage and be kind.

Quotes · Ramblings · Sarcasm · Silly

Snarky Saturday

I really have no more fucks to give. sorry, not sorry…

Does it hurt me? In all honesty, nope, not anymore. Don’t get me wrong, in the past it would break me. But now when people make it known that they don’t like me, it’s completely fine. Take a number! 😂 It’s almost like the trash taking itself out when they go away. I have so many more pressing things going on in my life that I really don’t have time to worry about the people that don’t find me wonderfully charming. If you don’t like me, buh-bye! Pretty simple. 

And as always, even when I’m being snarky, have courage and be kind! (and yes I do see the irony) ☺️

Craziness · Ramblings · RANDOM · Sarcasm · Silly · Stupid Stuff

Have the day you deserve! Wednesday feelings…

It seems sarcasm and humor pisses people off. Well unfortunately that’s how I get through my days. The Internet is full of keyboard warriors. you’re really tough behind that computer screen aren’t you? 😂 The saddest part about it is if they really knew who you were, they would understand how you’re feeling and why sometimes a snarky joke gets me through the day. Instead they have to make a public announcement of how disappointed they are in you. Seriously I could care less what you think of me or if you’re disappointed in me. You’re not my parents nor are you my husband or children. If you have a problem with someone, be adult, message them instead of calling them out in front of everyone because you need attention. If something I post offends you, then scroll right by. i’ve been out of high school for a very long time and I don’t need it in my life now. I’m very happy that on many social media sites you can unfriend, unfollow, and block people. It’s much easier to just do that instead of making an announcement. Toxic people suck. I guess that me being brutally honest and unapologetically me doesn’t work for some people. Oh well… Bye Felicia 😇

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! 

Ramblings

I’m the great pretender

Even when it’s not OK… It’s just easier. Either way I don’t like telling how I’m feeling because it’s just too depressing.

Right now not much is OK. We think that I may have a possible fracture in my right hip from when we were doing my leg exercises. Our doctor appointment with the pain management doctor was today and I couldn’t go because the moment I’m rolled over to get in my Hoyer lift the pain is just too much. So I was hoping that the pain management doctor would possibly help me by getting an ambulance to pick me up get me to the hospital for x-rays. I guess they don’t do that. He really wants me to get to the hospital but there’s no way he can help me do it. Unfortunately we cannot afford an ambulance bill because our insurance thinks they’re out of network. AMR charges about $2000 a trip for a 4 mile drive. Now eventually my insurance pays for it after I appeal it one or more times. I’m tired of having to do that every time so it’s just easier not to get the ambulance. Then if I go to emergency the  emergency room doctors are always out of network, so I have to fight the insurance company again. And usually for a two minute interaction with the doctor it’s anywhere from $1600-$2400. I am so fucking tired of having to fight every time.

So now I don’t know what I should do. I’ve been let down time and time again by these doctors out here say that want to help me and then just passing the buck or don’t go out of their way at all to help me. All my pain management doctor had to do was make a phone call but I guess that’s not his job.  Who knows maybe things are different now… the way our country is going right now everything is fucked up.

So now I am going to try and find an ambulance that takes my insurance because I know AMR does not.  But then I run into that catch 22 of having to deal with the out of network doctor at the emergency room. I just can’t fucking win. 😳

There was an article about another celebrity and her anxiety due to her multiple sclerosis. Now while I feel horribly bad for anyone being stuck with this disease celebrities will never know the real struggle. They will never know what it’s like to not have money for help. They will never know what it’s like having doctors drop the ball on them because they can afford the good doctors. So yes I feel very bad for anyone with this disease, but please if you’re a celebrity don’t act like you know the struggles and how hard it is. You have the luxury of being able to get help. I know I sound like an asshole and bitter, but if I were a celebrity I wouldn’t have these issues.

As always you lovely people… Have courage and be kind! 🖤

Silly

This is my kind of procrastinating!!!

 

Thank you to Greg my friend  from an amazing MS support group, We’re the Fucking MS-kateers. (link on the sidebar my favorite place)

This is so true. Coffee first, questions later. 😂  That is, if you want to live. LMAO

Please remember especially in the times were living in now, have courage and be kind!

Christmas · Fear · FUCK · Holiday · Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Sarcasm · Silly

All I hear is blah blah blah… I’m a dirty tramp

I can’t help it, I love that movie and that part of the movie. One of my favorite movie lines! #MrDeeds

My blog title has nothing to do with how I’m feeling though. Living with so much uncertainty in life sucks!  I’m always waiting for that other proverbial  shoe to drop.  I ask myself every day why do I even bother getting up in the morning err waking up because I don’t really get up at all. 🤔

Most people have something to look forward to they can make future plans. I don’t have that option. I have no way to a slow or stop my progression of my MS so I really do wonder why I bother.  But, I will wake up every morning and lie this bed and figure out a way to get through each day lying in this bed. I think I need to invest in a good mattress LMAO but that won’t happen until pigs fly out of my ass. 😂🤣 Good mattresses are too fucking expensive. What a rip off.

That is all for now… I know you’re happy about that. Remember, have courage and be kind!

Circa: a long time ago in a far off land…