Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

Oooo Ooo Memories

Another Facebook memory popped up. Wow… I was working so hard, and for what? Independence Blue Cross kicked me out after 30 days. At that time I’ve been bedridden for over 4 years. Did they really think it would be that quick? Their doctors truly are incompetent if they don’t understand what happens to a person’s body that’s been bedridden. They obviously don’t because they denied me life-saving care. And again when I say life-saving care, I’m not over exaggerating. At this point I’ve been in this bed over six years. I’m not going to spend another 6 years in this bed. And whatever happens, it is totally on them. Good or bad…

AnyWho… On to the memory:

Hello to all my amazing friends. I’m asking yet again for your help. Tomorrow is the big day when we find out if insurance will give me another week. Please keep me in your thoughts, blessings, prayers, cross your fingers and anything else you may do. I’m trying to keep positive and send out good thoughts to the Universe.🤞🏻

I’ve made some excellent strides in the past two weeks. While I can sit up unattended by myself, and my legs and arms have gotten back some movement, I still need to be able to transfer on my own before I go home. I’m still not able to get up into the sitting position by myself and I still cannot hold my weight on my legs. It’s like they’re explaining to me, I was completely bedridden for four years. It’s not going to change overnight and I have to keep positive thoughts for a good outcome.

I’m one of those people that wants it done like yesterday. 😜 Type A personality all the way.

So send me some good juju and hopefully tomorrow I’ll have some good news! 🧡 No matter what happens I will continue to fight the MonSter that is MS.

#MSWarrior #PrimaryProgressivemultiplesclerosis

A little sidenote, if there’s any wealthy beneficiaries out there, hook a girl up with some real care. 😏 OK, just kidding… Or am I?

Have courage and be kind.

Multiple Sclerosis · Primary Progressive MS · Ramblings

MS Awareness Month Day 5

I was dx’ed by a PA by my walk… the ‘drunk walk’. Years of searching and no MD could figure me out. He simply asked me to walk about 10 feet. Then he ordered an MRI. And finally I found my diagnosis. 🖤

Walking got very hard very quickly. It feels like your legs become tree trunks. And then of course if you are lucky enough to get drop foot, well you know how fun that is. #MSAwareness #MarchIsMSAwarenessMonth

Have courage and be kind!

Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · Strength

MS Awareness Month Day 4

This is a big one for us. MS Fatigue is not just being ‘tired’. It’s as if your soul has been sucked out of you and you just cannot wake up. unfortunately while we are all different in our MS journeys, this one is pretty common to us all. #MSAwareness #MSawarenessMonth

Check out Positive Living With MS. It’s a wonderful site.

Have courage and be kind.

FUCK · Health · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sarcasm · Strength

Be the bad ass you were meant to be!

I’m telling you today is already on my nerves. I got my bladder surgery scheduled and the pre-surgery doctors appointment. I did what I was told and called to get the pre-certification for the non-emergent transport, and was told my doctor needs to call. Now a week and a half ago the Young lady at Accolade called with me on the phone and took care of this for me. I think something must have happened because today no one will help me do it. Then, this weekend I received a new bill from my August 2019 stay and while getting my papers all together I found one I’d forgotten about. Previously I was told that my responsibility would be $50.90, but these bills together are $3000 and some change. I think someone’s messing with me. Am I on candid camera? Or maybe the TV show Punked came back. I know the wizard is behind the curtain. 😂

Trust me this morning I haven’t been strong. I’ve been crying a lot because it’s so overwhelming right now. This company (Independence Blue Cross) and their people are keeping proper care from me and making everything I need that much harder. it’s been a big eye-opening experience for me. I used to think people were exaggerating when they said their health insurance wasn’t helping them etc. I mean how can your health insurance not help you when you pay for that service?! Right? It has been boldly thrown into my face that it’s all about the money and the greed of these corporations. They have the money to put me in a top-of-the-line acute neurological rehab, but they’re not going to do it because that would take away from their paychecks. I am tired, I am discouraged, I am broken, but I will not be defeated! If they’re doing this to me how many other people have they done this to? And how many of those people did not have the strength or even know what to do to get help. This is what these companies do. They prey on people like me and their rent-a-docs run our healthcare without even seeing us or meeting us. 

So, while I have had a mental breakdown this morning and am feeling myself falling into the depths of healthcare insurance hell, I will not stop! this is my life! And I really hate when my mind goes to that dark place and I pray for karma to hit each and every one of the people that are denying me the life-saving care. I don’t like being that person. I don’t want anyone to feel the depths of despair that I feel every morning I wake up and realize it’s another day trapped in this hell. I wish these people would come to my fucking home. All they would have to do is take one look at my legs and they would see how much I need their help. Oh shit, wait a minute… They DON’T FUCKING CARE! Phew… that was a close one, I almost gave them credit for being human.

I am adjusting my sails right now!! 🖤

Have courage and be kind.

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

I had so much hope…

The following is from a Facebook post I wrote exactly 2 years ago today when I was at the rehab Institute at Palmdale regional Medical Center. If Independence Blue Cross had not forced me out after one month I would not be fighting to get the proper care that I need! I found out that if they had asked to put me in a nursing home for rehabilitation they probably would’ve covered it. A nursing home!!! Are they fucking serious! You get maybe 20 to 40 minutes of rehab. In the acute rehab you get 3 to 4 hours. I am so angry because Independence Blue Cross took my life from me when they made me leave. Trust me I’m not naïve. I know it’s all about the money. Or possibly the lotto where they throw your name in a hat and decide who gets care this month. They don’t want us to get well they want us to die. I know I’ve said this before, but how can anyone consciously deny someone life-saving care. I just smile and the fact that, Karma is a bitch and she doesn’t forget. Okay… I got off track. 😜 Again the following is from my Facebook post from two years ago today:

I think I need to say something due to some private messages I am getting. What I’m doing is NOT a cure. There is NO cure for multiple sclerosis at this time. What I am doing is making me feel better mentally which is helping me physically. 💪🏻

I have primary progressive MS. Only 10% of people with MS have my type. I was diagnosed in August 1997 so I know what MS is and what it does to a person. I am not new to this. I was told from the beginning I would get worse it’s progressive and there was nothing I could do about it. So I listened to everyone and believed what everyone said. I basically gave up on me and the person I was and became MS. I feel the need to say it again, I know what MS is and how it affects people. I’m living it.

Some people say it’s hereditary. I’m the first in my family on both sides to have anything like this and I really hope it stops with me. I fully believe when you have MS you have had it your whole life. It just takes something dramatic or life-changing to bring it out. That’s my opinion only but that is how I feel about it.

I basically laid down and let it take me over. I know that my MS is progressive. I know it will always be with me until the cure is found. But I also know that by being in this program I am getting muscles back. I am moving again.

I cannot stress enough how bad I was before this. The last four years I literally never left my bed. The only time I would leave was to go to doctors appointments and that was rare. I was paralyzed from the waist down. My legs did not move for the last four years. When I went to the ER on January 16 my arms had stopped working as well. Only my right arm worked a little bit. On that night I made the choice to not end my life and to get help! It took me losing it in the ER at the doctor for them to finally listen to me. And the doctor did listen and he got me help and now I’m here!

As most of you have seen I am moving my arms now and I’m beginning to get back some of what I lost from my waist down and it’s only getting better. I am done listening to the doctors and to other people that it (physical therapy etc.) won’t change anything. This therapy I’m in IS changing everything! They know I have MS and they are working it around me. Last night I woke up and the MonSter that is MS tried to come through. I told it to get the fuck away from me, that this is my time now. This morning I worked through the feeling and I made it. 👍🏻

MS is different for all of us. But what I’m doing is helpful for all of us. It’s never a bad thing to keep moving. The old adage, move it or lose it, I learned the hard way that it is true.

So, again, I know this is not a cure. But what it’s doing for me mentally is completely amazing. I forgot what it was like to be positive. I have surrounded myself with negative for so long that I thought that’s how life was. It’s not!

If sharing my story helps even person, my journey (even the excruciating pain) will be completely worth it! 🧡

#MSWarrior #NeverGiveUpHave courage and be kind.