The patient suffers when insurance plays doctor

December 20, 2017October 8, 2018 ~ msgracefulnot ~ 9 Comments

It’s 3:45 in the afternoon here. I had a very relaxing day and A FEW POTS of coffee with a friend today. We literally sat at the kitchen table and drank coffee for hours. While the fact that I sat still in one room was probably very relaxing for Danica, ( she didn’t have to follow me room to room as I fidgeted) it just dawned on me an hour ago why I was able to sit still……

SLUMP WEEK has begun 😦

What makes it worse, is knowing that this week it is going to get worse, because I have to wait an extra week plus to get my infusion of Tysabri. Yah Holiday stress and Slump week combined…oh joy. For those of you that don’t know what slump week is or haven’t heard the expression before, I have written about it in a previous post here. Defining Slump Week Tysabri.

So why do I have to wait an extra week for a medicine that I am supposed to receive every 28 days? Because …..

The HEALTHCARE SYSTEM IN THE UNITED STATES SUCKS

For those of us that are considered “Disabled” by the government ( well by doctors and then the government) Medicare controls our lives. Medicare gets to decide what kind of care you can receive and when. Makes complete sense doesn’t it? HELL NO!!! A group of individuals that are not doctors, and who have not and will not ever meet or see me, get to decide WHEN I can receive treatment for Multiple Sclerosis. I call bunk, bullshit however you want to describe it.

With the new year coming we all have “deductibles” to meet before any of our medical care is covered. I get that part, kind of….Maybe for people that do not have a chronic or incurable illness, but for people that rely on medications and treatments just to get up in the morning or be able to function at all it makes no sense. I have still not actually gotten to my point though.

My last infusion was December 1, 2017. I schedule my appointments for as close to the first of each month as possible, because in addition to meeting a yearly deductible, I personally have to meet a monthly deductible before Medicaid will consider paying the difference.

The hospital bills Medicare $34,978.93 EACH MONTH for my Tysabri Infusion.

Yes that is almost 35,000$ a month…..NOT A TYPO

After Medicare pays their 80%, or negotiated rate, the copay of $1183.52 is billed to me… Heh what the hell that’s pocket change right?

Not to me!!!!! and not to most people that are unable to work because of an illness. Hell I don’t think that is pocket change to anybody….. So anyway, this is where Medicaid comes in. Each month after I meet my Medicaid spendown of medical bills, which for the record is $380.00 a month, Medicaid will review the claim to pay the difference. Do you see why I have to have my infusion on the first of the month? I’m sorry if I haven’t been able to explain it well, it honestly makes no sense to me.

So if I were to go and get my Tysabri Infusion on Friday when I am due for it, I will not be able to get it again until January 19th of next year. It will take them how many months to process all of the claims while I WAIT to have insurance?!?!? This does not cover or include any of my prescriptions which average about $2800.00 a month, or physical therapy, etc etc etc. Basically it sucks.

I know that there are people that have it worse than me. And I know that slump week will pass, but it is definitely here now. I will spend the next week as I am now, READY FOR BED at 4 pm in the afternoon (ok its actually 5, but that’s still pretty early). In pain, with worsening symptoms. I don’t allow myself to make important decisions while I am living in a daze from the cognitive fog, so no blogging until next year? I don’t know.

So I want to take this opportunity to Wish Everyone a Happy Holiday and New Year. I also apologize in advance if it takes me a bit longer than usual to respond.

Being sick sucks 😦

The Morning After….”THE VIDEO”

December 19, 2017February 9, 2018 ~ msgracefulnot ~ 11 Comments

Yesterday, I posted a video I did as a self challenge to put myself out there and face something I was terrified of. I didn’t watch the video again until today and this morning “Pre-coffee” I made another one after I finished watching the first one.

For anyone wondering “Pre-coffee” should have a clinical definition and be categorized as some other kind of disease. ( At least for me it is) I am not a doctor, so I won’t attempt a clinical definition….. but picture this….

Or check out other pins I have collected . If you have any to share, please add them too!!…But I digress….I wanted to share some things I have learned both about myself, and about making a video, just from doing that ONE VIDEO….. Caution though…the following video was made PRE-COFFEE. (ok while having the first cup or I wouldn’t have been able to turn on my computer) But as usual I digress…

Here is my second video if you want to see

Other things I learned from making the video:

How to upload a video
I really DO NOT Enunciate ( which is why I attempted to add captions) to this one… not perfect, it’s alot of work, but yah I learned something new.
I HATE the way I LOOK and SOUND precoffee
My goofy first video encouraged someone that I consider a VERY SUCCESSFUL blogger to try something she has been putting off…. DOUBLE WIN!!!!
I’m gonna keep “doing me”. I know that If I did this or that when making a video, it would be more successful, but baby steps for now.
Drink coffee before EVER attempting to blog or video

Ok Now I’m just rambling…. Thank you again to everyone that is following me on this adventure!!!! I am really enjoying it and learning lots of new things!!!!!

Feel the Fear and DO IT ANYWAY!!!!

December 18, 2017September 22, 2018 ~ msgracefulnot ~ 21 Comments

Two months ago, I decided to start a blog…this entire post is about my experiences in the last two months as I have challenged myself to step out of my comfort zone. (kind of like a roller coaster ride)

Today’s personal challenge was to make an unedited video and post it. TBH, I have been thinking about it for about a month now, and talking myself out of it for one reason or another……. but I finally jumped and did it.

Before you watch the video, if you choose to, let me again state that there is no real point to the video, except that I needed to challenge myself to do something I was afraid of and I did it and it didn’t kill me…..YET.… my stomach is still in knots….

I began my blog/ website (whatever the technical term is about 2 months ago.) I originally had thoughts about writing about Multiple Sclerosis, but what did I want to write about? That it sucks? Yes it does! Ok, so not that….

How do you make the most of your life in spite of having MS? Better…maybe. So I decided to start there. Please keep in mind, I also just jumped into the blog thing. I had never heard of wordpress, and while I have taken a couple classes in html programming, I have never put my knowledge into practice. I created an account on wordpress.com, paid $8.00 a month upfront for a year and then my mind went completely blank. Oh shit now what? This was my first blog post.

I laughed so hard that day. I was proud of myself for FINALLY taking that first step. It just felt good. I spent the next couple of weeks writing SOMETHING almost everyday, but I could never focus on just one subject, some posts were about MS, some were technology struggles as I continued to dig into blogging concepts, some were just random rants about life.

After being in the blogging world for about a month, I realized that what I was actually trying to do is to Put myself out there, and to connect with other people. I have enjoyed chatting with other bloggers and hearing their struggles. I have met other people that are living with autoimmune disorders and chronic illnesses, and learned how they deal with life on a day to day basis. I’ve made new friendships with “millennials”, and I have learned alot about myself in the process. Most importantly, I have learned that I want to learn everything about everything, and I need to slow down a bit.

I still don’t have a topic to blog about, or a niche, other than reaching out to people, talking about my life, and learning about others. If any of that sounds cool to you, say hello, let’s talk and get to know each other. I’ve put myself out there, as scary as it was, so now it’s your turn. I don’t mean hey let’s talk on the phone everyday or anything, but I mean let’s talk…really talk about any and everything….ok well maybe not anything, but maybe you get my point…..

Ok so now for the infamous, Link to COMPLETELY POINTLESS FIRST VIDEO

Again, posting this was a personal challenge for me. I can already think of 5,000 things I could have or should have done. But there it is…..

No Good Deed goes Unpunished

December 17, 2017December 18, 2017 ~ msgracefulnot ~ 9 Comments

ONE OF THESE DAYS….. yeah right…. I would like to think that ONE OF THESE DAYS I will learn to just walk away….. but on December 7th of this year I didn’t…..

For the record, today is December 17, 2017, and the issue is still causing me a slight headache.

What happened

I went to my daughter’s house to pick up my dogs, and noticed a very large black utility cable hanging down from her neighbor’s house onto the ground. Keep walking Grace, just keep walking….. but NO! I decide to follow the cable and realize a utility pole in my daughter’s back yard is now at a 60? degree angle instead of the 90 degree angle it should be…. hmmm why didn’t I just keep walking?!?!? Visions of injured children, “sue- happy” citizens, and a possible fire hazard all flashed through my brain…..FUCK!

I knocked on the neighbors door, no one home. My daughter wasn’t home (which was why I was picking up the dogs)….. Ok ok, I can call someone,… but who do you call? I had 32% battery onmy phone, so let’s hope I pick the right place. Not an actual emergency, so not the police. I don’t know what kind of line it is…gas, electric, cable, and I’m sure as hell not gonna touch it to find out, so I decide on the Village. I google the phone number for the village and spoke with a woman named Yvonne. I explained I was at my daughter’s house and noticed that the pole was falling and that there was some kind of line on the ground and that maybe they wanted to call someone and let them know. She insisted that I needed to call Com Ed (the electric company) and let them know……

Why did I need to call? This wasn’t my house.

What if it isn’t an electric line?

Couldn’t they send someone out to investigate?

She responded that Com Ed handled all utility line reports, so I needed to call them.

I hung up shaking my head (already knowing that I would need to cancel my plans for the rest of the afternoon) because this was gonna be a long one……

I called Com Ed, and was disconnected 3 times for pressing the incorrect choices on the automated system ( apparently if you don’t want new service, don’t have a current account number, and don’t want to speak spanish, they don’t want to help you) before I reached a live person. (Well they were speaking, so I assumed they were alive, but after our call I do question whether there was an actual heartbeat or brain activity there.) I was advised that they would send someone out sometime to check it out. SOMEONE? SOMETIME?!?!? Seriously?!?!? Someone could get hurt, or again in this “sue happy” country…SUED. How about you send someone now?

Fine Fine, I will check it out myself! I went back out to see if I could determine what type of utility line it was. I followed the line to the neighbor’s house and concluded that it LOOKED like MAYBE it was a phone line???? (I still wasn’t going to touch it) I had no idea what company handled land line service since I haven’t had one in years, back to google….Yeah my phone didn’t like that……. 19% battery left. UGH!

Now a call to Frontier. I don’t even remember how many times I was disconnected before getting a live person this time, or how long it took me to explain who I was and why I was calling. DOES IT REALLY MATTER WHO THE HELL I AM? I am a good person, trying to do a good thing. After literally an hour of being transferred from one department to the next, they finally said that they would send someone out. As they were giving me the reference number my phone turned off. You have got to be kidding me!!!!!! 0% battery! SMH…. I closed my eyes, took a deep breath….well I tried. I think it is more than most people would have done, and have since learned why.

I went to go back into my daughter’s house to get the dogs, only to realize that my keys were locked inside. It’s winter in Illinois and most of the neighbors have gone south for the season. Now what?!?!? It would be kind of pointless to try to walk to call someone since I don’t actually know anyone’s phone numbers, (they are all stored in my currently dead phone). and God forbid I fell on the way. So I sat and waited. Waited for my daughter’s boyfriend to get home and let me back in…..

During those 3 hours I repeated….Mind your own business Grace, just keep walking Grace…. but I know that I won’t. It’s who I am. I care, I get involved. Even telling myself that “No Good Deed Goes Unpunished” won’t stop me. I will still take off my coat for someone that is cold, even if I am freezing. I will continue taking in stray animals, even though I already own 5. I have thought that maybe I am a masochist…maybe I am? Either way I am who I am.

I went home on the 7th feeling that at least I tried. No one had shown up while I was there. I WASTED? 4 hours of my life, and it is still not fixed. The pole is still leaning, the cable is still on the ground, but I tried. There is a little bright orange traffic cone on the cable where it meets the ground, for all the good it will do.

A fellow blogger reached out to me to say “Hi” today, (I assume because I haven’t been writing lately) and it gave me a push to do a brain dump again. THANK YOU “you who shall remain nameless at the moment”!!!

I have been trying to work up the courage to do a “live video” of some sort to introduce myself, so I haven’t been writing much while I am learning about Facebook live and youtube. My goal is to do some sort of “Hi, this is me” video this week. I have so many questions that I would like to ask fellow bloggers that I follow , maybe you have wondered the same things about me?

One Breath at a time

December 11, 2017December 11, 2017 ~ msgracefulnot ~ 17 Comments

A couple hours ago, a familiar name popped up on my cell phone. I debated about answering the phone because I had so many things I needed to do, and I knew I would get lost in conversation and end up not finishing what I was working on. Oh what the hell, I would just pick up real quick and tell him that we had to catch up later because I was busy.

I answered the phone expecting my friend to say “Hello Doll”, (which is what he usually says to me in his super sexy southern drawl.) but instead I heard a sniffle, a cough, and a sharp intake of breath. I questioned, “Ghost? (his nickname) Ghost are you ok? What’s going on?” Another sniffle, followed by, “No maam, this is his son, Levy.”…. OH FUCK! My mind thought NO! NO! NO! NO!! That’s about all I remember exactly. Levy was calling to tell me that his daddy had a stroke a week ago.

It’s amazing that when you get news like that literally hundreds of thoughts, questions, memories hit you at once. I had images of the first time we had met face to face running through my head. (We met through an online game that we had played together for 4 years hence the nickname Ghost. Mine was Milano, but my friend’s called me “Millie”.) I remembered the first time I heard his voice in real life, the hours of game play which turned into an incredible friendship, and so on and so on.

Then there was a voice through the fog…. “Milano, Millie, Maam…are you still there?”

“Oh shit, um yes yes I’m still here.”

More sniffles followed by, “Okay, maam, my daddy wanted me to let you know that he had a stroke a week ago, but he is doing ok, well he will be ok, I mean he is alive”…….

………………………………………………………………………………………………………………………………………………

Levy went on to try to explain that Ghost couldn’t talk… no not that he couldn’t talk, but that he couldn’t find the right words, or they just wouldn’t come out right. The poor kid was having trouble explaining what was happening because he didn’t understand what was happening himself. Hell I didn’t understand what was happening. I could hear Ghost in the background trying to say my name. Trying to help Levy explain, but he was getting angry that Millie kept coming out Molly, and he couldn’t make a sentence.

Somehow I was on the phone with Ghost, well kind of he was trying to talk, I was trying to understand, but then there were tears, so many tears…and they wouldn’t stop. I tried to tell Ghost that I was here for him. I would make the drive to Florida if his family needed me to. I told him I loved him and and and…. Then I was on the phone with his son again. I tried to tell him the same things I told Ghost. If they needed help, I could and would be there. There were just so many tears. In hindsight, poor kid probably thought “Oh no, I can’t handle you too”.

When I hung up the phone, I tried to make the calls to our other mutual friends letting them know why they hadn’t heard from Ghost, and to let them know he would be okay. The problem is, I didn’t know, …….I don’t know that he will be ok and again so many tears.

When I reached the “Elder” of our little group, he tried to put me at ease by explaining that this was common when someone had a stroke. It didn’t mean that he would permanently suffer, he reminded me that Ghost “IS A STUBBORN OLD COOT”….although he is only 55, he is pretty damn stubborn. I listened and cried for the next hour.

I am absolutely exhausted emotionally and physically. I am not going to jump in my car and make the 15 hour drive to Florida… yet. I am not going to drink the whole case of beer sitting in my refrigerator. (although I had envisioned doing just that) I am going to stop beating myself up that I didn’t call him last week when I saw the rocks that made me think of him. I decided instead to come here, and to write this.

We have all heard the sayings or cliches that you should always tell the people you care about that you care about them. You never know if there will be a tomorrow to tell someone. Slow down and enjoy life etc etc etc. Instead of just telling you those things, I am trying to tell you WHY I am telling you those things. Please take a minute and give your parents a call, give your kids an extra hug? Don’t be in such a hurry, and take today ONE BREATH AT A TIME.

The story with the Rocks is that over the years I have collected numerous things from people that have “touched me” or left a big impression. I’m not materialistic, it’s more something to hold onto when you are missing them, or a reminder that they are there. When I was at Ghost’s house, I asked if I could take these rocks from his patio that he designed. They were extras, but they reminded me of his characteristics….strong, hardworking creative etc. They are sitting on my deck as I haven’t figure out if I should add them to my rock garden, or my china cabinet with other things I have collected. I saw them last week and thought I should send him a picture to let him know I still had those silly rocks….but I got too busy. 😦