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 😦

A day of Needles

December 8, 2017February 23, 2020 ~ msgracefulnot ~ 18 Comments

Today’s day as a “professional patient” consisted of Needles. Actually not lots of needles, only two, but for me TWO IS TOO MANY!!!! First Stop this morning was PTNS or Percutaneous Tibial Nerve Stimulation for those of you that like BIG SCARY WORDS. The purpose? To help with Bladder Incontinence. While it does help, it doesn’t FIX IT, at least for me. Considering the options for Incontinence Treatments, other than taking yet ANOTHER PHARMACEUTICAL DRUG, or having another surgery, this one is not too bad and it is only for one half hour a month with an acupuncture type needle. I will take it.

Percutaneous Tibial Nerve Stimulation Video

After that was done, I got to visit with the “Vampires” (blood thirsty blood drawers that they are)…. but yah only one stick this time!!!!

They wouldn’t let me take a picture of the blood draw…silly Hipaa laws…. It is still my body isn’t it? (For anyone reading this that is not from the US, Hipaa is another example of all the ridiculous laws we have in the United States……

All in all not a bad day, and to be honest, I wanted to see how adding a video on wordpress worked. If anyone clicks on it, can you tell me what you think? I’m always trying to learn new things. On that note, Have a great weekend everyone! 🙂

Do you look like your pet?

December 3, 2017February 9, 2018 ~ msgracefulnot ~ 10 Comments

As I laid my head on my “dog pillow” the other day, I noticed that our hair consists of the same colors (blonde and black). It made me recall a meme, post, article, or video that I have seen that showed numerous pictures of dogs and their owners with very scary resemblances. I began to wonder if there were other similarities… while my mouth is always open like hers seems to be, ( I talk ALOT) I think I have a bit better control at keeping my tongue inside my mouth. Then again, I also think people that know me in real life have plenty of pictures of me sticking my tongue out. (Not sure if it counts that I stick my tongue out on purpose, I think my dogs tongue just hangs out.) I don’t think my ears are nearly as big, or my nose for that matter, but we definitely have the matching hair color thing going on. By the way, my GSD’s name is SNUFF.

My other dog is D.O.G. (not dog, but each letter individually, D.O.G). I think she thinks her name is MOVE, GET OFF THE COUCH, and YOU’VE GOT TO BE FRICKING KIDDING ME, though. She looks at me whenever I say those things so maybe, poor D.O.G.

Actually there is nothing poor about D.O.G., she is spoiled rotten. She is allowed on my bed, she gets lifted into the car, she even sits in the front seat, and for being the smaller of the two (three if you count me) she is the ruler of the “bitches”.

I will save the discussion of my three cats for another day, but Foxy, the white one, rules the whole house. As usual I digress….

So about D.O.G…..

I have always been an animal lover, but the last dog I had was hit by a car, and killed while a friend was “petsitting”. (That was almost 15 years ago.) It took me seven years before I could bring myself to get another dog, and the initial reason I got her was for companionship when my MS put me in a wheelchair. Over the years, we have become codependent. I don’t like to sleep without her and she doesn’t like me leaving the house without her. So I guess it works?

OMG am I ADHD!!! The point is, do I look like D.O.G? If you ever saw me “precoffee” I am sure I do.

I love how her teeth are spaced like that! And ok maybe we both have a face that only a mother could love 🙂

So that’s it! That’s my life in a nutshell. Beautiful children and animals, coffee and cigarettes, and lots of horrible prescriptions for a nasty monster of a disease. MS really sucks!

When I was telling a friend about the do pets look like their owners meme, she says, “Oh yes, I can totally see you and snuff…..you even cock your head to the side like she does when someone is talking to you and you don’t understand”…..SMH FML and all that.

Thank you all for reading along. One day I will actually get to the point of why I started this blog and talk about how to cope with MS, depression, ADHD, etc, but for now I am having so much fun meeting new people and those things just plain suck to think about.

Do you have any pets? Do you look like your pets? Do you know anyone who does? Please feel free to share them to my facebook page if you do. 🙂

Oh NO, ANOTHER POST about Tysabri

December 2, 2017October 8, 2018 ~ msgracefulnot ~ 15 Comments

Actually, it’s not really about Tysabri, but I do want to talk about it for a minute. ( Which we all know will be 700 words about Tysabri)….Well maybe not, I’m still “precoffee”. Anyway, I digress…Yesterday and this morning I received numerous texts and messages wishing me well and seeing if I was ok because it was Tysabri infusion day, and to be honest the drug does “kick my ass” FOR A DAY. Only for a day. Before I started it, MS was kicking my ass EVERY DAY! Ok, I was letting MS kick my ass everyday, either way it is only for ONE DAY.

I slept all day yesterday. (Well my brain did.) There is evidence that my body attempted to function because their is a full ashtray by the couch where my cross- stitch sits. (Somehow more of that is completed too?!!?) My dogs, aren’t completely up my ass so I must have fed them too… Einstein ate (Evidence of an empty bag of CHEEZITS is on the floor next to his desk)….smh

My tummy isn’t rumbling, so I must have handled that too. THAT is actually the reason I am writing this morning. There are so many worse things in the world. I am not hungry, I have a roof over my head, my kids are healthy, and I am fortunate enough to still have both of my parents in my life. The point is THINGS COULD BE ALOT WORSE. Losing ONE DAY a month to treating MS is so much better than the every other night shot, followed by a day of fever, chills, and vomiting. I’ve GOT this! (and apparently a day of catch up)….lol

I have been waiting for coffee the entire time I rambled this only to find that the coffee machine (ok ok Espresso machine) is broken. OMG IT WONT TURN ON!!!! No pretty blue lights (YES IT IS PLUGGED IN) The button won’t even push…..GRRRRRRR… OMG, Now I do need help!!!!!! DOES ANYONE DELIVER?!??!

HEH! Anyone that knows me in real life KNOWS I have a back up plan, and a back up coffee maker, and a backup pack of cigarettes…and and and…. But Seriously, My Espresso machine is broken and I do have to play “catch up” from yesterday while attempting to function on 1/4 of my daily caffeine intake. 😦

I hope everyone has a fantastic day today and a great weekend 🙂

If you happen to have any free time, please send or deliver coffee. OR… stop by My coffee pinterest board and add your favorite pin or post it on my Facebook page? Have a Great weekend everyone! 🙂 See you next week!

Photo credit: http://www.capejava.com/

Choosing Tysabri

November 2, 2017October 8, 2018 ~ msgracefulnot ~ 12 Comments

I received my # 95th dose of Tysabri yesterday, and FINALLY did the bloodwork for The JC Virus that is required.

While writing My decision to start Tysabri (the 5 part series) last week, I was able to work through my emotions regarding pressure to change medications and I have solidified my decision to stay on Tysabri. Maybe not for the rest of my life, but for now, it works. I am fully aware of the risks associated with remaining on the drug, but this is MY Decision, My MS, and MY LIFE. (I may have to work on finding a new doctor soon, but I will deal with that when the time comes as well.)

So to answer the question, “Why did you choose Tysabri?”

BECAUSE FOR ME, IT WORKS!

I am fully aware of the risks associated with the drug, but I believe….

I did not ASK for MS, but you play the hand you are dealt. I would rather have QUALITY of life than Quantity. Hell, I jumped out of a perfectly good airplane remember? Both of my daughters are in their 20’s, and although none of us want to “say goodbye”, I know they are strong and have all the tools they need to survive in this world. Hell, I believe they are also strong enough to help change it. The world we live in today is a scary place. (I think the city I live in was ranked the 6th most dangerous city in the United States.) My point is that I am more likely to be shot sitting at a traffic light, than to die from MS or PML. When I do die, whatever the cause, I am donating my body to science. Maybe they can find a cure for MS that way?

For now, I am making the most of each day I have. If I can help ONE person feel not so scared and alone in this world… I have lived.