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 😦

If it’s not broke, don’t fix it!

October 21, 2017February 9, 2018 ~ msgracefulnot ~ 1 Comment

On October 4, 2017, I received the following in a letter from my neurologist:

After reading this the first thing I thought was

“DAMMIT” ! Stop trying to change my medication!

I have made my decision, I don’t want to change. It works for me!

My roommate overheard my exclamation, and immediately offered his unsolicited opinion “I don’t know why you’re taking a drug that you know will probably kill you.” Followed by, “Exercise more, eat better.”

This only served to make me more angry. While for me anger is an excellent motivator, it is not a healthy place to stay. So I decided to try to interpret the reasons behind my anger.

I have spent the last week in my head trying to sort that out.

Why did I get so angry?

Because I didn’t make my decision without weighing all my options.

Having MS means I have to adjust to changes all the time

changing my plans because I am too tired, or my legs won’t work, or the weather isn’t cooperating
selecting the type of clothing I am “allowed” to wear. I have to wear easily removable bottoms because of my incontinence issues. I don’t like pants because they aggravate the pins and needles feelings in my leg. Most things don’t match the one pair of shoes I own that accommodates the AFO or orthotics I am supposed to wear.

This is working for me I don’t want to change it! It makes me remember and feel that dark place I was in when I made the decision to start Tysabri.

As for now, the blood test will wait. I have other goals to accomplish this week and have spent enough time being angry. But YAH I walked a mile so far today and have a friend coming to push me for another walk. Yah being active!

I think it would be healthy for me to work on letting go of some of those memories. Writing really does help, whether you publish or not. I am going to spend some more time this week writing about my decision to start and stay on Tysabri. At the very least, putting it out there will free up some space in my head 🙂

Why don’t you work?

October 18, 2017October 8, 2018 ~ msgracefulnot ~ 6 Comments

*please be advised before reading this…This post contains foul language and a dose of sarcasm*

It never fails, the question will always come up, often more than once. You may be filling out paperwork for Social Security, medical leave for an employer, or some insensitive asshat comes home from work and says, “Well I worked all day, what did you do?” Or “Why didn’t you get that done?”

Let me start with the basic “easy” answer. I HAVE MULTIPLE SCLEROSIS

For me, this means:

I have doctor appointments EVERY week, sometimes EVERY DAY of EVERY week dealing with whatever the most pressing issue for the week is. These “issues” include:

Urinary and Bowel Incontinence (most often in public of course)
Balance and ambulatory difficulties (numb and extremely heavy legs, and almost 0 core muscles.)
Short term memory issues and other cognitive fogginess
Pain
Fatigue
Depression….who would have guessed?

When I am not AT a doctor appointment, I deal with Insurance Companies and pharmacies on a weekly basis. This includes:

Borrowing from Peter to pay Paul
Applying for various drug companies financial aid programs. (My copay for Tysabri is $1200.00 a month. This is after Medicare is billed $35,000 each month.)
Calling doctors to ask them to fill out additional paperwork for the insurance company to explain the necessity for the drug. (even though I have been taking most of the same ones for the same reasons for many years.)

HEY FOLKS, there is NOT a cure for MS!!!!

I just realized that I have more contacts in my phone for medical issues than I do for friends and family 😦

Believe it or not, I also spend a lot of time trying to take care of and HELP MYSELF:

Some form of additional physical activity each day ( walking, stretching, yoga)
Keeping up to date with current treatments for MS symptoms
Occasionally I even shower and Brush my teeth :P. DON”T LAUGH, some days I don’t even have the energy to do that.

So back to the original question……… “Why don’t you work?”

Here is my Angry answer:

Who says I don’t? I work harder each and every single day NOW than I ever did when I had a “full time job” working 60- 80 hours a week. Who the fuck are you to tell me I don’t work?

I wish I could go into work for a set 8 hours a day to the same place, doing the same thing, because then at least I would know what to expect. I would know that it was going to end at some point. I didn’t ask for this shit.

I feel like someone has given me the keys to an 18 wheeler and told me I had 2 days to drive a load of cattle from the state of Washington to the state of Florida. Oh I forgot to mention, I don’t know how to drive an 18 wheeler, nor do I know anything about cattle. Where is the sense in that?… but you can learn right? Yes just pencil that in on my calendar wherever you find a free spot. Please remember that it will take me twice as long to POSSIBLY retain the new information since my brain tries to store information in its plaque covered areas

I’m not asking for a “cookie” or your pity. I’m just telling you I don’t need your damn judgment either. So basically my answer to why I don’t work is……….FUCK YOU….Have a nice day!