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 😦