What I've seen a lot of this week with Affordable Care Act (Obamacare) and the government shut-down is that folks like taking a stance for something that they really don't know much about.
And please don't insert a Jimmy Kimmel video where folks think ACA and Ocare are 2 different things. People it was for TV and yes, they only showed the videos that make for good TV. I assure you there are folks who know the difference--but that wouldn't make for good late night TV.
So, I post on FB--it was a post about political crap kind of day...
Number 1---if Ocare was soooo great, then the first folks that should be FORCED to have it IS Obama and his family and then all the crooks up there in Washington. Number 2--folks like me, who have a disease with NO CURE..let me say that again...NO CURE, require medical things that most don't understand. Forget understanding the stupid Ocare--cause I understand how now, I'm going to be lucky to get treatment because of the new regulations they are putting on me..things they will now group together instead of looking at my disease. For those that are fighting soooo hard for this stupid Obamacare, I'd like for you to explain auto-immune disease ankylosing spondylitis. I certainly can explain THAT to you or if you truly want to know...walk a day in my shoes!
and then a 20 year old healthy kid replies---
Meloni, you should probably seek medical attention for that brain of yours, because I'm afraid it doesn't have the capacity to make a legitimate argument. Under the ACA, insurance providers now cannot deny you coverage or charge you higher rates simple because you have ankylosing spondylitis. (And also, just because you have a certain medical condition does not substantiate a grounded knowledge of healthcare policy). education on what YOU are taking a stance on--they can deny coverage when they don't approve procedures and medication. I was denied 3 different things that my doctor deemed necessary. My rates went up this year!
and yes, this did get to me and I replied--
you belittle me and my disease because you know nothing about it! So...let me inform YOU that I do have a brain that knows waaaayyy more than yours! And I'll say it again...come sit with me for 4 hours that I have an IV infusion every 4 weeks and let's talk. This IV helps me to LIVE. This medication could now be taken away. So, if you want to bring your healthy self and sit with me, I'll be glad to give YOU SOME KNOWLEDGE!
to his reply---
I'm not belittling your disease you twit. I simply asked you to provide some empirical justifications as why to why the ACA will cause all of these problems you keep ranting and raving about. Your brain might know more than me when it comes to your specific disease s, but it sure as hell does not when it comes to anything else. Please provide a grounded and warranted argument as to why this policy is problematic (this means tellings all of us WHY all of these bad things will happen, rather than making endless and unwarranted claims education yet again--my comment provides a little bit of knowledge on my disease and what I go through and I asked this person to gain a little knowledge about AS and I get called a "twit". Oh, if my girls ever behaved in such a way, I would be sooo embarrassed as a mom. Seems that he's quick to call a name but yet, really hasn't even given one bit of the so called knowledge he has about the thing he's fighting for. Because I had already stated what problems I've already faced and what I was worried about facing.
and my reply--
Name calling..nice. I asked one simple thing, knowledge of AS? So, see I actually know both, you on the other hand just know how to call folks names and insult. The cost of health care in the US is more expensive than anywhere else in the world and has dramatically increased in recent years. Medication costs have been a major factor. Using an anti-TNF agent costs over 30,000 a year in each patient (that's me). TNF's may be restricted to those like me with certain negative inflammatory markers--we're called sero-negative. Simply put-Our bloodwork shows no inflammation although our bodies are filled with it. Since the blood work comes back as negative they will in turn deny us medication. So far this year, I've been denied 3 things...3! This is all because of the changes. I just pray that I'm not denied my medication...again, no cure for me. I only can manage a disease that will be with me for the remainder of my life. So, yes, I've done my homework unlike you. See we need certain things that are questionable for us right now--you do not. You are healthy. I suggest education and not just on a healthcare plan.
So under the status quo (i.e. pre-ACA), if you and your husband were to lose your jobs (and the healthcare benefits they provide) and you were had to purchase health insurance on your own volition, do you think it is right for those insurance companies to deny you coverage because of your AS? Do you think you its right that they charge you more because you have this condition?
and at this point, I'm thinking...you can't fix stupid...he still doesn't even get the very thing he's talking about. See the thing is, if my hubby lost his job, we COULD have gotten insurance all along. People have been doing this for YEARS! I even did have to get coverage once because I was forced to bed-rest and couldn't work. What the ACA/Ocare did was to pass a law stating that EVERYONE MUST have it. No choice. Then they created a government insurance that folks supposedly can afford. The only times I've been denied are THIS year--because of the changes that have been taking place. I have been told by doctors that this will be worse.
Are there things that are good about ACA/Obamacare--So far the really only thing that I like is that you can stay on your parents insurance a bit longer. hmmm yup, that's it. So you say, what about pre-existing conditions and being covered and what about your co-pays now going towards your deductibles??? Well, being one that has a pre-existing condition and seeing that just because you have insurance doesn't mean you'll get the care you need, I'm not sure about this one. And as far as co-pays going towards deductibles, well, our deductible went waaayy up thanks to Ocare and really folks are you going to meet that deductible?
So, why blog about this...because IT DIDN'T FIX A THING! I've had insurance and now, this is already hurting me and my health.
Knowledge is key. Don't fight for something if you really don't know anything about how it will effect ALL! Do you know that those that this is supposed to be helping still won't be able to afford it. They will have a high deductible that they'll never reach.
It just dumbfounds (is that a word??) me that someone would belittle my disease. That a young person would be so rude. This is one of the problems facing those of us with AS (and invisible diseases)...education. What burns me the most is the lack of knowledge that comes from those who don't care to understand because they are healthy (and in this case disrespectful).
So this post is not to spark another political argument. It's not republican or democrat (which at this point all are wrong). It's truly education. See, my healthcare is now in question as to whether I'll get continued medication and things I need because of new regulations. I also ask that before you post a comment you learn just a couple of facts about ankylosing spondylitis. That you try and understand my fears and frustrations and not a healthcare policy. See doctors have to take your insurance and I'm thinking that doctors aren't going to be too hasty to accept the governments insurance. They actually still have a choice.
But if you're still reading and don't care to learn a few facts, here ya go--
There are more people with spondylitis than Lou Gehrigs disease, cystic fibrosis
and multiple sclerosis COMBINED!
2.7 million adults in the US have spondylitis.
You can gain a ton of knowledge by visiting www.spondylitis.org
See there's not a cure for me. Only managed care-- so my healthcare is very important. It's not just a policy or new law to me...it's my life!
AS has my body, but NOT me (or my sick brain..sarcasm).