Welcoming in a New Day

Another year gone, already?! I’ve read and heard so many people saying that time is flying by or posting long facebook posts about all that was accomplished or what they learned in 2017 and what their goals are for the new year. And yes, sure, I could do the same, but in all honestly, my illnesses have changed my perspective on the passage of time and watching one year pass and another begin just isn’t as huge of a celebration anymore.

My life has changed drastically over the last 5-6 years and I’ve grown and learned so much, but I’ve also lost many parts of myself and so many aspects of my life that used to create that excitement and significance of a year passing.

I’ve been out of school full time for three years now, and by leaving school I also left my friends, my social life, and my education behind. At the time, I had no idea I was leaving for an indefinite amount of time, and now I’m watching my friends graduate, some of them have even gotten engaged (s/o to my first year hall-mates who just got engaged to their high school sweethearts <3), and many of my high school classmates have even settled down and started families.

Before leaving school and having my illness progress into an extremely severe case, I had so many goals and plans for my life, but being dependent on feeding tubes and a hickman line (a long term IV in my chest) for nutrition and hydration and being dependent on my parents for everything from setting up feeds and sorting my daily meds to driving me to appointments and staying endless nights in the hospital has really changed things for me.

I no longer look at the long term or “big picture,” but instead focus on getting through each day. Some days I just focus on getting through each hour, trying to survive the time between each dose of nausea or pain medication. My every day life can get monotonous at times when I am home bound or bed bound, sleeping more than I’m awake, awake only to take medications, go to the bathroom, start new feeds, etc. The days blur together when you do the same things every day and have little to look forward to. Although many of my days are full of pain and discomfort, its always possible to find something to laugh at, smile over, or appreciate.

Instead of looking back on what has gone on in the last year or thinking of what I can accomplish in a new year, I continue to focus on each day and every small beauty and accomplishment that occur in that day. Although I don’t have any huge plans for my future, I do have dreams and goals, and I’ve gotten really good at appreciating the small things in life, if you take time to look, there’s something positive in every day.

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A Response to The AHCA From One of The Millions Left Behind

Yesterday the House Republicans approved the American Health Care Act—their replacement for the Affordable Care Act. Although it still needs to pass through the Senate, my heart, along with the hearts of many other Americans, was left very heavy after this vote.

Although Donald Trump claimed that his bill would provide health care for everyone while also leading to tax cuts and a better budget for our country, if you look deeper into the bill you will see that this is a blatant lie. The AHCA claims that it “maintains protections for people with preexisting conditions, with some important exceptions.” It then asks you to “see waivers below.”

The waiver section of the bill allows for state-level full repeals of Obamacare. Each state has the ability to apply for waivers to opt out of regulations and protections from the ACA. There are three main waivers for each state:

  1. Charge older people more than five times what they charge young people for the same policy
  2. Eliminate required coverage, or essential health benefits, including maternity care, mental health, and prescription medications
  3. Charge more for or deny coverage to people who have preexisting health conditions including but not limited to cancer, diabetes, and domestic abuse

Okay… so #1… aren’t we supposed to be moving away from inequality in America? Clearly this ageist fine print is harmful towards our senior citizens when in reality we should be taking care of our elderly, not robbing them.

#2…. Our maternity care is already extremely lacking compared to other industrialized nations, so why are we moving further backwards? We should be extending our maternity care and offering longer paid leave for both parents after childbirth, not taking maternity care away. As for planned parenthood, only 3% of their funds go towards abortion, so let’s not even talk about how ridiculous it is to defund them when they provide extremely important care to high risk women all over the country.

Our mental health system is already WAY too hard to work with. Individuals with severe mental health struggles are living on the streets, struggling to find homes and jobs, and trying their hardest every day just to get through the day. If someone with severe bipolar, depression, schizophrenia, paranoia, or a personality disorder is left without a support system and doesn’t have a treatment plan, it can be extremely difficult for them to succeed or even survive in this world. Why would we make it harder for them to get adequate treatment? Mental health is not at the fault of the individual, and we should not treat them like it is.

As far as prescription medications go, I can tell you I max out my insurance in a month or two max every year. I’m on 20+ prescription medications if you include all of my oral medications, tube medications, IV medications, infusions, and tube feeds. If I lose my health insurance, I won’t be able to afford these treatments and I don’t even want to think about what happens then.

#3.. okay this is where I really get heated, and considering I’ve already been typing up a storm, you’d better prepare yourself.

Let’s start with the quote from our good GOP friend, Congressman Brooks, “My understanding is that the new proposal will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool. That helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done good thing to keep they’re bodies healthy. And right now, those are the people, who’ve done things the right way, that are seeing their costs skyrocketing.”

So basically he is saying that “good people,” aka healthy people, should pay less because they have “lived better lives.” Well, I am a sick person. I am a sick person who is likely going to be sick for a very long time. However, I am a good person despite being ill. Before getting sick, I was a good student, I volunteered regularly, I ate healthy and went gym all the time, I was an athlete, I got into a great college, I had friends. Now I cook for my family, I take care of myself the best that I can, I still volunteer as I am able, I write and paint and have a positive attitude about my situation. So, what makes me less of a person? I’m not trying to brag about myself, I’m just making a point. I know not all GOP congressmen and legislators are quite this dumb, but people with illnesses do not deserve to be treated with disrespect.

But chronic illnesses like mine aren’t the only ones that this bill considers “pre existing” conditions. Yes, my illnesses are pre-existing, but so are cancer, depression, anxiety, acne, and over 50 other conditions. What’s even more shocking is that rape and domestic abuse are considered pre existing conditions! Uhm.. excuse me? In what world is it fair to make the victim of a sexual assault pay more for health insurance than her attacker pays? What about the husbands who abuse their wives? What affect will these rules have on the victims coming forward? Will attackers pay more, too? Where is the equality in that?

What makes my life worth less? The fact that I have a chronic illness? Is the life of someone with mental illness worth denying them a psychiatrist? What if it costs them their life? Is a rape victim’s life worth less than that of their rapist? A domestic abuse victim less than their spouse? Is a special needs child’s life worth less than their sibling or classmate? Where does it end? Where does this new America stop choosing money over lives?