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?

Adventures of a Tubie

Have you ever had to make a decision between what may be smart or practical vs. what would make you happy or what would be fun? People often make these choices in small ways every day when it comes to choices about what’s for dinner, whether to study or go out with friends, what to wear, etc. One of the biggest lessons I have learned in my journey with chronic illnesses is that life is short and sometimes it’s worth a little bit of impracticality if you’re just in need of some fun.

I spend a lot of time taking care of myself and majority of the time my health comes first. I have a lot of doctors appointments and I spend anywhere from 16-20 hours a day hooked up to my IV pole on various tubes for infusions and feeds. I take countless daily and as needed medications and require a great deal of rest due to chronic fatigue and pain. That said, after a rough recent admission—which you can read about in a recent article here—my parents and I decided that I am in need of some fun.

I have some fabulous friends who live with similar health conditions that I do, but most of them live hours, states, and even countries away! Taylor is one of my best friends and she lives in Texas; she has two or three of the same conditions I have and has a feeding tube! Taylor came to visit me and our other friend, Macy, last summer and we had an amazing time! We have had two other trips planned but both fell through due to our health at the time.

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You’d never know each of us have tubes, central lines, and a handful of chronic illnesses! This time together was so precious.

Well, even though my health is not currently considered “good” or even stable, I’m going to go visit Taylor! I will fly to see her and spend a week with her in Texas! Considering most days I hardly leave my house right now, this is a huge undertaking for me, but it will be so good for my spirit. And although we are both in our early/mid twenties, Taylor and I are both quite sick and have similar restrictions so we will be good company for one another 🙂

I am so excited for this trip. I do have some anxiety about flying and traveling by myself and I know that I will need a long time to recover when I get home, but it is totally worth it. Although I can’t escape my body and my illnesses, I can take a small break from all of the stress that comes along with appointments, phone calls, insurance, etc. (or at least I can try!).

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Sometimes you just gotta pretend you’re a normal 21/24 year old and duck face it out 🙂

This trip does not mean I’m feeling better or I’m recovering, it just means I’m doing something that is fun and something that will make me happy. I’m taking time to be young and savor this part of my life as much as I can. We don’t have time to waste, so even if all Taylor and I do is watch movies and talk and nap, it is so worth it. Even if it takes me two months of sleeping when I get home, it is so worth it.

Don’t forget to choose the option that will make you happy sometimes, even if it may not be practical.

Thanks for reading.

xoxo

Why I Sometimes Choose not to Listen to my Body

When you’re sick for a long period of time, you become very in tune with your body. I’ve learned how to listen to its cues and I can often tell what kind of day I’m going to have or when certain symptoms are escalating and I can then plan my day accordingly. However, I’ve also learned that sometimes it’s okay to hear my body out and then choose not to listen to it.

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A recent outing to visit a friend who has alpacas! One of my favorite animals 🙂

Right now I’m at a point in my illness where I don’t get many great days. I have days that are less symptomatic, sure. But every day I’m experiencing pain, severe nausea, migraines, and fatigue. I spend most of my time in bed, sleeping all night and much of the day. I am often pretty uncomfortable when I am up and moving around.

That said, when I get the opportunity to do something fun, sometimes I have to tell my body that I don’t care what it thinks, I’m just going to do it. For instance, my dad got 2 free tickets to the UVA basketball game this weekend and my little sister, who is a huge fan, couldn’t go. Obviously, I love UVA basketball, but events like that aren’t easy for me to attend. This is something that my dad and I used to love to do together and I haven’t been to a game since I was in school there two years ago, so I decided to fight my body and take advantage of the opportunity.

I’ve been in a flare up all week because it was an antibiotic treatment week and those always take a lot out of me. Because I’m low energy and high needs, preparation for me to go on an outing like this takes a lot more time and planning than it does for most people. I showered the night before because I always have to nap after showers—they exhaust me and always leave me with a migraine. When I woke up on Saturday morning (for the first time) I did a bag of IV fluids and did my morning meds a few hours earlier than normal because they make me sick to my stomach. I took three different nausea meds by 8:00am and made the final decision that I was going to go with Dad to the game. I stayed in bed finishing my tube feeds and trying to rest and control my pain/nausea until about 11am—the game was at 2pm.

As I said, for me, this game is a huge outing. So, I had to take enough nausea medication to last me at least 6 hours, pain medication, migraine meds, and all of the other supplies that go along with my tube and port. I also take sunglasses and a mask for the car because of my light sensitivity, a heating pad, lidocaine patches on my back and my stomach, and lots of germ-x! I’m nearly 21 years old, but packing me up for a day trip is comparable to packing up a baby’s diaper bag, just swap diapers and toys for medical paraphernalia.

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Yay! We made it!

I love getting out and doing things that I loved doing before I got sick, but as you can see, it is quite a process now. Going to this game will likely land me in bed for days recovering from using so much energy and being so over stimulated, but being there reminded me how much love I have for UVA and getting out and having quality time with my dad that wasn’t a road trip to a doctors appointment was such a gift. I’m blessed to have a family that works hard to help me be able to have fun outings like this every now and then.

Some days, chronic illnesses just don’t get to win.

A Balance of Hope

Did you ever write a letter to Santa asking for a puppy or maybe for the new xbox360? And maybe Santa brought you a stuffed animal puppy or FurReal friend instead? Not what we meant, Santa. And maybe instead of the new Xbox he brought a new game for the totally lame game cube you’ve had for years? Or maybe something completely random like ANOTHER box of Legos? I mean, come on Santa, that is so elementary school.

Well, we’ve all gotten our hopes up for things that haven’t happened before. We recover eventually, but it can be pretty disappointing! I’ve learned that with my chronic illnesses, I can’t get my hopes up every time I go see a new doctor or try a new medication. Some people have trouble understanding this, but for me, there’s a big difference between having hope and getting my hopes up. The latter of the two is the one that is much more dangerous for me.

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Passing time in the doctor’s office by snapchatting! Smile and designer bags under my eyes 🙂

 

There are a couple of reasons for this, the first being that I simply see too many new doctors, each of whom comes with their own plan for therapies/treatments/medications, and they don’t all work. The truth is, most of them don’t work! Chronic illnesses are very complex, and there aren’t very many approved treatments for them, so we (the doctors and patients) end up putting together treatments of our own and it is a lot of trial and error. Our doctors work really hard for us, and I am so grateful for that! Sadly, a lot of these meds just aren’t made specifically for our conditions and so they often don’t work out. Sometimes the side effects are too much, insurance doesn’t always approve treatments, and other times the medication just doesn’t help. Either way, if I thought each medication were going to be the fix-all, I would be incredibly disappointed much too often.

The second reason I try not to get my hopes up is that my illnesses are chronic. This means they likely won’t completely go away. I hope every day that we find a treatment plan that lets me live a much more comfortable and high functioning lifestyle, but I also know (at this point) there is no cure for my illnesses, so I’m always at risk for my symptoms coming back. This can be a daunting thought, but I work with some great doctors and have a lot of hope that eventually we will figure out a way to help me get back on my feet (literally and figuratively some days!J) and having more good days than bad.

I guess you could say that not getting my hopes up is a sort of safety net. In order to live my life with a positive attitude and to hold onto hope for a more “normal” life, I can’t get my hopes up about each of the individual treatments my doctors give me. However, as one doctor liked to remind me, attitude does make a difference, so it’s important to have hope. This is why I make a point to stay positive and have hope that we will find the right treatment eventually! One of these days a doctor is going to choose the right treatment, and when he does, I am going to be like a kid on Christmas morning that finally did get a puppy!

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Here’s a puppy visual for you 🙂 He is a great therapy and gives me hope!

Because I don’t get my hopes up every time and therefore don’t get let down as easily, I am able to keep hoping every day for a better tomorrow. I hope for days with less pain. I hope for days with move activity and less napping. (Yes, I want to spend less time in bed!) I hope for times where I can eat more and expand my “safe foods.” I am hopeful that I will go back to school and get my degree(s). I am hopeful for a future that holds a more “normal” lifestyle and one that that will include fewer doctors’ appointments and more time with friends, a job that I love, and health for my family and for myself. And I hope that one day there is a cure for gastroparesis, dysautonomia, EDS, and all of the other chronic illnesses that affect me and so many other people everyday.

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Laughter, loved ones, and pretty dresses

There’s a difference between getting my hopes up and being hopeful, and I have found the balance that works for me. Albert Einstein once said, “Learn from yesterday, live for today, hope for tomorrow.” I’ve learned that living one day at a time is the way to go, but hoping for a better tomorrow never hurts.