Let's Talk about the Affordable Care Act

1:32 PM chronicmigraineellie 0 Comments


In the past couple weeks, I've done a lot of reflecting. I've been thinking about healthcare in America, and how legislators have been approaching healthcare. When many legislators think about healthcare, it falls into partisan territory. The Republicans did x. The Democrats did y. Each party feels the need to rescind and de-legitimize what the previous party did. Currently, this is playing out in the repeal of the Affordable Care Act (commonly known as Obamacare).

While the ACA is not perfect, it has allowed millions of Americans access to healthcare at lesser costs. As of 2015, 16.4 million uninsured people gained health coverage (HHS.gov). An estimated 55 million women are "benefitting from preventative services coverage with no out of pocket costs and health insurers can no longer discriminate based on gender either (HHS.gov). Furthermore, as a result of Medicaid expansion, healthcare costs were reduced by an estimated $7.4 billion in 2014. There is higher quality coverage, less avoidable hospital readmissions and improved patient safety. Since the ACA was passed in 2010, more than 11 million people saved an average of $2,100 a person on prescription drugs (CNN).
Why would we get rid of this?

With the repeal of the ACA, millions of people would lose their insurance. Not only that, but if the pre-existing protections were to be repealed then 133 million people, or 51% of non-elderly Americans would lose their coverage. If that doesn't worry you, let me tell you a bit more. Some of the most common pre-existing conditions are: high blood pressure (46 million people), behavioral health disorders (45 million people), asthma or chronic lung disease (34 million people), heart conditions (16 million people), diabetes (13 million people), and cancer (11 million people) (HHS.gov) And yes, migraines are also on the list of pre-existing conditions. as well as epilepsy and many more. In his town hall, Paul Ryan said that only 8% of all Americans under 65 have pre-existing conditions (CNN). I have no idea where he got that statistic, but I do know that there is such an overwhelming number of Americans with pre-existing conditions that there is no way that statistic could be correct.

Knowing this information, how can any legislator take away these protections? It's because in the United States, we are seen as faceless and nameless when governmental decisions are being made. We are just part of a statistic. The consequences don't feel real, they are just hypothetical. But they're not. There are real consequences to repealing the ACA, and they will affect everyone. No one will be safe. If you get sick, there is a good chance that you will have trouble finding insurance to cover the cost of your treatment.

So now that I've just told you all of these facts, you must be thinking, what can I do? You can call your representatives and senators and tell them that you oppose the repeal of the ACA, or if you have problems with it, tell them the specific law that you do not like. The best way to get the best healthcare initiative in America is to make our voices heard. Email, write, protest, do whatever you feel that you need to do.

I am starting a project to make sure that legislators and Americans know that pre-existing conditions are real and very prevalent. The best way to influence change is to stop being faceless and nameless and show that we do exist. We have lives, families, dreams, hopes and passions. We are real, and we should have a say in what happens to healthcare in America. I hope to start this project very soon, but I need to learn more about other people's experiences.

 If you have a story about your pre-existing condition, please fill out this form. Don't hesitate to contact me with questions and if you would like to remain anonymous you can. I will continue to fight for increased access to healthcare, will you?


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A Hole in My Heart

7:20 PM chronicmigraineellie 2 Comments



Last June I was told that I had a hole in my heart. A Patent Formulae Ovale is a hole in the heart that did not close after birth and is found in approximately 25% of the people. It's actually pretty normal. So normal that there are minimally invasive surgeries to repair it. Upon hearing this new, I became excited. There was a study done at UCLA that showed some promise in patients who had PFOs and migraines if the PFO was closed. Normally, people don't get excited when they find out that they have a congenital heart disease. I was elated. I couldn't believe that there was light at the end of the tunnel, that there was a diagnosis, a reason, a solution to my migraines that somehow made it all worth it. 5 weeks later, I went to go see my cardiologist and get more tests done. I had already planned out time if surgery and recovery if that was needed, so I could go back to college and start my sophomore year in the fall as planned.

I got so caught up in the excitement that I didn't stop to think about the consequences. It was like how I felt when I got the results of my CAT scan in the ER for my blood clot; I was relieved. I had something that was fixable. There was no messing around with possible meds and diagnostic tests, there were rules and procedures to follow. I've always been a rules and procedures kind of girl. I like structure. Well, I did, until my life became completely structure-less.

I spent almost 2 months, basically my entire summer of 2016, thinking that I had a congenital heart disease that could be fixed with surgery and with that surgery came a possibility of reduced migraine frequency. But I don't. It was a false positive. It took me until now to be able to talk about it on my blog. I felt crushed. I was so close to finding a reason for my migraines, I got caught up in the feeling that I had something that was actually considered pretty normal. I think I was scared to share it with all of you because once I shared it, it became a reality. I guess I was relieved, my heart was completely fine structurally and functionally. But there was some part of me that was upset that it was. When you're a medical mystery, sometimes it's nice to feel normal, to know that doctors see this all the time. I desperately wanted to feel like I was medically normal, and not like I was just trying to solve the puzzle that is my symptoms.

Last fall I got strep throat for the first time. When I found out and was put on antibiotics, my mom told me that she was relieved that I was "normal" sick. "Normal" sick as in not having to make plans to check into a hospital if the migraine doesn't break, or a blot clot pops up out of nowhere, or dealing with bronchial spasms. It's a relief to get a cold, because I can function with a cold. It's manageable, normal, fixable.

I'm sitting at home right now, writing this at 3 o'clock in the morning because I can't sleep. There's a major rainstorm right now, and the pressure changes kept me up last night too. But this is my normal. I have a routine, a procedure to help me fall back asleep, hopefully by 5 am, maybe 6. There's just too much that I cannot control. That's why I was relieved when I was told that I had a hole in my heart. Not because I was scared, but because it was something that could be fixed, controlled, and monitored. I don't think that much could scare me now. Honestly, the scariest thing for me is actually living my life. It's having opportunities and creating memories and taking risks. It's living outside of my bubble that I know is safe. Somehow, I keep putting one foot in front of the other and living the best that I can. Maybe it's my amazing friends who encourage me to live as much as I can but also care about my limits and boundaries. Or, it could also be my family, who believe in me possibly more than I believe in myself. But most of all, it's emotionally filling that hole that I thought was in my heart for two months, and realizing that if I kept blindly searching for a cause or a reason I would never be able to live my life. I may never know what causes my migraines. That doesn't mean I'm going to stop asking questions and educating myself. What it means is that I will no longer allow my happiness to rest upon the need to find a cause. It's like trying to answer the question of the chicken and the egg, what came first? There's no reason for me to place so much importance on a diagnosis. It may be years until I know what the true cause is.

Today is a difficult day for many of us. Actually, it's a difficult day for all of us. Many of us are worried about losing insurance, disability compensation and basic rights. Regardless of your personal feelings about our new president, it is important to speak up about our experiences. I am going to be doing a couple projects that compile experiences from all different types of people with chronic illnesses, from ER visits to experiences with birth control and other stories. The only way that we can combat the loss of insurance and care is by sharing our stories. So let's share them, and make sure that our voices are heard. If you are interested in being interviewed or have a story to share please contact me through my Facebook page at https://www.facebook.com/chronicmigraineellie/ or send me an email at e.donnerklein@icloud.com.

As always, have an amazing, migraine-free week.
Love,
Ellie

2 comments:

Is Illness-splaining a thing?

12:19 AM chronicmigraineellie 3 Comments


We've all heard about mansplaining. According to Merriam-Webster, it is when "a man talks condescendingly to someone (especially a woman) about something he has incomplete knowledge of, with the mistaken assumption that he knows more about it than the person he's talking to does."

After a couple rough experiences this week, I started wondering if the concept of mansplaining could be linked to illnesses and the constant barrage of "have you tried this?" and "my friend did this and her illness went away, why don't you just do that?" While many of these comments are made with good intentions, they are tiring and often inaccurate. While I'm sure that some of these lifestyle changes truly did work for some people, many people assume that because you're sick, you aren't doing everything in your power to try and fix that. "Illness-splaining" stems from the anxiety that other people feel about the unknown parts of chronic illness and the helplessness that they feel. I'm not saying that you should never listen to anyone, but it's important to differentiate between your own anxieties and the projection of someone else's anxieties onto you and your chronic illness. 

For anyone who's chronically ill, dealing with these comments is a major part of our lives. Sometimes, it takes all of my energy just to smile and politely explain that my condition is much more complicated than they realize. I can't just take a pill or exercise my migraines away; I have a neurological illness. I can take steps to alleviate my pain, reduce inflammation in my body and avoid food triggers, but unfortunately, I'm stuck with this. My heart sinks when I have to explain that yes, I've seen doctors and specialists, I've tried almost every medicine out there, and yes, I have tried many alternative treatment options. The question, "Do they know what causes your migraines?" is like a knife going into my heart. Most of the time I just smile and say, "I wish they knew." I really do wish that they did know. I'd love not to have to be bounced from specialist to specialist, going through test after test just to have a doctor look at me and basically throw their hands up in the air because they have no idea what is wrong with me. 

I know my medical history backwards and forwards, I've learned about different migraine treatments, protocols and drugs, I have educated myself as much as I can to try and find some sort of answer. Yet nothing hurts more than someone assuming that I haven't done everything that I can to get better. I am not an expert by any means, but I am currently living with a chronic, invisible illness that completely rules my life despite my best efforts. To have someone who is completely healthy tell me that my pain is not validated, is not real, or that I am not doing all that I can is just rude. This week, someone actually told me that if I just ate at different restaurants, my food allergies would miraculously clear up. When I read this, I started crying. This person assumed that I was just faking my allergies, that I just wanted special treatment. She doesn't know about the days that I've been unable to eat because I got cross-contaminated, or the hours of nausea that I experience, or the painful migraines that come less than 5 minutes after eating something containing a trigger. She assumed that I was not careful about where I eat. She doesn't know that I have learned to double and triple check when I eat out, sometimes speaking directly to chefs to make sure that what I am eating is safe. But that's just the thing. So many people just assume, they don't think to ask about what is actually true, or even have a conversation to talk about stigmas and assumptions. 

That's one of the dangers of having a chronic illness. There are so many stigmatized misconceptions that are still so prevalent. That's one of the reasons that I talk to candidly about my illness. I've heard it all. My favorite is that all migraines are caused by stress. While it is true that some (emphasis on some) migraines are triggered by stress, it is hardly the main cause for many migraineurs. My response to the millions (literally) of times that I've heard that is to laugh and say, "oh, I WISH it was that easy!" 

I've been thinking a lot about my life this week, and about how just a couple years ago, I was ashamed to talk about my illness. I was anxious that no one would understand, that the stigmas and misconceptions would cause people to view me differently. I used to feel helpless or get upset when someone would suggest something to me without any research or data to back it up. I get "illness-splained" all the time, but I've learned how to take everything with a grain of salt. That being said, it's okay to try things that people suggest to you. It's your body, and who knows, it could help! But it has to be your decision, and you should never feel like you're being shamed into doing something by someone who does not have any prior knowledge on your condition and hasn't done any research. 

Living with a chronic illness is difficult. There are so many unknowns, so many variables that could fall out of place at any given time. You should never have to justify your pain, your experiences, or your emotions to anyone. You are the only person in your body, therefore you know what you are feeling. No one can tell you what pain you feel, or how you're feeling emotionally.  

Now that I've just written an entire post based on a word that I made up, what do you think? Is "illness-splaining" something that you've experienced? As always, have an amazing, migraine-free week! 

3 comments:

2016: A Year in Review ft. My Migraines

4:06 PM chronicmigraineellie 2 Comments

Well, December did not end how I wanted it to. 2016 did not end how I wanted it to. I was cruelly reminded how quickly my life could disappear and everything that I had worked so hard for could be postponed almost indefinitely. I was taking my Chem final, the Tuesday of second week of December, when some maintenance in the building created a high-pitched sound. After about a minute and a half of it going off non-stop, I asked my professor if I could leave the room. I went to her office across the hall. 20 minutes later, my entire class was moved to another classroom because the noise was so disruptive. But for me, the damage was already done. After about 20 minutes in the new room, almost an hour into the test, I stopped being able to function. I fought tears as words became blurry, the lines moving, me head spinning. I still had two more questions on the test, one of which was worth 20 points. I asked to speak to my professor outside. I started crying because of the pain. I could barely explain that I couldn't do it, that I knew that I had studied well and if conditions were perfect, I would've aced this test. But it wasn't perfect. It was humiliating and scary. My professor was absolutely amazing. We found a way to make it work and luckily I didn't bomb my test at all, because I finished most of it before the pain started.

My other finals were not so lucky. For 5 days after this, I lost the ability to read, write and focus...again. Trying to read made me dizzy, the world would start spinning and I would have to lay down almost immediately. I couldn't do anything other than sit in my room. I couldn't focus on anything. It was like I was in high school again, isolated and terrified that I would never be able to function again. I had to give myself two shots, one of Sumatriptan, an auto-injector of Imitrex that scares the living shit out of me when I have to do it, and IM DHE, which finally broke my migraine.

A day after my migraine broke, I flew home. I had my brother and my parents help me write emails to my professors to get extensions. I had three incompletes in my four classes. I felt like I had lost everything. It's taken me weeks to get back to almost 90% functioning again. Only now, almost a month later, am I starting to feel like myself again. I can write more, read, focus again.

But for two weeks, I barely left the house. I was reminded that I have absolutely no control over my illness. It only took 2 minutes of a high pitched sound to completely destroy my life and all of the carefully laid out plans that I had. I'm doing a lot better now. The pressure changes still make me nauseous, and I still have to lay down and sleep after higher intensity days, but I'm managing, and I'm doing okay. And that's okay. I don't need to be perfect, I don't need to do everything.

2016 was a hellish year for me. There's even parts that I'm not ready to share with all of you yet, because I'm still working out my emotions about them. What I've learned, though, is that while I talk publicly about my illness and disability, I am scared to show you how I am when things get rough. I am still scared to show my family and friends just how much pain I'm in. I would rather stay in my room alone and hide from the outside world than show myself un-edited to the world. Makeup is my cover, it allows me to put forth the image that I want the world to see. Looking through my Instagram, there are no picture of me mid-migraine, or post-migraine. I am too scared to show that. I would much rather have people see me in a positive light and read about my experiences than actually see me going through it. I don't know if I will ever do that, but acknowledging it is the first step to changing it. But I'm okay with that. I realized that I want people to see all of me, my achievements, my failures, my troubles, because my migraines are a part of me, not the total sum.

In February, I will be participating in Headache on the Hill 2017, lobbying for more funds for Migraine and Headache Disorder research. It is an honor to be participating, and never in my wildest dreams did I think that I would be doing anything like this. I am so grateful to all of you for believing in me, for reading my blog and for the amazing comments of support that you leave when I am going through rough patches. You all motivate me so much to continue raising awareness. I would not be where I am right now without your support. 2017 is a year of new beginnings. There will be ups and downs, but right now, it is a blank slate. What does 2017 hold for you?

2 comments: