A Hole in My Heart



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

Is Illness-splaining a thing?


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! 

2016: A Year in Review ft. My Migraines

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?

Winning the Sick Game

I'm in a period of relative stability right now, for the first time in about 5 years. I am still getting migraines, but it's easier to deal with them, and I do not get as incapacitated and debilitated as I did before. I am so thankful for that. For the first time in years,  I'm planning my future, applying to jobs and internship programs without having to worry if I won't be able to follow through. It's a relief, actually, to actually be able to think like this. I didn't have this luxury for the second half of my teenage years. I mostly just tried to make it through each week.

I'm still a part of many support groups online, and I write for my blog and The Mighty about my experiences with migraines. It's become helpful for me to write, because when I was really sick I basically lost my voice. I lost my ability to speak coherently, write, read, and focus. Now that I have regained my abilities to function, I am trying my best to speak about my experiences because I know how isolating and frustrating it can be to lose things that we all take for granted in life. 

Nowadays, I feel a pang of guilt when I sit down to write. I feel a bit hypocritical sometimes, because I am not as sick as I used to be. I think of all the people who are currently sick, and how I am so lucky to be in the place that I am right now. I get so caught up in comparing myself to other people and their illnesses that I forget that I, too, went through hell and back. Just because I am relatively healthier now than I was then does not mean that my experiences and my feelings are invalid. We need to stop comparing our illnesses in terms of how severe that they are, because chronic illness affects everyone differently. I've had people talk to me and say "Oh, I get migraines, but not as bad as you do." Why do we feel the need to qualify our experiences and apologize just because sometimes we meet others whose conditions are more severe or better than ours? There's no prize for being the sickest, no title or headline for "winning the sick game." No good can come out of negative comparisons. We already deal with enough shame surrounding our illnesses. All of our experiences with chronic illness matter, and we need to remind ourselves of that.

I share my stories about my hospital experiences and the hundreds of med trials that I've been on not to make other people feel bad for me, but to just share my story. Not to compare, not to analyze, just to get it out there. 

I often have to remind myself that for me, my illness was bad. When I was at my worst, I didn't leave my house, slept for 15 hours a day, could barely leave my bed, or even walk down the stairs. I lost everything about myself that I loved. I lost my extracurriculars, my academics, and all of the hopes and dreams that I had growing up. I thought that I would never be able to do anything meaningful with my life because I could barely function. I lost my identity. My chronic illness became my identity.

I've spent the last 2 years rebuilding myself from scratch. Who I am now is completely different from who I was before I got sick. But I went through a period where I had to deal with everything that I couldn't mentally deal with when I was sick. I've experienced the helplessness, the loss of identity and control, and the medical traumas. It's a lot to deal with, for anyone. For me, writing about my experiences were a way to think through my life, a way to cope with the cards I've been dealt in life. I feel very lucky that right now my life is a bit better medically than it was for most of this year, and exponentially better than the last 5 years of my life.

I am alive. That's how I often describe how I'm doing these days. I'm alive. I'm getting through everything, one step at a time.  My experiences are part of who I am, but they have also shaped me into the person that I am today. I've known what it's like to lose almost everything that's important to you. It's such a weird feeling knowing that the world is at my fingertips, for the first time in forever. There's still a part of me that's terrified that I'll lose everything again. But if I live like that, I will never be happy. I'll always be scared, terrified to dream because of how easily it may be taken away from me. One of my good friends has a saying: "if your dreams don't scare you, they aren't big enough." That dream could be mustering up the courage to talk frankly with your doctor about a treatment you've heard about, planning an outing, or for me, looking into summer public health internships. I'm just starting to realize that I can dream again. I hope that you all can too.

As always, have an amazing, migraine-free week!

Yes, I Have Been Moving Around, Thank You Very Much!

I really struggled with what I was going to write about this week. More often than not, I have a clear idea of what I want to say, and how I want to say it. Today, I am not so sure. As the semester is beginning to come to a close, my workload has begun to increase, and I am faced with the ever present struggle of trying to do work to the best of my ability while balancing my health and happiness.

It's the small things that help me get through it - doing my laundry, cleaning my room, get readings and essays done, and knocking things off of my to-do list while also getting sleep and eating well. But all too often I am overwhelmed by the feeling that no matter my efforts, I will be unable to complete my tasks and do everything that I want to do. This is something that is not unknown to spoonies, as our days are often ruled by how much stress our bodies can take in a day.

Someone recently told me that I looked good physically, like I had been working out or moving. I laughed and said "Thank you, I have in fact been moving!" Yet looking back, on the past couple weeks, I have moved a lot. I have walked up the stairs to get to my room, sometimes gripping onto the railing for much-needed support. I've had to take the stairs to class when the elevator was broken, knowing that there would be a small chance that I may pass out at the top of the fourth flight. I've also danced, and cleaned and stretched. The problem with this isn't that I am unable to move or use my body, it's the fact that I never know when or where my body will fail me. The unrelenting fatigue and pain have become a part of my daily routine, as much as brushing my teeth or getting dressed is. My body is at war with itself, and I am stuck in the trenches.

Breathing is something that is natural to humans. We breath in and out, taking in oxygen and expelling carbon dioxide. It is a simple reaction. I breathe to push through pain, through fatigue, through emotions that I have no control over. Sometimes, it is the only thing that I can control in my life. It's something that is so simple, so easy for most people to do. By doing breathing exercises, I am able to help center my body. When I wake up, when I go to bed, and any other time during the day: In, two, three, four. Out, two, three, four. Repeat.

This small semblance of control keeps me going, in a life where I do not control anything. My body is not my own. As much as I try to fight it, my body remains in the control of my illness. However, I will never give up hope. I may be sick for the rest of my life, but I will always fight. It is in my nature to be a fighter. I have always been headstrong and confident, always willing to question authority and the "normal way" of doing things.  I don't think anything will change that, and that's a good thing.

As always, have an amazing migraine-free week!
Subscribe to: Posts (Atom)