Coming back from Headache on the Hill, my sleep schedule was completely out of wack. Between my crazy travel day on Sunday, my early morning and late flight on Tuesday, I was exhausted. It wasn't surprising that after all of the activity, I crashed and had a migraine last Wednesday. I was exhausted for the rest of the weekend, but overall I dealt with it.
On Monday, I got the Botox redone. It was more painful than it's been before, but I figured that I was just recovering from last week's migraine. I was very very wrong. I cam home, went to class, then immediately went to bed. I napped for most of the afternoon. Then, after trying to do some work, I realized that I was really in pain. I went back to my room, took my DHE and tried to sleep. Except that I was so nauseous and in so much pain that I was awake until 6:15 in the morning. I got about an hour and a half of sleep that night.
I thought about sleeping through my first class. My body does this thing where I either don't sleep or barely sleep, and then it resets and I feel better. It's not a great feeling; I'm exhausted, lethargic and just not a happy camper. But this reset is necessary. I do feel better after, and if it means not sleeping for a night to have a pain-free day the next day, I'll do it!
I didn't skip my first class on Tuesday. I stayed up for the entire day until I could fall asleep later at night. It helped to re-regulate my sleep cycle, but it also sucked so much. I realized, however, that sleep has always been a difficult thing for me after my diagnosis with migraines. When I was the most sick, I would sleep for 15 hours a day on average. I would sleep, eat, sleep more, eat again, and this cycle repeated. After a while, this problem of oversleeping became a problem on not sleeping at all. I experienced "painsomnia," a term well known in the spoonie community because it refers to the inability to sleep because of the pain. Even on the rare occasions that I didn't have pain, I would stop being able to sleep. My mind would keep on racing no matter what I did to quiet it down. I learned very quickly that when this happened, there was no way that I could sleep until my brain calmed down. It was like my body felt one way, extremely exhausted, but my brain wanted to run a marathon. Sometimes, this was kinda fun. One night in high school, there was a red moon. I had a couple lights on in my rooma round 4 am, and was just watching netflix trying to relax. My mom knocked on my door and came in because she couldn't sleep either. We ended up going outside and looking at the moon together.
The early morning can be a wonderfully peaceful time. It's very serene to be the only person up in your house or dorm. Of course, I'm not sleeping so that's a bit of a problem. Over the years, we've tried a bunch of different sleep therapies. I've tried different meds, a sleep study and a bunch of different exercises. While sleeping pills can help sometimes, they have to be taken at the perfect time, otherwise I will sleep through my morning, which has happened before. So how do I deal with this?
1. Don't stress.
Yeah, not sleeping is never good. But, stressing is just going to make it harder to fall asleep. Take some deep breaths, stretch a bit, and think about something that makes you happy.
2. Move around a bit.
Sometimes moving around a bit can be the best thing. Get up, stretch, go to the bathroom. If you can move to a different bed or a couch, try that! Sometimes a new environment can help you fall asleep much easier.
3. Have a plan.
When I can't sleep the first thing I do is move, breath and get comfortable. If I really can't sleep, I'll turn on my fairy lights. I also found that watching a mindless TV show or Netflix movie can really help calm me down and get my mind off of the pain and not sleeping. However, and this is SO important, but turn down your brightness/turn on night mode on your devices. That will save your eyes and also allow you to fall asleep much better than if you had full screen brightness. I know exactly what I need to do when I can't sleep, and I go through that routine until I can finally fall asleep. Take 5 minutes and think, what works for me when I can't sleep? What makes me feel better? What makes me feel worse?
Sometimes it feels like the world is falling down when you can't sleep. I know that for me, my emotions run wild. It's so hard not to get into a doomsday mentality. But just know that this is only one night. It will end, the day will come, and you can and will get the rest that you need. As always, have an amazing, migraine-free week!
I am still running off of the adrenaline of HOH 2017 earlier this week. Headache on the Hill is an annual lobbying event by Alliance for Headache Disorders Advocacy. This year was the first time that I participated, but it will hopefully be the first of many.
It started on Monday, with a briefing session. We went over our "ask" for this year, which was to garner support for a bill that changes the language of CARA, the Comprehensive Addiction and Recovery Act, to increase NIH funding for chronic pain research. The end goal is to make opioids obsolete and to get funding to find better alternatives for pain drugs. During the briefing session and the dinner after, I met so many amazing and inspiring patients and providers. For the first time in my life, I was surrounded by people who knew exactly what I was going through. I didn't have to explain why I was so tired, or stumbling over my words a little bit. I didn't have to pretend that I wasn't in pain. I could finally just be myself and talk about my pain and my experiences without fear of judgement, because everyone there knew exactly what it felt like to go through life with a chronic illness. Everyone at HOH was there because they are passionate about raising awareness and advocating for better research and treatment options. It was life-changing talking to so many people who just got it. I had conversations about food allergies, about how eating red meat actually makes me feel better and how I'm not the only one! There were no snide comments about what someone should or should not be doing or eating, just people's own experiences that they were sharing. For the first time since I got sick, I felt at home. I started this blog as a way to connect with other people, and it brought me to meet so many other amazing, inspiring people. It was an amazing feeling to know that everyone who was at HOH was there despite their illnesses, fighting through their pain and symptoms because we all wanted to raise our voices to affect change.
On Tuesday morning, we met at 8:15 at the Capitol Building to take a group picture. Over 100 people, representing 38 states were there. In one day, we had over 160 meetings. My day started when my amazing partner, Sara, and I went to the Library of Congress. I had never been there, but as the nerd that I am, I got lost in the grandeur and the history. Being inside the main reading room and walking through the alcoves made me realize that I am capable of chasing my dreams. I had made it to D.C. despite a horrible day traveling where everything that could've gone wrong did and got almost no sleep, but somehow, here I was, on Capitol Hill. The coolest part of my HOH experience was the fact that I felt like I was actually affecting change. I've always been good about explaining migraines and migraine facts. This year, however, the AHDA changed our "ask" to be about chronic pain, not just about migraines. Chronic pain is something that affects almost 30% of Americans, and is a huge economic drain. Below, I'm going to attach a copy of our leave-behind, the document that we left with the Representatives and Congressmen that we met. Some of the facts are really fascinating, and I hope that you also can share these facts with your friends and family as well.
Our meetings went very well. It was exhilarating to talk to people about a topic that was not only personal to me, but also is a bipartisan and widespread issue. As Sara and I talked to legislative aids and representatives, we heard stories about their own families being affected by chronic pain. We heard about their own experiences with chronic pain. It was so evident that chronic pain affects millions of people in America, yet there's still a major stigma to talking about it and treating it. In one of my meetings, we talked about the problem of opioids, and how they became the first line of defense for pain management. While opioids work for some people and allow them to function, they actually can cause rebound headaches and cause other side effects with long-term use. Furthermore, so many migraine and chronic pain patients have trouble seeking help at ERs because they are labeled as drug-seeking even though they are just trying to get relief from the pain because nothing else has worked. Why is it that Americans are so reliant on opioids? Well, it's because there are no other alternatives. Think about it for a second. If you have major pain in your body that ibuprofen and acetaminophen aren't helping with, what do you turn to next? What do you do when the pain gets so bad that you can't function? More often than not, it's opioids.
I was able to tell some of my stories about my own experiences with opioids. I was in Chicago my senior year and had a horrible migraine. I was taken to Northwestern Hospital where they refused to give me any pain medication because I had taken a triptan 3 hours before. I was at a pain level of 10, couldn't speak, couldn't open my eyes. My parents were arguing with the doctor because they needed to do something about it. I was given an IV saline drip and a bed for 6 hours, where I slept it off. We were charged $1,000. My experience with my blood clot was similar, where I was disregarded because of my age, and my pain was invalidated. I know that my experiences are extreme, but they are effective examples, especially when you only have a limited amount of time to convince someone to support your cause.
The entire day was completely draining. We spent most of our time running around the various buildings on Capitol Hill trying to figure out where our meetings were. It was the most that I had moved around in a while. By the end of the day I was mentally and physically drained. But it was so worth it. I met amazing people, had awesome meetings and participated in our political system. I completely crashed the next day and had a migraine. Again, it was so worth it. I am still buzzing from all of the adrenaline and happiness that came from those three days. I can't wait for next year's HOH. For the first time in a while, I felt like I was in exactly the right place, doing the right thing. Being in politics was my dream from when I was a little kid. I wanted to be President. This week, I began fulfilling my dreams. Two years ago, I never would have thought I would've been in DC advocating. A year ago, it was a goal to be achieved in 5 years. Today, I am looking into the future with hope knowing that I can actually do this. If you are interested in participating in next year's Headache on the Hill, please reach out to me if you want to talk about it, or visit AHDA's website to learn more!
As always, have an amazing, migraine-free week!
A year ago today, I was hospitalized for a blood clot (Deep Vein Thrombosis) in my right upper arm. I wrote about it a week later for my blog, and dealt with the emotions for months after. A year later, I'm still dealing with the emotions and problems associated with having a traumatic medical experience.
For the past two weeks, I've had increased anxiety, trouble sleeping, waking up in panic every morning and just been generally an emotional mess. I assumed that it was just because I had started a my sophomore spring semester in college and had taken on more responsibilities. But as I looked at the dates, I realized that this time last year, I was dealing with the physical consequences of my chronic illness. For the first time, I had physical manifestations of my illness— a side effect from one of my medications. However, because of my age and gender, I was told that my symptoms weren't real. I learned just how messed up our medical system was, when I had to convince a medical professional to run a diagnostic test on me because this was my second ER visit in 4 days. I've talked a lot about my experience, and if you want to read more about my the events of my hospital stay, read my post here.
Today, I'm going to be talking about the emotional effects of this incident. At the hospital, I was given a shot of Lovenox, a blood thinner, on my stomach. The photo attached to this post is what I had for a couple months after. The bruise was a physical reminder of the trauma that I had been through. It could not be scrubbed away, or hidden. When I was alone, looking in the mirror, I was consistently reminded of what my body went through. With the blood thinners that I was on for 6 months, I lost almost every medication that I used to combat my pain. A migraine attack would be so much worse, because the only pain drug that I could take was Tylenol, which is like putting a bandaid over a severed limb. While I dealt with the pain, it was the physical reminders that hurt the most. My bruise reminded me of the struggle that it took to obtain medical help. It was a constant reminder that this was not a cruel dream, but a reality. I had to deal with the fact that I got extremely lucky. If I had fallen, or gone sledding like I was planning to, the clot could have shifted and become a pulmonary embolism. Luckily, it didn't. But I had to deal with the emotional consequences of my own mortality and the fact that my body was a battlefield, and I have almost no control over it. I would look down at my hand, and notice that the area below my thumb, which had swollen and become blue because of the clot, was still puffy and blue. To this day, it is still a big bigger than the same part on my left hand. The veins are slightly more visible, the area just a little oddly shaped.
But the bruise went away. After a couple months, it faded. It turned different colors, growing fainter every day. While the bruise shrank, the emotions stayed. One of my doctors told me that I had been through a medical trauma. I hadn't thought about my experience that way, until then. It was traumatic. It wasn't a run of the mill health problem. There were real consequences at stake. Yet still, as per usual, my doctors had no idea why I got the clot when I did. I had been on the combination pill for three years, and had never had a problem with it. Nothing had changed in my lifestyle. I had no genetic pre-dispositions or autoimmune factors. Once again, I was a medical mystery.
The anxiety that surrounded my blood clot terrified me. I was on edge for months, worried that I would be sitting in class and have another horrible event happen to me. That was because I was in class when I started feeling the blood clot. I was too terrified to leave immediately, so I waited 15 minutes until the class was over before calling my parents and my doctors. About a month and a half after my blood clot, I was walking back to my dorm with my friends. It was cold outside, and when I got back to my room and started changing into my pajamas, I noticed the same red matrices covering my legs that had been on my arm and hand when I had the blood clot. I immediately freaked out. I went back to the hospital. I got an ultrasound to check for clots. It was just Raynaud's Phenomenon, but it was the first big flare that I had ever really had, save for some mild mottling on my arms and legs growing up.
To be completely honest, I'm still working through my emotions. Recovery is a process. While my body has healed, I am still dealing with the emotional repercussions of my clot. I've been dealing with doctors being dumbfounded and confused that I had a blood clot at 19. The constant question of "Do they know what caused it?" and the recounting of my experiences takes a toll on me. I've thought a lot about my future. I've thought about the fact that I can't take any products with estrogen in it, and that if I want to get pregnant, I'll be at higher risk for blood clots again. I've been told that I should be on baby aspirin for the rest of my life so I am at lesser risk for another clot. It's constantly in the back of my mind.
I thought that I should share this with all of you, even though it's very difficult for me. My initial post focused on what happened, and how I dealt with adversity. I didn't touch on the emotional aspect. It still hadn't hit me yet. The emotions didn't completely hit until my spring break last year, where I spent almost all of it sleeping and crying, dealing with everything that was going on. I hid the emotions I felt from a lot of people. I pretended that I was much stronger than I am when I told my story. I wanted to feel like I was stronger emotionally than I was feeling, and if I could convince other people that I was okay, somehow, I thought that I could convince myself too. It doesn't work like that. What does work is talking about my emotions, working with a therapist and reminding myself that I am still alive and here today. I have lived through so much already, but somehow, I'm still fighting. Without these experiences, I would not be doing the advocacy work that I am now. I wouldn't be me. Healing is a process. I'm very lucky to have an amazing support system around me. I am still in the process of healing, but the fact that I am able to share my emotions with all of you is proof that it is getting easier to deal with my blood clot and the physical and emotional trauma that I experienced.
As always, have an amazing, migraine-free week. I'm very excited for next week's post because that will be a recap of Headache on the Hill 2017!
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?
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
