It Happened to Me: Blood Clots and Birth Control

When I started oral contraceptives three years ago to manage my menstrual migraines, I knew that there was a small chance that because I had migraines with aura I could possibly get a blood clot. I figured that the benefit was worth the risk, as one in 3,000 women per year who take birth control pills will develop a blood clot (stoptheclot.org). Little did I know, however, that I would be the one woman out of 3,000 who developed a clot.
Last Thursday, February 4th, I was sitting in class when I noticed that I was having localized pain in my upper right arm. I looked down, and my hand was starting to swell and the veins in my hand were very blue and I could see them very clearly. I immediately called my parents, and after a while I decided to go to the emergency room. I am going to put in a disclaimer here that I am in no way going after the hospital that treated me, but instead am telling you all my experience in order for you or your friends and family to get the best care that you need.
Thursday was my first ER visit for my suspected blood clot. I waited for two hours before I was seen by the doctor, and by then the pain had moved from my arm to my hand and started swelling around my thumb. The pain was nothing like I had ever felt before. It felt like someone had put icy hot inside of my hard, with a throbbing, sharp pain mixed with numbness. I explained to the doctor that I was at risk for blood clots, the medications that I was on, and my chronic condition. He proceeded to dismiss me, telling me that I had slept on my arm wrong but he would do an ultrasound to "make me feel better." An hour and a half later when the ultrasound tech came, the swelling in my hand had gone down. I asked to see the doctor, and another forty-five minutes later he came in and told me that I had peripheral neuropathy (damage to my peripheral nerves which is quite rare is otherwise healthy 19 year old girls) and to go home. No blood tests or other tests were done.
Fast forward through the weekend, where my hand was still swollen and blue, I started feeling the pain again this time in my hand on Sunday night at about 12:30 am. I called an ambulance and was quickly taken to the ER. Due to the visit on Thursday, the ER doctor initially told me that I would have to wait 5 hours for the ultrasound tech to come in and that I was free to go. This is where the important part of my story comes in. I knew that something was wrong, my hand shouldn't be swelling and turning blue, and I wanted them to do something about it instead of dismissing me as a hysterical young girl. I was actually quite calm during the pain, and it helped that one of my good friends was in the ER with me. I was not leaving until they figured out what was wrong with me.
After getting an x-ray, I consulted another doctor who then convinced the ER doctor to do a CT Angiogram with dye, which would actually show more of the vasculature than the ultrasound would. After the scan, they started taking labs. About an hour and a half later, the ER doctor came into my room to give me my results. She turned to me and said, "I'm really impressed at how you advocated for yourself. You were right, you have a blood clot in your brachial vein on your upper right extremity." I had deep vein thrombosis in my arm, a small clot which showed up on the CT scan.
At this point, I started crying. I was so relieved to hear that my pain was validated, that I was going to be okay, and that someone had actually listened to me and found out what was wrong.
They admitted me, gave me a shot of Lovenox, a blood thinner (which made an awesome purple bruise on my stomach) and moved me to observation. I spent the night and most of the day in observation. I had two amazing family practice doctors and a hematologist who saw me, and we discussed treatment and what this means for my future.
Basically, I can never be on estrogen hormones ever again for the rest of my life. I was a little worried because I have both menstrual and non-menstrual migraines, and the birth control was controlling my menstrual migraines. In about a week and a half, I will start a progesterone pill, but I am worried that the drop in hormones will cause a spike in migraines. I'll let you all know how that works out.
In terms of the clot, I was started on Xarelta, which I will be on for 3-6 months.I have to avoid contact sports and I have a higher chance of bruising and bleeding, but I can live with that. I got extremely lucky; the clot was not in an artery so there wasn't a chance of it moving to my lungs, heart or brain. However, I got extremely lucky. I am so thankful because my clot could have been so much worse, and the complications that could have arisen could have been fatal. If I had not known that I was at risk, I may have been sent home again from the ER because I did not have the physical symptoms that were "typical" with blood clots.
After experiencing this, I have two main important points. The first, know your risk factors. Know what the side effects of your medications are, even if it only affects 1% of the people who take that medicine. I was that 1 in 3,000. I never thought I would be, but I was. I knew what I was at risk of, and because of that I was able to get treatment. Being knowledgable about your condition is key to helping yourself become a better advocate.
Secondly, this whole event made me realize that I want to help people with invisible and chronic illnesses and disabilities. Too often we are dismissed, our valid pain discarded because we don't have obvious physical symptoms. I want to create a national campaign raising awareness about invisible illnesses because we do not deserve to be silenced. How will we get the care that we need if no one will believe what we are going through? I experienced this first hand, almost at the expense of my health and life. I want to change how ER doctors and the general public view people with invisible illnesses, so that we will be able to live our lives without fear of being dismissed.
If you would like to help me as I conceive my ideas for this campaign, or if you are interested in being interviewed about your experiences, please email me at e.donnerklein@icloud.com. I am personally very excited to pursue this, and I hope that you will help me as I will try to make my ideas and goals a reality.
As always, I hope you all have a healthy and migraine-free week!

Sources:
https://www.stoptheclot.org/learn_more/womens_health_faq.htm

Highly Unpredictable

I've been putting off posting, not because I don't have posts ready, but because a year ago around this time was the second time that I became extremely debilitated by my migraines. I had a rough week this week, due to the fact that the current round of Botox is starting to wear off around week 11, instead of around week 12 which is next Friday. After having a couple months where my life seemed almost completely unaffected by migraines, I came back to college feeling like my life had turned around. Then this past week forced me to stay isolated in my room for most of the week, feeling unsure of my health. Between monitoring my health, getting all of my work done and trying to just stay alive, I started having fears that I would not be able to continue at college this semester. While I know that I am capable, it is hard to try and talk myself out of that mindset.
With invisible illnesses, there is an unpredictability that accompanies it, sabotaging dinner plans and appointments as well as daily tasks. As someone who likes planning things out, it's extremely difficult to have to drop all of my responsibilities because I am having a migraine. This spontaneity also leads to many feelings of self-doubt and guilt, for having to cancel plans or feeling like you dropped the ball on something.
I am so lucky to have friends and family who care about me and who not only understand what I'm going through but are able to help me get out of the detrimental mindset that one of my friends has deemed "my world is ending attitude." Even though I know that this is only a passing feeling, in the moment it can feel like the most isolating and hurtful attitude someone has ever experienced. I've learned that I should never make important life-changing decisions in this phase, because I will just end up undermining my goals which non-migraine brain me knows that I can achieve.
Despite individual reassurance that you can achieve your goals and live your life despite your migraines, there is always a constant fear that my life will spiral back to where I was for the past two years. No matter how calm I keep myself or how well-planned out my contingency plans are, there is always that little idea in the back of my head reminding me that this is something that I have to factor into my life. Usually, it's a fear that I keep to myself. I usually rationalize it by thinking that no one will understand what it's like to constantly live in fear of one's own body. But recently, I started talking to my friends about it. I started consciously acknowledging this fact and accepting it instead of letting it fester and cause more anxiety. This is not to say that I am not scared anymore, I still am. I am just more aware of it. The life that I live is far from what I want it to be, but I need to understand and accept that even though I have a bad week here and there that I am an accomplished person who has a life and who deserves to be happy.
Even writing this I feel nervous sharing one of my biggest fears. At this same time a year ago, I was going through an extremely debilitating time where I practically lived at Cedars Sinai because I was there so much. I almost travelled across the country to be put in programs at the Mayo Clinic, Cleveland Clinic or at the University of Pennsylvania. Having so much uncertainty in figuring out what was wrong with me medically has definitely taken a toll on me. Yet this year, I'm going to try and live without being scared. I know that I can take care of myself, (I learned how to give myself shots, I can do anything!) and that I have everything in place for my success in school. I've also learned that I need to be vocal about my fears, and step one is sharing this with all of you. No one will know what you're feeling if you don't tell them. Vulnerability is a very hard thing for me to experience, but in this case, it can be beneficial. Here's to hoping that all the med, dietary, and lifestyle changes that I've made can help me stay happy and healthy during this same period this year.
I'd love it if some of you could share your experiences and feelings, feel free to comment below or message me to talk.
As always, I hope that you all have a wonderful, migraine free week!

New Year New Me? 2015 in Review

With finals safely over and the holiday season coming to a close, I thought that it would be worth it to do a "year in review post." 2015 was a crazy year for me, filled with emergency room visits, adventures, amazing life experiences, friends and family. I'm at such a stable point right now, that a year ago I never thought that it would be possible. As I'm looking at my past year, I'm realizing how I was able to get myself to this place, and how I think that many people should approach living with chronic migraines.

I, for one, used to dismiss people who told me that I should really look at the food that I eat and the possible triggers there. I had already been soy and tyramine free for a while, but when it was suggested that I go gluten free for the first time last February, I didn't take it very seriously. How was not eating gluten going to help my migraines? Besides, carbs are my comfort food, how am I supposed to live without that? I was gluten free for about 4 months, and then I became "gluten-light" over the summer, meaning that I had at least one gluten free meal a day. While I still wasn't completely stable, I was feeling much better. When I got to college, brunch was my vice. Every Saturday and Sunday I would eat either french toast or a waffle and absolutely love it...until I had to go lay down for a couple hours. It was then that I realized that maybe I did have a problem with gluten, and it wasn't just some fad diet suggestion that so many people had said I should do. Almost 4 months into being completely gluten free, I am feeling 3 million times better and as a result am having less inflammation, which leads to less migraines. I've also seen a decrease in pain level, which I don't know if it is connected to gluten or not but it's something I noticed. The difference was my commitment, my ability to say that I was going to do everything in my power to control my triggers.

With this updated attitude, I was determined to not have my migraines control my life. I pushed myself to do things that I normally would be scared to do, both medically and academically. Last January, I would have been terrified to give myself shots and would have most likely opted for an acute hospital stay. In early November, I got over my fear of shots by rationalizing what I would miss in college; ranging from hanging out with friends to stress over missing classes and homework.

Taking a more rational approach revolutionized the way that I approach my migraines. No longer do I freak out at the onset of pain, or spiral into what ifs about what I'm going to miss. By staying calm and taking care of myself first, I was able to be more productive and feel better about myself. You can't take care of yourself if you're putting other duties in front of your health. For years, I always pushed and pushed in an attempt to get my schoolwork done, often sacrificing my health and inducing more migraines because I was scared of the retribution I could face by not doing my work. However, I realized that sometimes, deadlines are arbitrary. If I don't finish all of the reading for a class, I can do it later, the most important part is making sure that I can actually get to the class. That reading/essay/response can wait a couple days, and talking to my professors about what was going on allowed me to do my work on my own terms, and allowing me to take care of myself.

I talk to a lot of migraineurs who struggle to balance school with their migraines, and something that I've learned is that creating administrative channels to protect you academically is the best way to succeed. I encourage you to reach out to your class dean, dean of disability, or anyone who can help you by being a resource and helping facilitate a discussion with your teachers and professors. It is necessary to talk to your professors about your condition, even though you may feel like it's embarrassing or hard to talk about. They will not know if you don't tell them, and most of the time they will help you with deadlines or making the work fit to your health and ability. Also, it's okay to cry in front of professors and friends. Migraines are hard. Living with migraines is hard. Sometimes you just need to let it out, even in situations where you feel awkward about talking about your condition. I've definitely felt weird trying to explain what I go through, but I've learned what to say and what to keep to myself. For example, my usual talk goes something like this-
"Hi Professor X, I have chronic migraines. This means that sometimes I will be physically unable to come to class and complete some of the work on time. However, I will be in contact with you when this happens and will get notes from other students and make up the work as soon as possible."

Short, sweet and simple. I explain my condition without actually having to explain the confusing nuts and bolts. Through this conversation, you create a rapport with your professor, allowing them to see that you are a committed student who isn't just slacking off, but instead going through something and sometimes will need some flexibility.

While this has been a long post, I hope my revelations will help some of you through a tough time in your life. A year ago, I never thought that I could go 22 days migraine free, as that is how long I've been migraine free as of today. Through the right medication, diet and outlook, I've been able to live despite the fact that I have chronic migraines. I still have to protect myself from triggers, but I'm challenging myself to do things I never thought was possible. Currently I'm in Maui and yesterday I went scuba diving! With the pressure, I never though it was possible but I came up migraine free and happy. 2015 is over, and I'm welcoming a 2016 full of new experiences. I'm hoping that I continue to stay this stable, but I know that there is always a storm on the horizon. Yet I've learned to live every day to the fullest despite the possibility of a migraine. I hope that you all can to, and that everyone will have a pain-free 2016.

Thanks for listening to all my ramblings! I hope to continue this blog through the year, let me know if you have any suggestions for posts!

Expectations: The Good, The Bad and the Worst

As I'm learning to navigate my life with chronic migraines, I've realized that it's really hard to talk about what you're going through without people having the expectation that I just want sympathy. It's actually the opposite. I don't want sympathy, and I definitely don't expect anyone to take care of me. What so many migraineurs want to hear is that someone is there for them. Not that they're sorry, not "oh wow your life must be so hard." I appreciate people who recognize my struggle but understand that I am a person too, who just so happens to have a chronic illness. To me, it is more important to have someone realize that my migraines are a part of who I am, but they don't define me. I have amazing friends who I can talk to and they support me, whether they can relate to my problems or not. With my friends, I'll be very open about the fact that I didn't sleep, or make jokes about how I'm a human barometer, but to others it is very difficult for me to feel like I can explain what I go through without feeling like I'm burdening them.

Migraines come with immense guilt. We feel guilty that we can't make plans, that we are unable to function sometimes, or that we are letting down our families and friends and racking up expenses. It took me almost 3 years and starting this blog to realize that I am not a burden. I am not someone to feel sorry for. In fact, I've learned a lot from my experiences. I have more medical knowledge than most of my friends so I can help them take the right pain killer for their problem or teach them some of my tricks for functioning while extremely nauseous. I know how to give myself shots and I have an insanely high pain tolerance. But most of all, I feel like I have a greater understanding of other people's problems because I know what it's like to struggle.

As finals week is quickly approaching, I've been reminded of the daily struggle that I go through. I was very luckily migraine free for 24 days (24 whole days!!) an that ended this week when I had a two day migraine. I got very lucky and was able to function decently well through them, but it still was disheartening to realize that no matter how hard I try, this will always be a part of my life. While that may suck sometimes, I also realize that it's taught me a lot. For example, my time management is great, because when my head is working with me I get so much done. I also am great at functioning when feeling terrible, and realizing when it's time to take a break. I also realize how important it is to open up to people and talk about things in my life so that I don't get a migraine from not having my emotions in check.

As my first semester is starting to come to an end, I'm very thankful for my friends, who have encouraged me to open up about my migraines so much so that I trust them so much and am not scared of judgement from them. I still do downplay my condition when meeting new people, but I've realized that in order to educate others I need to open up about my condition. Change will never happen if you stay silent. If you or someone that you know has migraines, remember that it truly is an invisible illness and oftentimes I will go around with pain and not tell anyone. Remember that everyone has their own struggle, and that no matter how okay that a person may seem, they may be two seconds away from breaking down. Personally, I try to have a "look good, feel good" motto where even if I'm feeling absolutely terrible, I'll take the time to put on makeup and dress up a bit so that I can feel a bit better about myself. It's the small things that get you through the day, especially when you have a support system of people who love you and care for you more than just for your migraines.

I hope everyone has a stress-free finals week, Happy Chanukah and a wonderful rest of the week!

Gluten-Free Thanksgiving

Ah! It's been so long since I last posted, and I am so sorry that I've been MIA! School and a capella have been taking over my life and it's left very little time to blog. It's almost time for finals so this will probably be my last post for a little while until I'm back home for winter break.

I thought I'd talk a little bit about my first gluten-free Thanksgiving and the how it was. I am in no way endorsing the products that I'm going to talk about, this is just what I've found to be the best for me! I was with my family, and Thanksgiving was 5 days full of family and food. I was a little bit worried that I was going to struggle to find things to eat, but we ended up going to my savior and holy grail,Whole Foods, which has some of the best gluten-free items I've ever had before. I started off by grabbing my favorite brand of gluten-free bread, Canyon Bakehouse, which is the most bread-like gluten free bread on the market in my opinion. That loaf of bread got me through numerous lunches where otherwise I would have just been eating deli meats by themselves. I also grabbed Udi's double vanilla muffins, which we also get at my college.  I also love the double chocolate muffins too! These were my breakfast for the week, which was wonderful because they taste like regular muffins and not like cardboard.

Moving onto the actual Thanksgiving feast, my wonderful mother found gluten-free cornbread and proceeded to make an amazing stuffing out of it with lots of veggies. When I brought back leftovers for my friends at college, they gave it their stamp of approval.
Our turkey and cranberry sauce (a recipe that has been passed down through my family) were both gluten free and staples in any thanksgiving meal. It wouldn't have been a true thanksgiving without sweet potatoes with marshmallows, so of course I loaded up my plate with that.
Walking into Whole Foods last Tuesday, I was worried that I would not get dessert because there wouldn't be any gluten free pies or cakes. I was very wrong, and I strongly encourage everyone to try the Maine Pie Company's pies. We got both pecan and pumpkin pie, which turned out to be amazing.
What everyone in my family failed to realize was that these pies were not pre-baked, so when dessert rolled around, I was surprised to find soupy pies in the wrapping! With some quick thinking, many of my family members stepped in and helped me to bake the pies so that I would be able to eat dessert within an hour! I then proceeded to eat half of the pumpkin pie by myself for the next day and a half.

I also tried local gluten free bagels from a bakery in New Hampshire, which given how most gluten free bagels taste like cardboard, I had very low expectations. I was pleasantly surprised that these tasted more like regular bagels and that I could finally have my bagels and lox that I had been craving since I went gluten-free.

All in all, it was a great Thanksgiving, filled with family, friends and food. Unfortunately I forgot to take pictures of all of products that we used but that will be a task for next year's Thanksgiving. Did you have a favorite gluten free food or recipe that you want to share? Comment below or share! I hope everyone had a lovely, migraine-free Thanksgiving vacation, and that you all have a lovely couple of weeks. Good luck to everyone who has finals!
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