POTS may be invisible but the symptoms are not

Once you lose hope, you lost your battle

It has been a while since my last post. The past few months have been going really well since my symptoms have gotten more under control. There have been a few bumps in the road during the summer, but the new obstacle that has come up is my extremely depleted iron.  On Thanksgiving, my body began to get really achy, which I have never experienced before. As the day went on, the aches kept getting worse, and by the afternoon I ended up passing out and going to the hospital. I figured they would give me fluids and I would go back home to eat some (gluten-free) pumpkin pie. Usually after one bag of fluids I feel much better, but my heart continued to race, I was still achy, and still very potsie. I was kept overnight and they continued to give me fluids, which was not helping. The next day they took some blood work and found that my iron was severely depleted, and my electrolytes were on the low end of the spectrum. After coming home from the hospital, I still wasn’t feeling great and stayed home from school for a week. I was given prescription iron supplements and ate a high iron diet, but I am still extremely fatigued. Since being in the hospital, my symptoms have not improved. I have days where I feel a little better, but for the past two weeks it has been rough. I am weak, exhausted, and do not have the energy to do anything.

It’s anxiety provoking to have setbacks when you have been doing well for so many months. POTS is like a roller coaster, you will have months of controlled symptoms and then all of a sudden there can be a drop. It’s the downfalls where you have to be strong. It’s easy to give in to symptoms and give up. The day after I left the hospital, I was so upset that I was having a relapse and I was ready to stop going to school and give up. My mom reminded me of how far I’ve come and how far I still have to go. POTS is a life long journey of ups and downs, you never know when you will have a flare or when a cold can turn into a relapse. It’s easy to fall into the cycle of always fearing the worst, of always being paranoid that that single sneeze will cause full-blown autonomic failure. I am typically not a half glass full kind of person. I usually look at things from a more pessimistic point of view because I hate disappointment and like to be realistic. Throughout the past two years, I realized I couldn’t handle POTS like I’ve handled other things. You need to be optimistic and enjoy the little things in life. It’s very easy to fall into a black hole of desperation; it’s easy to look at how terrible it is to be stuck with a chronic illness, but you need to find your source of light. I found my source of light through my family. Having a big family with 5 nieces and nephews has really helped me get through the obstacles.  My sister texted me a few days after getting out of the hospital and told me my nephew said that they should get me comfy pjs for Christmas because the doctor said I need to stay warm. Its small things like this that make me keep pushing through the symptoms and try to live a normal life.

Hope is an important factor when living with a chronic illness. Once you lose hope, you lost your battle. I’ve learned that hope and determination are the two most important factors that will get you through anything. There will always be downfalls in whatever you do, but you have to hold on to the hope that you will get better and will live a normal life. You have to be determined to fight through your symptoms no matter how tired or weak you are. It is easy to give up, but the easy way out will never get you anywhere. Sometimes when I start to lose hope, I picture happy things and a bright future. I have days where I feel like I can’t do it anymore and days where I question why I am pre-med since what are the chances of being a good doctor when my health is not under control. It’s those days that I take a deep breathe and remember why I want to be a doctor. I want to be a better person; a person that can help sick people and a doctor that I wish I had. I want to be a doctor that doesn’t give up on her patients and helps them fight through the bad days. Sometimes you don’t achieve your goals, but without goals, what are you living for? I have ambitious goals and my goals of becoming a doctor has helped me fight through the bad days and will continue to help me fight through my symptoms. 

I'm Fine

“I’m fine”, is a common phrase I say when people ask how I am doing. It is so much easier to say “I’m fine” than to explain the struggle of finding food that is gluten free, or struggling to get through the day without a nap, or even explaining how hard it is to stand without feeling dizzy or getting the sensation that you are going to pass out. Sometime I forget that I don’t show symptoms like other diseases, and people can’t actually see that I am living with a chronic illness.

Yesterday I was not fine, and it was evident that I was not okay. Yesterday afternoon I started getting sharp chest pain, which is not a normal symptom for me so I was a little concerned. I decided to go to a clinic to see if I can get an EKG to make sure my heart was okay, but the clinic had no idea what POTS was (shocker…). The clinic said to go to the ER and I already was feeling like I was going to pass out, so I agreed that it was a good idea. On the way to the ER, I got significantly worse; everything was spinning, I lost feeling in my leg, the sun was killing my eyes, and I started getting twitchy. My mom had to pull over and call 911. It is so frustrating that most paramedics and doctors don’t know what POTS actually is. I typically take charge after I regain consciousness. When I got to the ER my face was beet red and my limbs were frozen. When I was at Mayo Clinic they recommended that if I started feeling significantly worse to go to the hospital and get IV fluids, so when I got there I told the nurse to hook me up immediately. As usual all the tests came back normal and I eventually got discharged.

A lot of people don’t understand what it is like to be chronically ill and they think it is no big deal. People don’t understand that it is life altering, and that I could not function without my support system. I would not have been able to continue school or gotten my symptoms under control without my family and friends. My mom, dad, sister, brothers, and best friends, Kelly and Camille, have helped me over the past two years so much that I could never truly show them how much I appreciate them and what they have done for me. They helped me get through so many struggles I faced and never let me push them away like I did with a lot of people.

Sometimes I wish POTS showed symptoms so people aren’t so shocked when I say I have a chronic illness. I feel like if POTS showed symptoms, I would definitely get pitied, but people would also know that POTS is a real disorder and know I am not faking. Since having POTS, I have noticed I have a little bit of social anxiety. I get nervous meeting new people because it is hard to explain that I can’t do something because I may pass out, or I am too tired, or I can’t stand for that long. I don’t want people to judge me based on my illness because I am so much more than that. Starting a new school in the fall is making me a little anxious in the fact that no one at Rutgers knows I have POTS. I do not have my friends near me that could help me if something were to happen. My symptoms are a lot better, but I do still get bad days. I know it is going to be hard to explain to my new roommates and friends that I have a chronic illness that greatly affects my life. When it comes to chronic illnesses, you don’t get it until you got it!

Help Spread Awareness!

The SandPaper published my article (Anxiety is not Always the Answer).

When Illness Defines Who You Are

“The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out.”

-Dr. Paul Kalanithi

A few weeks ago I shadowed a doctor and he had suggested I read When Breath Becomes Air by Dr. Paul Kalanithi. As I was reading this book, it made me think about a lot of different things, and one major thing it made me consider, was that life is very short. Dr. Kalanithi put his entire life into academics and becoming a neurosurgeon, only to die of cancer after his daughter was born and he became a full-fledged attending. Dr. Kalanithi was an amazing role model that lived a successful and fulfilled life in a short period of time. As someone with a chronic illness, it is easy to define yourself as the illness. It is easy to say “no I am to tired to get out of bed today” or “I have POTS I can’t do that” but the real question is: why can’t you do that? Can you not do something because of the illness preventing you or because you have given in to the symptoms?

            Having a chronic illness is not always synonymous as having a terminal illness. It is so easy to define one’s self as an illness or as the symptoms. I find myself saying I am always tired or I am too weak or I am too dizzy. I am defining myself as these symptoms; I may be feeling like this, and I may be all these symptoms, but fatigue, dizziness, and weakness are not my only characteristics. I am smart, I am a student, I am a daughter, a sister, an aunt, and a friend; I am a lot of things. I am not only the POTS patient. For the past two years I have defined myself as the sick girl, but if I see myself as the sick girl how does everyone else see me? I do not want the world to see me as the sick girl, I want the world to see me as a strong, independent woman who has huge goals and plans to achieve those goals. By defining myself as the “sick girl”, I am becoming my symptoms, and allowing others to see me as the sick girl.

            Being sick is a vicious cycle, but what I have learned is cycles can be broken. By having a chronic illness, it is extremely easy to get caught up in the cycle of fatigue, doctors’ appointments, diagnostic testing, and so on, but there can be an end to this cycle if you say so. Yes, you still have to get tested and go to the doctors, but that doesn’t have to be your whole life. You can still pick up a book and read, you can still hang out with friends; you can still be a viable person. I have let POTS dictate my life and who I want to be as a person, but it is time to take control again. I read different POTS Facebook groups and I see how so many other people get caught up in the cycle of symptoms, (and I am not belittling the symptoms because I 100% understand how hard it is to live a normal life with them), but I sometimes pity these people because they do not see the silver lining. They do not see how life creates unwanted obstacles and if you just go slow, and keep steady, you will get over these bumps in the road. The thing is you need to be stronger than the symptoms; you need to take baby steps in taking control of your life again. I read all these negative posts and I remember when I first got sick and how everyone thought I was faking, but I stood up for myself. I found my inner strength and demanded to find an answer and not let these horrendous symptoms define me. I continued going to school, I ignored the negativity from family, friends, doctors, and professors, and attempted to lead a relatively normal life. I sometimes think, what would have happened if I listened to all that negativity to quit and I gave in? Would I be worse? Would I have more nerve damage? Would I be depressed? Would I still be a pre-med student?

            The past two years I have found that I have been full of anger and regret. I am constantly thinking: what if I chose another school to go to instead of Fordham; would I have gotten sick? Why did this happen to me and not someone else? These questions have ruminated in my head for the past two years and I have realized that contemplating is not the answer to continuing to live. All this has done is create a large wall between me and everyone else. I have isolated myself. I have pushed people away, afraid of what they will think of me if I pass out, or if my feet turn purple, or another symptom arises. I can blame the POTS for forcing me to isolate myself, but I now know it was my internal negativity that has created this in response to POTS. From now on I will not let POTS consume me because there is nothing I can do about it. I can only accept it. I can continue to complain about how miserable my life is because I cannot have a true college experience, but in reality it can be significantly worse. I have family and friends that love me, I am getting an education, I can walk, breathe, read, freely speak my mind, and so much more that many people in this world cannot do. Yes, it is miserable to have to live with life altering symptoms every day, but it is not the end of the world, in fact, it is far from it. By redefining who I am, I am becoming a stronger and more intelligent person. People can continue to belittle my symptoms and my hardships and that is fine, because I will not let it affect me. I am paving a future where POTS is a microscopic characteristic, and people will see me beyond this disease.

            From this whole experience I do not only have a new outlook on life, but also I have a new outlook on myself. I see how strong I actually am. I have fought through my symptoms and I will continue to fight for the life I want. Many people ask why I want to be a doctor and assume it is for the status or the money, but really I want to be a doctor to make a difference in someone else's life. People work towards jobs to make a living and coast through life, but I want to challenge myself with a meaningful job. I want to be able to go to sleep at night and know I made a difference in someone else’s life. When I got sick, I didn’t think I would be able to achieve my dream and for a few months I gave up and decided I would go into architecture or in finance. I tried picturing my future as an architect or financial advisor, and I saw nothing. I saw a bleak life. Last summer, my mom asked me why I gave up on being a doctor, especially since I wanted to be a doctor since I was very young and that's when I realized that I had no legitimate reason. My only reason was because I have POTS. At that moment I knew I was giving up on life and just letting POTS consume everything. Taking that first step, deciding that I do want to be a doctor, was just the beginning of chipping away at this shield I created for myself. I was blocking my dreams and the world with this shield and using POTS to rationalize it.

            Life goes on, with or without you, and shadowing a doctor in a hospital for a week shows how quickly life passes by. People die every day from a variety of different causes. POTS may be chronic and a nuisance, but it is not terminal. It can be easily made terminal if you give in to the symptoms and allow yourself to stop living. For the past two years I pushed myself to get better, but I also let life pass right by. There are ways to manage symptoms and continue to live a full and successful life. By complaining and letting life pass right by you, you are creating a terminal illness for yourself. The one great thing that did come out of having a chronic illness is the drive and determination that it has instilled in me. I am not letting POTS be a large portion of my character anymore. I refuse to be afraid anymore; afraid of getting sick, afraid of a bad relapse, afraid what people will think. POTS has given me a new outlook on life and has made me stronger.

Memorial Day Weekend!

Since going to the Mayo Clinic I feel like my symptoms have been more under control, which is great! My new heart medicine is allowing me to sleep and keeping my palpitations more under control. The iron pills have been giving me a little more energy. And working out has been making me feel better in general. One major issue with feeling a little better is ignoring my symptoms. I keep thinking that I can keep pushing myself, but I then feel worse the next day. If I push myself one day, I have significantly less energy, feel weaker, and overall I feel worse the next day.

            This Memorial Day Weekend, I went down to the Jersey Shore with my sister and her family for her birthday (Happy Birthday Mimi! Love you more <3). Yesterday, the beach was in the low 70s and windy so it was the perfect POTS weather. Since I have nerve damage and I have problems with my thermoregulatory system. I have to be extra careful to not over heat so I carry fans and cooling blankets around with me everywhere I go. I was on the beach for a few hours because it was so nice, especially for a POTS patient. We then went to Fantasy Island, a small amusement park, with my nephews and I was standing and walking a lot. Today I am not feeling so great. I feel slightly overheated (even though I am in the AC), I feel very weak like my knees are just going to give out, I’m fatigued, I’m twitchy, and I have no appetite along with nausea. I am wondering if I feel overheated because of the sunburn (if anyone else with POTS knows if a sunburn can affect POTS symptoms please comment!). Today, I am just going to relax in the air conditioning and watch X-Men with my PowerAde, and hope I feel better.

            It is irritating when I am slowly feeling better and once I put out a little extra effort, I feel significantly worse. I have to stay conscious about the fact that I do have a chronic illness and redefine what a normal life is for myself. My normal life is very different than a healthy person’s normal life. I may look healthy, and since I have been feeling better I may even seem healthy, but I still have POTS and I still have limitations. With summer coming I really have to be extra conscious about what I do because of the heat and humidity, which really infuriates my symptoms.

Hope everyone is having a wonderful Memorial Day Weekend!

POTS, Stress, and a Cold

POTS, stress, and a cold….what a wonderful mix! This is the last two weeks of school and I have so much to study between the end of the semester tests, papers, last minute assignments, and finals. Stress is not a pleasant thing for healthy people, but stress for a POTS patient is significantly worse. When someone has POTS, their body is in a stressed out state already. The body is in a constant fight or flight mode because the sympathetic nervous system is overactive and persistently on. When someone is attacked, their body goes in a brief fight or flight mode because of the immediate danger and stress of the situation, but since I have POTS, my body thinks I am constantly getting attacked, so I am always in fight or flight mode even when relaxed. So, with the added stress of schoolwork, my body is not very happy right now. I just cannot wait for summer, even though my summer will be filled with organic chemistry.

Typically, when I am more stressed I feel my symptoms a lot more; I get more fatigued, my heart races more, and I just feel more run down. When I know I have a lot of work coming up I try to plan accordingly; I plan weeks ahead and try to start assignments and studying early to stay as stress-free as possible. The problem with this past week though was I just had so much to do and just didn’t start early enough. With my last chemistry test, an 8 page rough draft on the one child policy, and a sociology paper to get done there was no time to breathe. Some things I do to try to alleviate the stress is use meditation apps and deep breathing. When I notice that I am really not feeling well, I take 10 minutes and listen to a meditation. Meditating evokes the prefrontal cortex, which is the part of the brain you have more control over. By using the prefrontal cortex, the limbic system (where stress if processed) is not as active.

Stress wears everyone down, but it really exacerbates my symptoms, which is why I live by the motto “it happens”. As a control freak and perfectionist, I try to do everything flawlessly and when it is not up to my standards it stresses me out even more. Since getting sick and realizing that I have to adapt to the illness, I realized that not getting a 100 on everything is not the end of the world. I learned that things happen and you cannot control everything. Since I got sick, my first month of college, I realized that I have to take baby steps and by pushing myself and challenging myself I am actually fighting the POTS. I learned I cannot push myself too much, but a little extra effort goes a long way, health-wise and in schoolwork.

Another thing that has been helping me feel better and relieving some stress is working out. I have been trying to work out 30-60minutes a day, at least 5 times a week. Since I started working out again, I have been feeling much better. I have started using the treadmill again and my goal is to be able to hike in Costa Rica in January (I cannot wait to see sloths!!!). At the Mayo Clinic, they told me to set goals for myself and look forward to reaching them. At first, I thought that was so cliché, but since setting my goal, it has been my driving force to go to the gym more often.

Between all the stress, my weak immune system, and the fact that everyone at school is plagued with some sort of virus/cold, I have also caught this plague. It started off with a sore throat that I tried to ignore, but it kept getting worse and is now accompanied by a really bad cough. Being sick is terrible for anyone, but being sick on top of having a chronic illness (during the last two weeks of the semester), is beyond miserable. Getting sick with POTS is always a slight set back because you finally get adapted to the constant fatigue and weakness, then all of a sudden you’re even more fatigued (if that’s possible!), weaker, and on top of the elevated POTS symptoms, you have a sore throat. Some cold medications, especially ones with antihistamines, tend to increase your heart rate, which is something my body does all by its dysfunctional self. I personally hate taking medications, and am already on more medications than the typical 80-year-old, so I try to avoid adding cold meds to the daily cocktail of drugs. To help my sore throat, I made Powerade ice pops to soothe my throat as well as getting my electrolytes in (#POTSprobs). I have also been drinking a ton of chamomile tea, which is the Croatian cure to everything. If this sore throat gets worse, I am probably going to have to go to the doctors (story of my life), and make sure it isn’t strep, but hopefully, tomorrow I will wake up with no cough or sore throat…one can only hope!