This past week marked my 5th year anniversary of having POTS. I remember it like it was yesterday. It was right after Howard’s homecoming my freshman year, when I got a cold. It started off as a normal cold that people get in the fall, once the weather starts changing on the East Coast. Only this cold developed into a prolonged cough, which eventually subsided but developed slowly but surely into POTS. It took me a year and a half of weeks in the hospital, never ending doctors appointments, and almost every lung and heart test/procedure with no answers, until I was finally diagnosed. Five years later, I am struggling to find a treatment that works for me.
It’s been five years of a variety of symptoms including extreme fatigue, dizziness, rapid heart rate and fainting. Then I have had the indirect effects such as fainting injuries like concussions, bruises and even a split lip. At this point I don’t even remember what it is like to be normal. It’s been five years and within those five years I have adapted to my life with POTS. I have learned to pick my battles. I have learned which days I can push my limits and which days it would not be wise to do so. I have learned to deal and strategize in order reach my goals. I have learned to hide my illness and go about my business in order to live a semi-normal life.
It’s been five years and I find myself in the same position I was in five years ago. For almost six frustrating weeks, I have had fevers almost constantly, which have been affecting my POTS. I have been to two cardiologists, interventional radiology, primary care doctors, multiple trips to the ER, and even an infectious disease doctor, all with no answers. We had all assumed I had an infected port, which was removed but the cultures were negative. Now they will not replace my port unless the fevers are gone, for fear of developing sepsis. I am having an extremely difficult time without my saline infusions and my POTS symptoms have been been bad. Then the doctors thought I had endocarditis, an infection in the lining of my heart. That wasn’t the culprit either. Most recently, the doctors told me that I had either an asymptomatic UTI or kidney infection but they were not sure if it was the root problem, unfortunate coincidence or just popped up from being on so many drugs/having stress on my body(basically having a weakened immune system). I got put on more antibiotics in hopes that would solve the problem. Looks like they were wrong once again because the fever is still here! At least now I have a team of doctors on my side, trying to figure out a cause so that we can find a solution. Once we finally have a solution, I still need the surgery to replace my port and then get back on track with the experimental procedures. In the meantime, things just kind of suck for a lack of a better phrase/word.
I am back to making adjustments to my “new life” of dealing with additional health problems. I have to replan and strategize, occasionally having to miss out on things due to my health. If you know me, you know that I am very driven and the person that needs to keep doing it all. I try to be Superwoman, so this situation hard for me. I haven’t figured out how to adapt yet. I don’t think I want to adapt or make sacrifices. How do you sacrifice things that make you happy? Do I sacrifice things for my health but be miserable because I am unhappy or don’t sacrifice anything and be miserable because I am so sick? I refuse to be unhappy but it might be the point where I make some sacrifices. Have I finally reached my limit? Pulling back won’t make me any healthier but there is no way to ensure that things still won’t get worse. If I sacrifice, will it really be worth it? These are the questions that I struggle with every day. This is my hidden truth. This is my life.
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No one can say you haven’t thought out the multifaceted issues that POTS has caused in your life. What I find amazing about you is that you don’t give up, you refuse to let POTS define who you are, or limit what you want to accomplish. Yes, POTS often makes you adjust your time table, makes you take down time in order to stabilize your health. But you don’t let it take over. Keep trying like you always do. Keep believing that you will find a way to manage your POTS symptoms even when it feels like every avenue has been explored. Keep setting your goals and achieving them. You are a trailblazer in so many ways, my hero. I love you and I believe in you. Don’t ever quit trying, you are going to accomplish so much, I know it. Your Faithful Supporter, Aunt Johnnie Sue
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