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What POTS Took From Me and Gave Me In Return

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It took me close to five years to finally get a diagnosis of postural orthostatic tachycardia syndrome (POTS). At first getting the diagnosis was a huge relief, it wasn’t all in my head, I wasn’t imaging it. Then the panic set it, this is forever and it isn’t going to go away. POTs has taken a lot away from me, but it’s also given me a lot, too.

POTs took away some of my hobbies, I can no longer competitively show my horse, but it’s also given me a newfound appreciation for swimming which is something I both love and can do.

POTs made me aware of who my real friends were and who left when things got hard. It has also pushed me into making new friends. Friends who appreciate me for me and are okay when I don’t have the spoons to do something.

Two female friends wearing sunglasses, smiling at camera.

POTs took away my ability to comfortably walk around the mall, but has also shown me that there are people in my life who are willing to sit with me until I can start again.

POTs took over my body but it also has made me strong at reading my warning signs and given me the ability to properly advocate for it with my fantastic team of medical professionals.

POTs showed me how much my family really loves and cares for me.

It’s true that POTs has taken more from me than I ever imagined, but what it has given me in return is truly irreplaceable. Although this life has its challenges, I wouldn’t trade it.

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How I Arrived at My Dream Job Despite Battling With Illness

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“Choose a job you love, and you will never have to work a day in your life.” — Confucius

This was the plan when I decided I was going to go to fashion school. However, one of the biggest challenges when faced with chronic illness was knowing it would be difficult to find a job in fashion that would accommodate my needs — a “sit-down” job that is rewarding, exciting  and pays well — and I would have to accept whatever I could find, even though I’ve never been one to settle. What you may not realize is that it’s hard to get a job in fashion without prior entry-level experience in retail – which is nearly impossible when you’re unable to stand for long hours, can’t do heavy lifting and using ladders is out of the question (due to postural orthostatic tachycardia syndrome, or POTS) — and you were denied the right of passage of a “first job” during high school due to a low white blood cell count (see my article on thyroid cancer for more on this).

POTS and thyroid cancer disqualified me from a lot of things. It can be incredibly isolating when you’re sitting on the sidelines, but what I loved about social media was that I could still be my bubbly self, as it allowed me to have the interaction with other people that I thrived on, even on days when I couldn’t leave my bed. As my “dream job” evolved, this made getting my master’s degree in PR and journalism all the more worth it.

Unfortunately, I wasn’t the only millennial vying for a remote job in this competitive field. When I dealt with rejection, what I did might surprise you — I refused to give up on my dream. I joined LinkedIn, added valuable connections as though my life depended on it and, sure enough, opportunity found me, and what followed changed my life.

Soon I was “discovered” by Brian, who was looking for someone with experience in my field to bounce ideas off of. I was eager to help and full of good ideas – my hard work and dedication made me indispensable. I became the communications director for Brian and his business partner Matt’s company that they didn’t realize they needed — and to me, this was likely the opportunity of a lifetime. Neither one of us knew at the time that this would be my actual dream job. It gave me the autonomy to carry out my creative vision, while enabling me to work remotely, sometimes from the waiting room at the doctor’s office. But best of all, I was able to use my expertise to create a lifestyle brand and grow our following, while supporting causes I believed in.

But opportunity did not stop there: as I garnered quite the reputation as the local social media guru, I’ve realized even bigger dreams. I had found my niche and I eventually went on to lay the foundations for starting my own business as a consultant, advising new brands on developing their image and expanding their following.

It was through my friends, Brian and Matt, that I met Ben, and everything came full-circle when I jumped on board with a cause that hit close to home — I knew for sure this was my true calling. Ben created a cosmetic company, Amend, which is geared toward men struggling with skin imperfections. This struck a nerve, as I remembered what it was like to feel self-conscious about my thyroidectomy scar — my preoccupation with these feelings had begun to impose an obstacle that was getting in the way of enjoying things I had been looking forward to and from being myself.

In fact, the first time I went out without the bandages was prom — I mentioned this to my makeup artist and she did her best to conceal my scar. I was instantly uplifted and the anxiety went away. But what if I had been unable to ask for what I needed? As a woman, make-up is accessible to me; I could not imagine what it would be like for a guy to feel out of place asking for concealer — since there is, of course, a stigma attached to men’s skin care, which is an unfortunate drawback for many.

You see, this particular experience played a role in choosing to pursue my fashion degree. While it might seem almost unbelievable that my outward appearance had such a profound affect on my emotional and physical well-being, the power of the mind is a complicated thing to understand, as those who are battling chronic illnesses know all too well. From there, I set out to establish Ben’s brand as a source for fashion tips, motivation, skincare topics, etc., because to me, confidence is achieved at different levels: mind, body and soul. It has always been a dream of mine to give back, and this allows me to give others something priceless: self-confidence.

I assumed my chronic illnesses would get in the way of my dream — but now I realize I never had to let go of it after all. To anyone else facing a similar struggle, don’t get discouraged if you can’t find the job you’re looking for. Sometimes you have to find a problem and offer the best solution for it. I found a demand for my skills and made a business out of it. Even though my path was rather unconventional, I got there. And everything fell into place.

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Why My Life With POTS Is Like a Hallmark Movie

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What do you do when you are stuck in bed for the better part of 15 months? Watch an awful lot of lot of Hallmark movies, of course. While they are certainly predictable and perhaps a little too saccharine at times, they are low intensity, don’t require much thought, and upbeat— all things that work well for me right now. Having seen dozens of these movies the last year, I’ve discovered they all follow the same pattern.

It goes like this:

  • Life is going well
  • A sudden change turns everything upside down
  • Main character slowly starts to adjust and find happiness again
  • Another dramatic plot twist occurs that generally requires the main character to make a tough decision, reflecting on the deep, heartfelt lessons she has learned over the course of the show and what really matters most in life, and oftentimes choose between her old life and new
  • A decision is made and the best possible outcome emerges. Everyone lives happily ever after.

One common subplot of the Hallmark movie is the dream sequence. The main character wakes up to find that her life has totally changed — for better or worse.  At the end of the movie, she awakens, once again, to realize the “new life” was somehow just a dream and she is able to go back to her old life with a new found perspective to enrich and improve her life.

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I have been home bound and mostly bed-bound with postural orthostatic tachycardia syndrome (POTS) for over a year. A couple months ago I attempted to attend my son’s Eagle Court of Honor.  He has been working diligently on getting his Eagle Scout award for the last five years, including earning numerous merit badges and culminating in a 90+ hour service project that involved his family, neighbors, and community. I was so proud of his accomplishment and determined to attend his Court of Honor. Yet, I showed up and was immediately overwhelmed by the light, noise, and chaos around me. I started to crash and ended up passed out on the couch in the foyer. (Fortunately, I was able to make it back in just long enough to see him be given his award, before my husband promptly wheeled me out and back home.)

I came home upset and discouraged, once again, at my limitations.  The thought occurred to me, “Why can’t my life be like a Hallmark movie?  Why can’t I just wake up and have my old active life back!? (And, of course, still remember all those great heartfelt lessons I’ve learned from the past year.)”

Totally plausible, right?

Fast forward a couple weeks. I had a good day! I was able to go sit in the temple for a few minutes. (The LDS temple is a house of worship where sacred ordinances are performed and instruction received. Everything in the temple is light, white, and bright. People speak and act in reverent tones, and feelings of calm and peace prevail). I had been unable to go to the temple for over a year, and while I couldn’t participate in any ordinances, I was so pleased to just go bask in the peaceful atmosphere for a few minutes.

With my POTS, my tachycardia and excess adrenaline always make me feel somewhat frantic when I am sitting or standing. And while those symptoms were still present, there was certainly a layer of calmness there that I have been craving.

As I sat in the celestial room, I reflected on my life circumstances and found myself caught up in silent prayer. A thought came clearly to my mind: “I have everything that matters most.” Yes, I dearly miss our family adventures — traveling, exploring, hiking, and biking.  Yes, I miss being able to go out with friends and throw or attend parties. Yes, I miss wearing the nice clothes and jewelry hanging in my closet (yoga pants and t-shirts are my staple now). Yes, I miss shopping the aisles of Target, Kohls, and Hobby Lobby looking for those great deals that give me a temporary high. Yes, I miss helping at my kids’ school, going to their programs, and even cooking and cleaning for them. Yes, I miss having the independence to go where I want when I want and not having to leave the house in a wheelchair or live in constant dread of passing out in public. But, in the eternal scheme of things are those the things that really matter?

My family’s basic needs and wants are met. I have an incredible, loving, and compassionate husband. I have four amazingly sweet and healthy children. I have family, neighbors, and friends that I love and that love me in return. I have faith in Jesus Christ and His gospel. I have everything that matters most.

Fast forward one more time to last month. Over the holidays I wasn’t feeling well (chalked it up to typical POTS stuff, plus straying from my restrictive diet). However, within a couple of days my symptoms had escalated greatly. I was in as much pain as I have ever been (including labor). A trip to the doctor and, later, the ER proved fruitless as, after blood work and scans, no apparent problems could be identified. For most of the week I have been curled up in bed with my pain level hovering at a nine to 10. It has been excruciating and unbearable. I couldn’t eat, and even drinking water sparked intense pain that nothing could touch. I sobbed from the pain, but also the terror that this might be my new reality.

Miraculously, after a week, the doctor’s office called to report that the initial screening that showed no infection was false, and I did, in fact, have an infection, which was probably also exacerbating all my other issues. (Hallelujah for an answer!). Although it took several rounds of antibiotics, I was able to get a bit of relief after the first few days. The pain has eased, and although still trying to calm the rest of my flaring symptoms, I am grateful to be past that horrible ordeal.

In some ways, I guess my life is a little like a Hallmark movie — a sudden life change last year with my POTS diagnosis, working to find happiness again with my new disability, and even a dramatic plot twist this week… Perhaps this past month is similar to the dream (i.e. nightmare) sequence. It has certainly given me more room for reflection on what I am grateful for. Although I am not a stranger to chronic pain, it has given me more compassion for others that live with constant levels of such high pain. My typical POTS symptoms, though awful, seem like a walk in the park after that awful week I had. I have seen proof of the saying, “Things can always be worse,” and regained perspective and gratitude for the seemingly lesser problems I have. As I move forward facing the sometimes bitterness of reality, I cling to the sweet reminder I was given that I have everything that matters most.

This blog post was originally published on Mommy Can’t Dance.

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When I Wonder If I Could've Been Diagnosed Earlier If I Explained Myself Better

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“Lightheaded.”

“Dizzy, but not the spinning kind.”

“Like I’m going to faint.”

Presyncope.

I wish I’d know that word back then. Things could have been much easier. I spent months not knowing how to describe my symptoms in a way anyone could understand. I said I was lightheaded so many times for lack of a better word that my mother would finally exclaim: “But what does that mean?!” I didn’t know how to respond — lightheaded was just this feeling I’d been feeling for weeks and then months. Like I was about to pass out but didn’t completely. Or I’d stand up from a seated position and have a couple moments of blackness, go weak in the knees, and slump back down.

Presyncope is a term for the feelings one gets preceding a brief loss of consciousness that may only last a few seconds. It’s not a very common term, one you won’t even find in most dictionaries unless it is particularly medical in nature. Presyncope itself is a symptom of syncope, otherwise known as the actual transient loss of consciousness or sudden change in posture. There are many symptoms that go along with presyncope and they are different for each person. For me, they’re like warning signs. If I’m at risk of passing out, I might get what feel like hot flashes, start sweating without explanation, my legs and hands will begin to shake, my vision may blur, and my heart rate will spike too high. But ultimately, the most overwhelming symptom is the feeling that I’m about to go under — the presyncopic feeling of lightheadedness.

It took me months to finally be diagnosed with postural orthostatic tachycardia syndrome, or POTS. I can’t help but wonder if the diagnosis could have been speedier if I could have better explained myself to my parents and doctors. After my first syncopic episode which was followed by a persistent presyncopic feeling, I went through doctors like air, seeing first my general doctor, a neurologist, a special diagnosis doctor, another neurologist, and finally a doctor that specialized in autonomic dysfunctions.

It took me 11 months to finally receive my POTS diagnosis and I’m told that makes me lucky. For some people it takes years to receive that diagnosis and other people may go their whole lives without knowing they have an autonomic dysfunction. I also realize that I am extremely blessed to live in an area that has many doctors nearby, and that I am extremely lucky to have found one of the nation’s only POTS doctors working just a few miles from where I live. None of that escapes me. But there are times I also wonder if my painstaking search for a diagnosis could have been much less prolonged and difficult if I had only known how to explain myself better.

If you’re going through what I did a few years ago, searching for a diagnosis, struggling to get people to believe in you and your invisible illness, know first and foremost that you’re not alone. Someone will believe you. It will happen. Don’t let people talk you out of believing in yourself because then you will be completely lost. And do some research on your symptoms. Try to avoid diagnosing yourself over the Internet, which can sometimes be a scary place. Instead, focus on the symptoms and search for ways to make them as specific as possible. I knew I was in the right place when I walked into the doctor’s office and read the sign in bold letters: We believe you.

For more information on syncope and presyncope, click here: here.

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The 5 People You Meet When Living With POTS

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A diagnosis of postural orthostatic tachycardia syndrome (POTS) is life-changing, as are the symptoms often experienced years before diagnosis. POTS is far from a rare disorder. Millions in the U.S. are living with POTS and millions of others may be misdiagnosed with mental illness or another neurological or cardiovascular disorder.

Whether you’ve had POTS your whole life or recently acquired it, it’s very possible you’ve met the following five people.

1. The Disbelieving Nurse

Or ER doctor. It never fails. We’re going to occasionally get sick after hours or in an unfamiliar place. Our specialist or family doctor will be helpless to come to our defense. We’ll go to the emergency room with racing hearts, unable to walk, struggling for breath, and fainting only to wait seven hours and go home with a diagnosis of anxiety and Valium that we may not use. Why? Oversensitivity to medications.

When I had a reaction to a small dose of morphine, a nurse sternly told me that I just needed to calm down while rolling her eyes. Come on people, all it takes is a poor man’s tilt table to realize what’s causing our symptoms, if our medical charts aren’t enough help.

2. The “Expert”

It could be your boss, a neighbor, or a family member. In my case, it was a WIC nutritionist. Experts know that the “cure” to the illness you live with daily is definitely diet and exercise, even after you explain that there is no cure. Even after you share that you are exercise intolerant and unable to eat many foods.

Yes, exercise can help, but it isn’t a cure. Many of us can’t stand without fainting. I told my nutritionist that my specialist had me on a recumbent bike exercise plan and a special diet. She suggested I dance or jump for exercise after reading two sentences off of a Google search on POTS. Literally two sentences, and then she said, “Oh that’s no big deal.”

3. The “You-Cans”

Unrelated to the colorful birds of the rain forest, You-Cans remind you that POTS can’t be that bad. “You look fine!” they say, and “Look! You’re walking!” While we appreciate those who believe in us no matter what, there is a fine line between support and downplaying our condition. You-Cans cross that line by using their X-ray vision to determine whether we are truly sick or not. My favorite experience with this type of person was the Walmart greeter who scoffed at my mother and I for utilizing a wheelchair. My mom explained I’d been having multiple seizures a day and couldn’t stand for more than 10 minutes. He couldn’t understand how a person could walk in but not walk through the store and stand in lines.

We actually thought my dad was dying when he first became ill. My sister and I were sent to stay with my grandmother while my mom took him to a number of specialists all over the state. Luckily, by the time we discovered it was genetic, my dad was there to assure me I wouldn’t die, even if I felt like I was.

4. The Epiphany

At some point, we were all struggling with no answers. For my family, our primary care physician had a suspicion, but he wasn’t sure how to diagnose or treat us. For my father, he increased his blood pressure with medication. For me, he wasn’t sure what to prescribe that wouldn’t shrink my already low blood volume. He could only focus on trying to control my triggers like heat, stress, and dehydration.

Then came the Affordable Care Act, a true independence plan. Do I think it needs a little work? Sure, but it gave me my life back. With health insurance, my doctor’s support, and my family, I was able to see a specialist in Nashville. When we went in to see Dr. Muldowney, I swear I heard angels singing. He sees people like me all day, every day. It took him less than five minutes to diagnose me after five long years without treatment. He gave me as much of my life back as possible. “I can’t cure you,” he said, “But, I can make you feel better.” That he did. I’m able to work full-time now, and my husband and I are expecting our first child. Specialists are truly amazing.

5. The Fellow

It was years before I knew anyone besides my father who had an autonomic disorder. Then, when I became ill and started passing out and having seizures at work, a woman who had worked with my dad in the past recognized my symptoms. She acquired the illness after birth complications with her daughter and kept anti-seizure tabs in her purse.

A few years later I started a new job. As much as I hated to, like every other job I’ve had, I never mentioned my illness until the job was secured. I was shocked to learn my new boss had already heard of the disorder. Her best friend also had autonomic dysfunction and had actually considered applying for the job I had landed.

Bottom-line here: we’re not alone! I’ve recently joined online groups full of people just like me. It’s enlightening and empowering.

Most Mean Well

While some people are just nasty in general, I think most people, even those in disbelief or denial, mean well. They simply don’t understand autonomic dysfunction and may never unless it strikes their own family. The only thing that we can do is raise awareness and educate. I encourage you to seek out fellow POTSies and a specialist if you haven’t found one yet. It can take a long time to figure out what treatment works, if any, but it’s worth fighting for. Don’t give up hope, and don’t lose your faith in humanity.

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When We Stopped Waiting for My Daughter's POTS to Be Over

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My daughter has postural orthostatic tachycardia syndrome, or POTS, and is part of a research study that allows her to competitively swim again! But she still struggles with anxiety.

Stop Living in Limbo

Of course that’s easier said than done. The last several years of our lives have been in a constant holding pattern as we waited and hoped for it to be over. I read, I research, I look for additional things to add to our routine that might help, even if it’s in some small, minuscule way. I’m continually looking for ways to fix things. I admit I do much less of that now, but it’s always in the back of my mind.

Now that we have settled into the “everyday-ness” of school at home, and as things seem more “normal,” I am starting to realize that as hard as things can be, we still have to live life. We can’t keep waiting for a cure to be discovered or a sudden, unexpected recovery to sweep over her. As hard as the decision was to finally choose homeschool, I feel at peace now more than ever. It made me realize that coming to terms with what we needed to do was holding us back from living life. She is happier. She is able to take breaks as needed, sleep as needed, manage her symptoms as needed. I don’t feel this constant battle of trying to do the impossible every day. I don’t know why it was a harder decision than saying yes to the first dose of the very serious treatment that IVIG is.

Live life. Those are just words. So many times I think of things to say to other people and I realize they really are just words. To follow the advice and actually live life is the hard part. I met another family this month with a daughter just beginning to go through the same thing as us. Same story and same age that it started. The family is at a very different stage, but I remember how it felt like it was yesterday. Time couldn’t move quickly enough to get to the next doctor appointment and the next search for something that gave us hope – wait times were and still are ridiculous. It seems easier to live life when you have a diagnosis and a plan in place.

At Meghan’s last cardiologist appointment, he asked us how we were doing. I told him things were good. I actually said normal. Then I qualified it with, “Well, not normal by a lot of people’s standards, but our normal.” Meghan swims, she does her homework, she can more often than not go to restaurants with us again without feeling sick. She can walk around the mall. All things we took for granted before.

I’m finding that we need to continue to work on acceptance and living life. Things most likely will always be a different kind of normal for Meghan but there are still so many things to enjoy in our lives. The hard part is convincing her. She lives it. I just observe it and feel it with my heart with the compassion that only a caregiver can know. I still explain to others what Meghan goes through daily and see that they often don’t get it. They don’t understand the scope of it and how it shakes you to your core. Especially those that see bits and pieces of her life as a happy kid who does smile and laugh and have fun. She puts on a brave face that fools people. Every so often though, someone will observe some tears or pain she feels as she tries to conceal her inner emotions. A pain that knows anxiety and panic attacks are lurking in the background.

One thing to remember is that the world is constantly changing and evolving. Who determines what is the best path for anyone? What is normal? Do what you need to get through a difficult time and don’t regret that it may not be what everyone else sees as normal. Don’t stop searching and demanding and sticking up for yourself or the person you care for. Find your own normal. But don’t forget to live life.

This post originally appeared on Meg’s Story.

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