I(Angie) am honored to be able to introduce you to a beautiful warrior named Kirsten. Please read what she has to say about living with POTS and autoimmune. I will let her take over this post from here, enjoy. Thank you Kirsten for sharing your story with all of us.
I currently have been diagnosed with POTS disease, with suspicion of an underlying autoimmune disease. On a daily basis I deal with; debilitating fatigue, dizzy spells, brain fog, blood pooling, headaches, full body aches, trouble walking, extremely low blood pressure, and orthostatic intolerance.
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I was supposed to leave on vacation to Boston the next day. But to my dismay, my Cardiology appointment did not turn out as expected.
For nearly six months, I hadn’t felt like myself. From migraines and throwing up, fevers every day, debilitating shallow breathing, and an unexplainable sense of constant dizzyness- I knew something was severely wrong. But as tests came back negative after negative, I tried to push the symptoms aside- and adapt to the mindset my Doctor’s encouraged “It must be from stress.” Though my body screamed at me to listen, I valued my doctor’s opinions and let time run it’s course. However, I was experiencing something of a much greater magnitude than I realized. You would think that a large bald spot with thinning hair and the struggle to communicate words appropriately, would be a sign enough. But when you’re 24 years old, have worked endlessly to create a career you love, and pursue an education– while simply enjoying the freedom of your early twenties- you tend to think that any negative result is definitive and you must have developed hypochondira along the way.
But finally, I received validation from a Nurse Practioner, that made me reevaluate this state of mind. “You need to be admitted.”
The Nurse practioner quickly left my room, and brought in the Doctor who read the vitals I had acquired from my treadmill test. The Doctor took a moment to read the notes gathered from the test. “You were barely 10% through the test, and your heart rate elevated to 145 BPM, and your Blood pressure dropped to 80/40- which required us to put you on oxygen. This is far from normal, and the hospital can run more extensive tests on your heart to rule out any potentially life threatening conditions you may have. That combined with your fevers and hair loss, is a clear sign that your body is telling you something.” It was hard to process that someone was finally acknowledging something was severely wrong with me. It had been a grueling 6 months of questioning my sanity, and to now have a piece of the puzzle, was frightening and confusing in itself. I called my Boss immediately after my appointment for advice if I should still try to take my long awaited trip. She had been a huge part of witnessing my decline in health, and knew how much I needed to get away from the medical system failing me. Her words swayed me to take this new piece of information, and run with it.
After hours of deliberation, I entered the hospital. Staying for a total of eight days, I quickly became known as “the Doctor House” patient- even sparking the interest of Chief of Staff, who signed his name on my file to ensure I was taken care of. I walked around the corridors of the hospital with him multiple times, as he watched my heart rate intensely elevate to 170 BPM and a astounding 190 BPM as I got out of bed. From witnessing this, the team of Doctors were able to conclude it was likely to be POTS. In August of 2017, I was diagnosed with POTS from a tilt table test. Later this year, I plan to continue this journey at UCLA for potential autoimmune hindrances as well.
WHAT HAS HELPED & TIPS
Wow. It is a crazy journey, friends! Buckle up, and get ready to take notes, and really– REALLY acknowledge, that this condition is debilitating in nature- but the growth you gain as a person, and the challenge, is something very rewarding.
It’s been six months since my diagnoses, and I’ve learned so much to really assist in the management of this condition. For me, I wanted to ensure that I was giving my body every opportunity to feel good, while fighting a chronic illness battle. After much research, I decided to become Vegan to know what I was fueling my body with, where it came from, and limiting toxicities and antibiotics from entering my system.
On top of my change in diet, I geared all of my recipes to be beneficiary for POTS. This included high sodium meals with the ability to create multiple dishes from one. The idea is to alleviate the cooking time for those struggling with Chronic Illness, but fulfill the desire to fuel their bodies appropriately.
I TRULY believe, that this has helped my condition immensely. There are still up’s and down like every chronic illness, but becoming vegan and producing high sodium meals, truly has cultivated a healthier lifestyle for me. II really cannot stress how detrimental it has been toward my health, and how fun this journey has been!
HAVE YOU FOUND SUPPORT IN DOCTORS, FAMILY, FRIENDS?
It’s a really difficult question to answer, because all people respond differently. You become aware over time, that people don’t quite understand the magnitude of how debilitating this condition can be.
But then- there’s those who take the opportunity to learn and grow with you. And those are the people that I’m in awe of. For their compassion, willingness to help, and desire to connect to you as a support system. It’s a great reminder, that there are people who will be there for you in real life- but amazingly enough, even online! There is a growing community of those who have been diagnosed with POTS and other dysautonomic conditions, and let me tell you- it has been overwhelming how strong this community is as a whole. Your roots, are where you decide to make them. And I highly suggest family, friends, and reaching out to those who can truly empathize living with a chronic illness. I couldn’t have done it without my strongest advocate- my mother- who pushes every boundary to get answers, my father- who constantly checks in on me, my boyfriend- who I adore more then words can express, and my best friends- (Robin, Emerald, Kiana, Robyn) for pushing me, providing me with laughs when I’m in tears, and constantly checking on me. And finally my dear friend Alex, for providing me with so much support, education, and creativity for Vegan dishes that reach other’s tummies. These people are my roots, and hold the largest part of my fast beating heart 🙂
Disclaimer: The words in this post are not the opinion of Our New Harmony Blog, they are the authors own experience and thoughts. We are not here to diagnose you, that is a health professional’s job. If you decide to make changes in your own life, do so with the help of your health care provider.