Hello! My name is Kelly, I’m a 29 year old Registered Nurse and I’m going to share my story with you. Please read this with an open heart and an open mind, as this is the first time I’ve shared about being sick publicly.
What is your story to becoming diagnosed with POTS?
My POTS story started in the last week of October in 2017. I also suffer from chronic kidney stones, so in the last week of October I underwent my fifth lithotripsy. Now, it being my fifth surgery, I was very used to the routine of recovery. This time I didn’t recover quite right, and was where my POTS journey began. I finally had to seek out my doctor when four weeks post-op I was still essentially bed bound, blacking out every time I stood up, had brain fog so badly I had no clue what was going on most days and fainting.
I've always disliked going to the doctor’s office because I don't feel like they take me seriously. Yes, even as an RN. But, since I fainted and ended up with staples in my head, I knew it was time to take my “poor recovery” seriously. I saw my PCP multiple times, had all sorts of tests and lab work done that were all “within normal limits”. (My 24 hour blood pressure cuff reading had multiple heart rate readings over 130, but since my 24 hour average heart rate was in the 90’s I was clearly fine, right?) I even pointed out abnormal readings and got shoulders shrugged and I was told I MUST have been doing something active for my heart rate to have gone up. Even when I replied that I did nothing but lay in bed and walk around, shoulders were shrugged again.
I was offered anti-anxiety medications and was told it was most likely a psych issue despite the fact that I was in tears from abdominal pain, fainting, having shortness of breath, tachycardia, chest pain and rapid consistent weight loss from so much nausea and discomfort. I was virtually bed bound for months.
Finally, I was referred to see a neurologist, but since I wasn’t taking “it’s anxiety” as an answer, I had already made the appointment two weeks prior. I did a lot of my own research to find answers because it felt like my doctor wasn’t going to.
A perk of being a registered nurse (RN), is that I know how the medical world works and was able to stay one step ahead. I was lucky to be able to get in to see one fairly soon too. With having some good connections in the “doctor world” I was able to have some strings pulled. Usually, I don’t accept special treatment, but I was desperate. I was very over being 28 (at the time), essentially disabled, with no answers.
This next doctor, the neurologist, diagnosed me on my first visit and we started on the journey to getting me better. It took several tries and a few months, but I felt heard and I felt like I was taken seriously here. We found that florinef works best for my POTS. I also drink pedialyte regularly and try to drink as much water as I can throughout the day. I still have many ups and downs and need adjustments along the way, but I’m finally on the right road.
How has POTS impacted your life?
Overall, throughout the process I had to give many things up, but I like to think I’ve gained other things in their place. I was an avid jogger, and I still can’t do that, but I have found a love of walking. I used to work out almost everyday, but now I'm not able to as often. I get tired very easily and have to "stay in" way more than I go out. All my plans are now up in the air until I know if I'm feeling up to them.
Are you able to work/go to school? What are your hobbies?
In my spare time I’ve picked up new hobbies of beading and other crafts and have decided to sell them to raise money for POTS research and awareness (check out KreativeKraftbyKelly on Etsy). I also scrapbook, because looking back at memories makes me smile.
I still work full time, but I have moved from being a floor/ charge nurse to being a Case Manager. This helps with managing my illness by having regular hours that require less physical activity. So far, I am feeling okay, and making it work. My passion is to help and serve other people, and I will do that until I physically can’t anymore. Even so, I love to craft for charity, which is a mostly sedentary hobby.
Do you have any other chronic illnesses? If so, what are they?
Some health problems I deal with along with POTS are chronic kidney stones, interstitial cystitis, hemochromatosis, asthma, ITP (had my spleen removed) and chronic migraine. I have been sick with autoimmune disorders as far back as I can remember. Every time a new one comes up, I make the life changes I need to and move on. And yes, it is much easier said than done. Though I try to stay positive, I still experience tears of sadness, frustration and loss.
I have an amazing support system that helps me get through difficult times, and picks me back up to my smiling and positive self. It is not a side I like to show very often, vulnerability is scary and I only let a select few in.
What piece of advice would you give to encourage others with POTS?
Advice I would give to others who have POTS is to listen to your body. It is so important to know it is okay to say “no”, those friends who don’t understand are either A. not your friend (yes, cliche, but true) or B. just need to be educated on what you are going through. It is hard sometimes to open up, but by being open and honest about why you can’t do something opens lines for understanding. (A lesson I’m working on doing myself).
What would you tell others who don't have POTS to help them better understand your condition?
What I tell my friends is that my body is essentially constantly running a marathon, and it feels it too. I tell them to imagine trying to make a cup of tea while on the stair master and that is how doing simple tasks feels for me when I have a flair. I explain that my heart rate goes up like I’m jogging when I am only standing. Once people have a basic understanding, sometimes I will let them know about all the other systems of my body it effects, like my stomach, my bladder, my brain and my heart. I am so fortunate in my life to have the most understanding family, friends and employers.
Why is it important to spread awareness of POTS & dysautonomia?
Everyone I have spoken to about my illness, including other healthcare professionals have many questions. It is so important to spread awareness to spread knowledge and understanding. Being told everything is “okay” when it clearly is not, was very difficult to hear. It made dealing with the illness even harder. Awareness will help doctors become more familiar with the condition and treatment to help POTS patients. Feeling awful and not knowing what is wrong is a very scary situation.
Thank you for reading my story. I hope it has helped at least one person. My instagram name is @kellyrose89, feel free to add me and DM me if you have any questions or need support.
Thank you for sharing your story, Kelly! You have already inspired so many people. The healthcare system is blessed to have you. Stay strong and keep fighting! :)