Real People With Dysautonomia: Leaya

Imagine moving to the Caribbean to begin your life as a student.  Armored with a passion for animals and ready to learn all you can about veterinary health.  Then, suddenly, you start to experience episodes of syncope (the fancy word for fainting). 

That was the reality for Leaya (pronounced “Lee-UH”).

Living in Grenada was also my first time living outside of the United States for an extended period of time and in a warm climate.  Within my first month there I started having once or twice a week syncope (fainting) or pre-syncopal (near fainting) episodes and I didn’t know why.  I was staying hydrated, but it never seemed like enough.

It wasn’t just the syncope she noticed.  There was gastrointestinal upset, loss of vision, body tremors, and the inability to concentrate.

I noticed that every time I went to the ER on campus and they gave me IV fluids, I would feel significantly better for a few days to do my coursework.  But the cycle would repeat itself.  It continued for 5 months until I had to take medical leave from my first graduate school.  Looking back, I realized I had a few pre-syncopal episodes prior to going to Grenada, but they were so spaced out I didn’t connect them to anything.  Discharge paperwork always said anxiety or presyncope, but no one ever wanted to investigate it further.

We know that there are often a lot of comorbidities that go along with POTS, or postural orthostatic tachycardia syndrome.  So, we asked Leaya what her known diagnoses were.

I have a number of chronic illnesses.  I have POTS, Gastroparesis, Orthostatic Intolerance, and Mast Cell Activation Syndrome (MCAS) all under the dysautonomia umbrella.  I also have glaucoma, migraines, GERD, arthritis, Chronic Fatigue Syndrome (CFS), adrenal insufficiency, vocal cord dysfunction, severe allergic asthma, sciatica, ADD, and a few mental health diagnoses. 

Holy cow, Leaya!

I was one of the fortunate ones that received my POTS diagnosis early in my adult life at 24.  The first cardiologist I saw was able to give me my POTS and Orthostatic Intolerance diagnosis along with a medication that has worked for me.

POTS, or postural orthostatic tachycardia syndrome, is a condition affecting your autonomic nervous system.  It causes symptoms such as rapid heart rate, dizziness when standing, syncope, and more.  

While she had a formal diagnosis, she still hadn’t gone through the usual testing that many do to get it; a tilt table test or a holter monitor.  It would be several more years before she had these tests to confirm, but she found that she was still able to manage her symptoms.

I am diligent about finding a quality care team, so I didn’t experience too many denials. The exception is the ER doctors who dismissed my symptoms as anxiety.  While I have anxiety and panic attacks, I knew the ER doctors weren’t taking my syncopal or pre-syncopal episodes seriously.  Getting my POTS diagnosis was a success because it was the first time my tachycardia and syncopal episodes were given a reason for occurring other than anxiety.

Because of her health problems, Leaya had to quit school, leave the Caribbean, and ultimately move back to the states.  Once she started to get a handle on her illness, she enrolled again in a veterinary school inside the state.

The lack of quality healthcare resources in rural Alabama was definitely a major hurdle in my healthcare journey. I couldn’t drive a few hours to Atlanta or Birmingham for regular doctors visits while simultaneously being a full-time veterinary student.  The doctors I saw in Alabama didn’t take my concerns seriously when I described the severity of my symptoms and the poor quality of life I had.  It was disappointing and infuriating to have what I now know to be gastroparesis misdiagnosed as IBS with doctors unwilling to test to confirm gastroparesis.  Sadly, I had to take medical leave for the second time because it was overwhelming my body trying to keep up with rigorous schooling.

Making the decision to leave vet school a second and final time was honestly heartbreaking.

Grief can be experienced by realizing the life you wanted to live doesn’t match what you are actually living today.  You grieve the idea of what you wanted your life to be as you learn to accept what it will be.  Sometimes there can be good in it.

That decision allowed me to leave Alabama and move to Florida where the healthcare opportunities were better.  So many doors opened for me to find the best medical providers in the country.  It allowed me to find a dysautonomia community. 

The quality healthcare helped me learn to be in tune with what’s happening in my body and narrow down what’s causing certain symptoms.  

Living in the Tampa Bay, Florida area was a move she found was a great decision for her.  She called it the “dysautonomia jackpot” in terms of the number of providers there who specialized in dysautonomia.

I have a solid care team with the best Dysautonomia providers in the country, as well as local organizations that support dysautonomia like The Dysautonomia Project in Clearwater, Florida.  Receiving the book “The Dysautonomia Project” from my cardiologist Dr. Salazar in St. Petersburg, Florida was a win. I felt confident that not only would Dr. Salazar be able to prescribe meds, but he was willing to explain my condition to me.

Leaya has worked to make her life as “normal” as it can get.  She’s been able to find ways to work that will allow her to accommodate her chronic illnesses.

If I had to equate work to a relationship status I’d say “It’s complicated.”  I’ve tried working a number of full-time office jobs since taking medical leave from grad school, and it feels near impossible to keep up with full-time work while managing my health at the same time.  I’ve had employers in the past who were very understanding, and others that were not supportive at all (actually quite the opposite).  

I work multiple part- time jobs.  I pet sit, which allows me the flexibility to take on more work if I’m feeling well, and helps me stay on top of my cardiac conditioning.  I can scale back, when needed, if my health isn’t doing well.  I also work as a social media marketing manager for a local psychotherapy and wellness practice.  

Don’t think Leaya has given up on her passion for animals.

I’m actually planning to make a career change and become a mental health counselor working with animals and people with chronic illnesses and disabilities.  It’s a growing profession called veterinary social work and is a perfect blend of my personal and professional backgrounds.

Managing your chronic illness symptoms while trying to work and lead a normal life can be the biggest challenge you will face in your journey.  Well, actually getting a diagnosis is probably the hardest, but once you get that diagnosis it’s all about managing symptoms.

I take a variety of different medications and supplements to manage my conditions.  I make dietary modifications for my gastroparesis, wear compression socks daily, I exercise in moderation (swimming is my favorite), try to get enough sleep, and stay extra hydrated.  I drink one NormaLyte PURE packet per day, sometimes two.  If I know I’m going to be traveling or have been having GI issues, I will get IV fluid infusions as needed.  I also have a fantastic medical team I work with in the Tampa Bay area, and my husband is instrumental in other caretaking tasks when I’m in a bad flare or out of spoons.

Having a support system is always important. 

My husband, my best friends, and my dog, Sally are my biggest supporters.  I’m grateful they have taken the time to educate themselves about my conditions and are always there whether it be a listening ear, a shoulder to cry on, or helping with daily tasks around the house.  I struggle to keep up during bad flares.  

My husband has known me for years pre-diagnosis and has been there through all of the ups and downs of my health journey.  I never really had to reveal it to him and he’s really stepped up to become my caretaker since there’s a lot I struggle with on a daily basis. 

Having met Leaya and her husband in person, you can feel how genuine they are.  His love for her shone through our conversation.  He is passionate about learning how he can help.  Leaya was lucky she met his before her diagnosis and never had to “reveal” it to him.  But sometimes that isn’t always true with romantic and friendly relationships.

When making new friends, I usually reveal my health issues early on because they will quickly realize how limiting my health is.  I’m no longer able to do a lot of the usual activities 20 and 30 somethings usually do, or even activities I used to do.  I’ve also learned that friends who are not supportive or understanding are not the kind of people I want in my life anyways.  

Even though I’m introverted, I’m a lot more outspoken about my needs than I used to be.  Because if you’re not going to advocate for yourself, then who is?  This philosophy has helped me develop some close quality friendships in my adult life, including some friends who also have Dysautonomia.    

This brings up the question, though.  What do you do for employers?  Do you reveal your illnesses or do you keep it to yourself?

For employers, I get a read to decide how much I share ahead of time.  Most have been very supportive because I keep open lines of communication.  I share with employers that I may need some schedule modifications to accommodate frequent doctor’s appointments, but I don’t go into detail.  I also don’t work in environments anymore that I know may make my symptoms worse.  I’m currently working part-time with a flexible schedule since I’m unable to work full-time with the frequency of my doctor’s appointments.  

Leaya calls herself an introvert, but I find she’s the most extroverted introvert I’ve met!  In her “spare” time, she can be found volunteering time at local animal shelters, fostering animals, and leading peer support groups.  Though, with her chronic illnesses she’s had to change her hobbies over the years to accommodate her energy levels.

In all honesty, on a bad flare day my hobby is sleeping because I never feel rested no matter how much sleep I get.  But that’s not every day for me and I’m grateful I can still do some of my other hobbies.  Some of my current hobbies include spending time with animals, gardening, listening to audiobooks and podcasts on personal development and personal finance, and creative art projects including interior decorating and fashion.  

If I had my full energy and the Florida heat wasn’t an issue (yay heat intolerance), I would be enjoying everything Florida has to offer.  I would be swimming, horseback riding, traveling, going to the beach, and start scuba diving again.  I also used to model professionally and have always enjoyed creative endeavors so I would continue to pursue modeling too.

Her positive outlook on life is going to help pull her through.  She doesn’t get to do many of the things she once did, but listen to this perspective.

I’m Christian so there are some Bible verses I go back to for inspiration.  I live by the phrase “the only constant in life is change itself.”  I’ve realized through all the setbacks and adversity I’ve been through, I’m not going to let it stop me from reaching my dreams.  Even if the original dream has to be modified.

Leaya, anything else you want us to know about you?

I would just add for those struggling that things will get better.  Opportunities change, people change, circumstances change, and everything changes over time.  It’s just a matter of time until you find out the purpose of that change.  

I highly encourage people to seek out connection with others.  Whether it be family, a significant other, or even Facebook groups.  Groups have been a huge part of my healing journey to find other people in “my tribe”.