Meet Rebecca: P.O.T.S. Warrior

Kira Baron Photography WWW.KIRABARON.COM
Kira Baron Photography WWW.KIRABARON.COM

Rebecca is such a talented and kind person.  She has read more books than I could ever imagine, she has a deep love for music, she has an eye for classic and vintage style, and her sewing and knitting skills are out of this world.  She knitted me both a gorgeous scarf and the coziest blanket, and has made several dresses, including the dress she wore to my wedding.  And that is just the start.  I love getting glimpses into what she is working on and she is incredibly generous in the gifts she makes for others.  Truly a labor of love for the time and energy she puts into some of her creations!  To me, her diagnosis of postural orthostatic tachycardia syndrome (P.O.T.S.) is just one aspect of what makes her unique.  She is such a vibrant person who I am continuing to learn from.

I first met Rebecca about 6 years ago when dating my now husband, and before that had never heard of P.O.T.S. in my life.  Keep in mind that I had already completed the didactic portion of my Doctorate of Physical Therapy program by that time, and unfortunately was not in the minority of healthcare students or providers who knew nothing about this condition.  I’m sure it felt like a chore to educate yet another person about the condition she was living with and how it affected her life, yet I am so thankful that she was patient and willing to do so.  And because there is always more to know, Rebecca was gracious enough to do a Q&A with me to dive into her life even more!

Kira Baron Photography WWW.KIRABARON.COM
Kira Baron Photography WWW.KIRABARON.COM

(If you aren’t sure what P.O.T.S is, check out this post for some basics that can help give context to both my questions and Rebecca’s answers. )

Q: How long have you been living with P.O.T.S.?

A: I’m not really sure if I’ve had mild POTS for most of my life and didn’t know it but in January it will be at least seven years. That is when I got really sick.

Q: I know there can often be a long delay between when you have symptoms and when you get an accurate diagnosis.  How long did it take for you to hear a diagnosis of P.O.T.S.?

A: Between 23 month and 26 years.

Q: What were some of the other diagnoses you received before being accurately diagnosed with P.O.T.S.?

A: Here are some of the things I heard, all from different doctors:

  • Anxiety
  • “Are you sure you just aren’t taking on too much?”
  • “Maybe you should just take it easy…”
  • “I don’t know what/if anything is wrong.”
  • In response to uncontrolled weight gain even when I couldn’t keep food down: “You should stop eating cookies.”

Q: It seems like getting enough salt is always on the minds of people living with P.O.T.S.  What is your favorite salty snack?

A: McDonald’s fries. Half a box of Kraft mac and cheese also has 1680mg sodium when prepared to package instructions. That’s more than Top Ramen with no MSG.

Q: Do you feel you have a good support system living with P.O.T.S.?

A: My mom does an amazing job taking care of me but I think that she doesn’t have a support system.

Q: That is a really good point.  Caregivers tend to handle a lot.  Can you think of anything that might be helpful for your mom or others like her who support people with P.O.T.S.?

A: I think the people in their lives, that they’re close to, just need to realize that they probably need someone to talk to and that the caregiver won’t bring it up. Don’t assume that they’ve got it handled just because they make it look easy.

Q: What are your hobbies?

A: I watch a lot of TV because most days I can’t do much else. I read when I don’t have too much brain fog. I’m working my way through the Western Canon from Homer to James Joyce chronologically by author’s birth date to see how western thought has changed and I’m learning to knit.

Q: Do you have any goals you are working towards in the next few months?

A: I’ve learned through setbacks not to make goals like that but just to do the best that I can every day. On some rare days I can do a load of laundry and bake cookies; other days I can barely roll over.

Q: Where do you see yourself in 5 years?  10 years?

A: Realistically, I see myself in exactly the same place but I hope to have been well enough, for at least a short time, to go to Europe for a visit.

Q: What do you wish people you meet could know about you?

A: I wish people could know I wasn’t always this boring. When I had the energy I was the life of the party. I was always planning activities and running ahead of my friends telling them to hurry up. I was always smiling and laughing.

Q: Do you have a life motto?dory

A: Just keep swimming!

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