You know your daughter has POTS when . . .

I’ve been told by some that they think my posts are sad — that they make them cry.  Please know that is not my intention.  My goal is to raise awareness about Dysautonomia/POTS — not to make you sad.  But the truth is,
POTS/ Dysautonomia IS sad in many, many ways.  So, while Lukah’s story may be sad, we’re also raising awareness about a rare disease and to me, that’s worth every tear that’s been shed while her story is heard.

On a lighter note, today, I thought I’d create a slightly- silly- but- completely- truthful- post called “You know your daughter has POTS when . . . “

Enjoy!

You know your daughter has POTS when . . .

1. Instead of asking her how her day was, your preferred greeting to her when you get home from work is “How do you feel today?” because you don’t want to know the answer to how her day was (because the good days are so few and far between.).

2.  For Christmas, one of her “gifts” was a 4 slotted weekly medication holder so she can better keep track of her medication times.

3. You’re so used to the sound her body makes when dropping to the ground during a seizure that you race to the room she is in when you hear even the softest thud. I don’t know how many times I have annoyed her with this one. She will drop a book or something and I am like a mad ninja checking on her within one second of the noise. If I am lucky, I will be greeted by a slight eye roll and comment like, “What? I just dropped a book ? “

4. Her typical water glass is the “Bubba Keg” that was purchased for our trip to the all inclusive resort in Mexico (so we didn’t have to ask for refills every two seconds since they use tiny plastic cups for beverages there).
It holds 52 ounces. She refills it three times a day.

5.  As you head out the door to the ER, you automatically grab a pillow and blanket because you know you will be sleeping on the couch in the room once she is admitted and you already know that room is  freezing.

6.You carry a medication list card in your wallet so you have it on hand for medical appointments because there are so many medications she is on you are afraid you will give incorrect information  (but you actually have the card memorized — it’s a “just to be safe” card in case you have a brain fart while filling out the paperwork.).

7.  You change batteries in the blood pressure/heart rate monitor nearly as often as you change your clothes.

8. You can glance at her and know she has a headache without even having to ask her just by looking in her eyes.

9.  Instead of a blizzard from DQ, her after dinner treat is a smoothie . . . with more than half of it being made from green veggies.

10. At the age of 15, she is on more medications than a ninety year old.

Artwork I made from the meds she takes in ONE day:

11.  You have educated many people on your child’s rare disease — including Doctors and Nurses — because they have never heard of it and don’t know how to treat it.

12. This is what you doodle while on a conference call:

13. And most importantly, despite the lack of progress being made to improve her quality of life, you never lose hope that someday there will be a cure, and things will go back to how they once were.

 Thanks for reading!