....Wednesdays With KJ?

Hey! Hi! Hello! Hallo! Hola! Bonjour! Yo! And all that jazz. Anyway, I didn't post yesterday because 1. I wasn't feeling well and 2. I forgot (yes I know you're mentally punching me) So I'm going to post today. IT IS ONLY A ONE TIME DEAL. Currently, I'm trying to tan (not working) because its 85°!! I'm grateful :) I hope you guys are either having a great SUMMER or at least almost. I don't have a topic because no one comments....so it's short. BYE

                                         -KJ

Mowing the Lawn

We had a GREAT Memorial Day weekend! Dan took the girls to visit his family in Buffalo, NY while I stayed behind to enjoy a visit from two of my oldest friends! It was a cooler (low 70's) weekend and it was extremely restful just hanging out with friends and having the house to ourselves. Yesterday we walked around the Inner Harbor all day!! I was so happy to be feeling great! (*see pic).
After dropping Sarah & Sharon at the airport this morning, I came home to a quiet and empty house as Dan and the kids have a long drive home today. I decided I wanted to surprise Dan and mow the lawn. Although I used to mow the lawn growing up as a child, I have RARELY mowed the lawn since being married. (Yes, Dan takes great care of me :). I put on my iPod and was feeling very excited about being outside, getting some exercise and accomplishing a task that would alleviate Dan's load this week. After about 10 minutes of mowing, my excitement diminished as my body began objecting to this whole idea. My muscles throughout my body began to ache and burn, I began getting more breathless, and each passing row felt like I was climbing a mountain. I am a determined person so I pushed through for as long as i possibly could. After doing less than half of our lawn, I couldn't do another square inch so I stopped to take a break. After drinking a sports drink and sitting for several minutes, I decided to take my blood pressure & pulse since I was still feeling very symptomatic. You can see my reading below (pic 2) . BP = 95/50 HR = 170.
This explains exactly how I was feeling. Weak & dizzy, yet feeling like I was running in a race. This was one of those moments when my mind tries to argue & reason with my body. My mind believes I am much to young and strong to limit my activity and be unable to mow a lawn. My body screams... Listen to me!!! Know your limits!!!
I managed to recover and stubbornly finish mowing the entire lawn by dividing it into 3 sections with breaks. I am so glad I did it, but it was another wake up moment for me about what the future may hold. I hope I do not pay for my stubbornness with a "crash" just as my family comes home! I can't wait to have them back and give them hugs!

Precious Moments...

Wow... The heat has arrived in Maryland!!! The heat exasperates our symptoms so we each had a bad day this week but overall I was very happy that we were able to manage our symptoms. I found great comic relief today when I walked in the kitchen to find Addison (6yrs old) taking the blood pressure and pulse ox of her dolls. She said her American girl doll "passed out" :). It always amazes me what can become "normal" to little ones. Thanks for the warm laugh today Addie!

Tuesdays with KJ

Why hello everyone ;) Today I will just say things I am happy about. Tomorrow is my last day of school!! My dance recitals soon!! I feel athletic!! It's breezy!! I get to swim this weekend!! These are just some random perks of my life right now. Hannah is doing ok :) I will talk to you guys soon! PLEASE COMMENT QUESTIONS!! :0

-KJ

A look inside...

The hardest thing to accept about my dysautonomia is:
I have had a hard time slowing down. My personality and chronic illness don’t go well together. In my head I want to organize, workout hard, volunteer, do projects, go to the park, work my business and have lunch with friends. But my body fails me when I try to keep pace with the buzzing busy people around me.  Because my symptoms wax and wane, there are days where I feel good and ready to conquer the world.  I begin filling up my calendar and taking on more projects, etc.... inevitably, rough days are just around the corner when I can barely find the strength and energy to take care of myself and my kids and I get overwhelmed with all of the things I've committed myself to.  Then the guilt kicks in and I begin an inner dialog that can completely destroy me.  I am so thankful that I know Christ and HIS truths.  It helps me get through the times when I listen to my inner dialog or what the world tells me I should be doing.  I constantly need to prioritize and re-prioritize my days to be the best me I can be... even if some days that may look "lazy" to others. - Kari

The hardest thing to accept about my dysautonomia is:
" I am not able to participate or be as active as I would like to be because my energy level is so low.  Some days I can not complete dance class (and I love to dance!) or make it through a day of school without feeling like I'm about to die.  MORNINGS. ARE. TERRIBLE!  I would love to be outside doing things with my friends, but I can not handle the heat." - Hannah

Harvard Senior Shares Very Thought provoking words...

A Harvard senior speaks about her struggle with POTS and embracing our "former" selves...

"Addressing an audience of students and staff during Morning Prayers in the Memorial Church, Jillian Lubetkin, class of 2013, recalled how, earlier in her life, dancing made up her entire identity. “Dancing was what I did,” she said. “It was who I was.”
But when she was a senior in high school, that intuitive ability began slipping away. Diagnosed with postural orthostatic tachycardia syndrome, an autonomic nerve system condition, Lubetkin was “robbed of her passion,” and became “a girl who danced no more.”
Deferring her first year at Harvard, Lubetkin initially despaired when she realized she was now a “former” dancer. But while she may no longer be able to perform, Lubetkin said choosing to let go of that former self, while still celebrating that former identity, allowed her to reconnect with the creative spirit that made her want to dance in the first place.

“My passion for free and authentic expression — that very passion which attracted me to dance in the first place — still lives,” she said, during the first in a series of “Senior Talks” on April 30.

“Life will make ‘formers’ out of all of us at some point,” she said, adding that it would be reductive to suggest that loss is a gift. “But I can say that letting go … bestows upon us the freedom to sculpt new selves.”
- HARVARD GAZETTE, May 17, 2013

An In Depth Discussion of POTS/Dysautonomia...

A great in depth scientific lecture on POTS/Dysautonomia. I learned so much technical information! Most of you will probably not want to watch it as it is 2 hours long and very detailed but I wanted to share it with those of you who may be affected with dysautonomia. Knowledge is POWER when it comes to our health. I learned several new treatments we may implement as well as more details on what is causing our symptoms.