....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.

Silver Linings

Today was a frustrating day as far as dealing with POTS & our primary care physician. Hannah had her 14 year "well visit". I was very proud of her as she articulated her condition and gave the doctor a pamphlet that was made for pediatric physicians with dysautonomia patients. Unfortunately the lack of depth in knowledge led to frustration on my part as I tried to talk to the doctor about a couple specific concerns. One in particular is when Hannah has a "crash" like she did last week, she may need IV Fluids to help increase her blood volume & blood pressure. Our doctor did not understand this and argued that "Gatorade should be enough". She also insisted we get another neuro work up for symptoms that are clearly from her POTS, but the doctor just doesn't know enough about it to understand the various and complex ways dysautonomia can affect a patient. Here is the SILVER LINING... Dr Crosson (our pediatric cardiologist at Johns Hopkins) came through for us once again. I emailed her with my frustrations and she quickly responded with a plan. She has sent our pediatrician the report from our visit with her, but she agrees that she needs to have a conversation with her to get her up to speed and on board with treatment plans. She also told me that she is doing a special Ped Neuro Grand Rounds next week on POTS. She hopes to bring the neurologists up to speed with the complexities of dysautonomia/POTS. She also hopes to find a neuro that would like to start "specializing" in dysautonomia and taking on these patients. How amazing is that???
It is funny because I have struggled with this disorder for years, but when it became clear that Hannah was also affected...my mama bear instincts kick in. Now I am determined to do everything possible to offer Hannah optimal wellness. With that determination comes extreme frustration with the "bumps in the road", but sincere gratitude to those that have the same goal in mind.
I thank God for how he has provided Dr Crosson to walk through this with us. I pray with great anticipation that He will continue to use us to spread awareness of this complex disorder and find the best possible treatments so that both us and others affected can live life with "a full tank". :)

A Rare Gem

Over the years Hannah has probably seen around 30 specialists.  Very few have been note worthy.  We recently heard of a pediatric cardiologist at Johns Hopkins Hosp in Baltimore that had knowledge of POTS and the ability to diagnose.  However, she is not accepting new patients.  On a whim & a prayer, I emailed her directly and explained our situation and Hannah's symptoms and asked her if she would PLEASE see Hannah or direct us to someone who would. Dr Crosson promptly replied to my email that she would be willing to see Hannah & access her.  She told her staff to get us in ASAP.  While at our first visit, she explained that she understands the difficulty of finding a dysautonomia specialist and she could see that Hannah desperately needed someone to care for her with knowledge and perseverance.  Dr Crosson agreed to be that special someone for Hannah!  We were so very grateful!  She explained that this will be a long and complicated road at times that needs close monitoring & support.  She is willing to manage Hannah's symptoms and medications through email, phone, and office visits.  She layed out a clear plan to get Hannah on 3 meds by the end of summer. Hannah started the first medication (Florinef)  almost 2 weeks ago.   We have noted slight improvement of her symptoms and less "bad days". However, since starting the med she also had a very scary 24 hours of irratic blood pressures, nausea, and unable to function.  This latest episode came on during dance class and took approx 24 hours to subside.  We believe it was exercise induced, however exercise is crucial for POTS patients.  During this scary 24 hours I was extremely anxious as I watched Hannah's BP soar to dangerous levels and drop to near syncope levels. Dr Crosson was out of town at a medical conference.  I left her a voicemail and email even though her auto-message stated she would be unavailable until Monday and I should contact an on-call physician. I knew even the on-call physician would not be knowledgable or helpful.  Much to my pleasant surprise Dr Crosson contacted me within 15 minutes of sending her the message.  She completely set my mind at ease and gave instructions on how to handle the situation. I literally cried with joy & relief that we finally found a doctor who truly cares and is willing to go the extra mile.  A RARE GEM! I have communicated with her Friday, Monday, & today.  She is right on the ball.  She is starting Hannah on the 2nd medication (Midodrine).  This medication will help constrict her blood vessels to get better blood flow & prevent the extreme blood pooling she is experiencing. This is a tricky medication because it needs to be given 3 x a day exactly 4hours apart and must be completed each day before 5pm.  She can not lay down on this medication.  I will have to monitor her blood pressure closely on this medication to start. We are praying that we see significant improvement with the Midodrine and that she does not  suffer the bad side effects.  Your prayers are welcome!  We thank God for the answered prayers of finding Dr Crosson.  May God bless her!

Tuesdays with KJ!

Hey people! Today I'm going to tell a little about myself :) Im 12 years old. My favorite colour is green. I LOVE GIRAFFES. I happen to be a dancer 😏 I am currently homeschooled. I have a serious addiction to batman and one direction 💚💚 I will try to reply to any comments and questions!! Talk to ya next Tuesday!! 

   -KJ

Introducing KJ

Hallo! I am Hannah's sister :) I'm 12 :0 My favorite animal is a giraffe and giraffes can't get POTS. Thats soo weird. Unlike my sister and mother, I do not have POTS. Though it still effects the rest of the family. We need to eat healthier, exercise more, and drink lots of water. I will post something every Tuesday! Talk to u guys soon!! <3

  - KJ

New blog

ok so this is the first time posting on this blog!! :D oh ya Parrtayy (\ .__.\) ( /.__./) 🎉🎉 anyway back to the point ... So as u might have read earlier I have been diagnosed with P.O.T.S and this is going to be sorta a journal inside me and my moms journey with this syndrome :) I will try to post something as regularly as I can.        Xoxo :) 

Why "Standing Tall" ???

Hannah is a HUGE animal lover and we were fascinated to learn that Giraffes never have POTS due to their extremely tight skin around their legs.  The tight skin constricts their blood flow and forces it back upward toward their heart and brain.  Good thing, because that is a LONG way up for a giraffe.  POTS is a specific form of Dysautonomia in which the blood vessels (especially in our legs) do not contract in response to gravity's pull on our blood supply upon standing.  As the blood pools in our extremities our hearts race faster and faster trying to compensate for less blood flow to our brain.  If we do not sit down or change our position, our blood pressure often plummets and can cause a blackout.  Even when blackouts do not occur, we still suffer effects such as dizzyness, brain fog, nausea, & extreme fatigue.  Some of the treatments aimed at helping this specific problem are medications to help blood vessel constriction and build blood volume while others include increasing water and salt intake and wearing compression stockings.
Hannah and I are just fascinated by the giraffe and how they can stand so tall and for so long without feeling like we do upon standing.  We pray that we can continue to "Stand Tall" amidst our daily challenges. There is a lot to learn from these majestic creatures!

The Journey Begins...

Welcome to our blog!  We are a mother and daughter that are living with a chronic illness called Dysautonomia / POTS. We decided to start a blog in order to share our story, raise awareness/ advocacy of our condition, and to hopefully offer encouragement to other people who struggle with either our disorder or other chronic illnesses.  Please take some time to read our personal stories and more about Dysautonomia.  Thanks for walking this journey with us as we hope to share both good days and bad with you!  We believe in the power of prayer therefore we will be lifting you all up in prayer and leaning on the promises of our great God on our rough days.  Be sure to sign up to receive notification when we post an update.

<3 Kari