Saturday, October 16, 2010

Living the Moment

Before my POTS diagnosis I woke up in the morning, got ready for work, worked hard, looked forward to the end of my day, and counted the days or hours for the weekend to hit. I loved my career and enjoyed what I did every day, but I looked forward to my time away from work. I often see TGIF as someones status on FB, I've never seen a TGIM. Work is some place to make money to pay the bills and do the things you enjoy outside of work.

Work became something completely different for me after my POTS diagnosis. When I was hosplitalized I could barely walk from my bed to the bathroom without being completely exhausted, dizzy, out of breath and as white as a sheet. I became a "House" episode. My heart,lungs and brain all checked out normal (yes, even my brain). It wasn't until I told the doctors to check my heart rate and blood pressure laying down and standing up did my diagnosis become obvious. I was told my condition is rare, the treatments varied in each patient, and I may or may not recover. I didn't realize at the time how scary those statements should be to me. I was given several meds to try (some worked and some didn't), and a short list of things to avoid. The list made it pretty obvious that mornings were gong to be difficult, and I still chuckle at one of the items : Avoid having a b.m. in the morning. How am I suppose to do that, I've done my big business every morning for as long as I can remember! Most of my education I picked up from other POTSies, I don't know what I'd do without their knowledge and support! When I first returned to work there was a deep appreciation for the fact that I could go to work. Work no longer was I place I had to go to five days a week, but a place I get to go to five days a week. Believe me when I say it isn't easy. Every day I wake up nauseated, dizzy, and exhausted.

During this journey, I became connected with many amazing people who share this wonderful diagnosis. What I discovered was the majority of them have it so much worse than I do. Daily migraines, fainting (I have never fainted, only feel close to fainting), severe digestive issues, severe pain and fatigue, tachycardia and bradycardia, and weak swollen and discolored limbs. My friends can't work, and want to work so badly. They deal with sever chronic illness every minute of their lives, and we complain about a rough day at work.

In the beginning I had a deep appreciation for being able to work, but that has grown into something much more. I'm learning to appreciate every minute. Every word I speak, every communication I acknowledge can leave a life changing experience in someone I touch, no matter how small the event may seem. Even in chaos and exhaustion I have a choice as to how I use it. Sometimes when my classroom is being unruly, I'll close my eyes for a second and appreciate the fact that life is happening around me. The rules in my room are important, but how I enforce those rules is just as important. I'm looking less at the clock as a way to measure the end of my day, and more as a measure of what more I can do in the time I have left.

I've been given twelve more students in my class, and at first my attitude was this is wrong, I can't do it, and I'm not getting paid enough to do this. What I realized is that I get to have twelve more students in my room, they will change who I am and how I teach, and I have the opportunity to change and affect who they are. Is it wrong, YES! Developmentally kindergarten and first grade should only have 20 students. I can't change the state budget, but I can accept what I have and make the most of this opportunity.

I've also seen a change in my attitude about parent-teacher conferences. These conferences add two to three hours to my day. For those of you who are not in education, I get paid for a 6.5 hour day, not for eleven or twelve. I'm not given a stipend or extra pay, it's part of my job description. I've always done this part of my job grudgingly. A week of hard labor, and the hope of getting them complete without any parental conflicts. But this year was so different. I have such a supportive group of parents, and I love my students, so I couldn't wait to spend some one on one time with these amazing parents. This time I enjoyed the insight I received from my parents about my students, and feeling like we had connected as a team to provide success for their students was a joy! Last night I posted "joyfully exhausted" as my status because I knew every moment was well invested and worth the exhaustion I felt at the end of my day.

I guess my target audience would be those who are relatively healthy. Work doesn't have to be a prison sentence, "time served". There are people who are chronically ill who would give their right arm to be in your shoes. Try to think more about the time at work as opportunities to make a difference, and the people around you as precious moments to make a positive difference in someone. Many of my friends are alone and would love to be able to touch someones life (for some talking makes POTSies out of breath and dizzy, including myself).

For my POTSy friends, try not to waste precious time focusing on the can'ts. Dysautonomia is a thief, and has stolen our health and many of the things we enjoy in life. You have family and friends that need your heart, compassion and moral strength. Please don't let this disease steal the joy out of the moments you spend with others, make each moment count, because to be honest there's always someone out there who has it allot worse than you do.

Always inspired,

Psalms 126:5
Those who sow in tears shall reap with joyful shouting.


  1. aww i love the entry! and it's true! we have all learned so much more about our illness from each other than anyone else... including doctors!

  2. You are such an inspiration girl! This is a great blog. I love your outlook on things. I know that Dys has definitely in a big way changed how I view things! I once took going outside to rake leaves as an OH MY GOODNESS WHY ME Now I relish the time I am out raking those leaves... yes, raking leaves is so awesome to I relish in the fact that today my home has been clean, and I've kept it clean ALL DAY! It's not chaotic disarray! Well everything but my bedroom... we're still unpacking and organizing in But when I'm able to wash a load of dishes and UNLOAD the dishwasher without feeling as if I'm going to hit the floor before I'm done, or if I'm able to vacuum my living room and yes I may be a little winded, but I'm not out like a light on the floor... I definitely don't take these small things for granted anymore! So thanks for this blog! More people need to understand that we really want to do all the things we aren't able to do!