Wednesday, September 19, 2018

whoomp! there it is

i recently had a friend text me and say, i’ve noticed when your having a hard time you withdraw...said friend is  also a therapist and at times will analyze and call me out. but i don’t mind, she’s always right, and she always helps.
truth is i have been in a funk.
i have been in limbo with my own health and lungs status. two full weeks where i was possibly going to be admitted. back and forth (educated) decisions resulting in 'well let’s try this’, ‘it could be this’....all of which have been correct and i am seeing improvements. (yay.)
however, during that waiting period it is hard to be hopeful. actually, it's easy to be hopeful, but i hold back feeling that hope. because if i brace myself, the sting isn’t as bad when they say i "need to come in for a clean out.” so, i kept all my bags packed. i lived out of suitcases for two weeks in my own home. i didn’t want to unpack just to turn around and repack the next day.
the CF community has seen many difficulties recently. on being a key Cyster (@claire.wineland @clairesplacefoundation) of our community passing in an unexpected way. a woman of much influence and dedication to speaking openly and positively about our disease. she is a beautiful, strong light and it stung when her light left to shine somewhere else.
i watched as multiple friends were being admitted. it almost felt like there was a plague.
my psyche and mental health were struggling. anxiety, frustration and depression.
i simply am frustrated it’s not an equal ratio of my efforts and results. quite frankly it doesn’t even feel like a 10:1 ratio; efforts:results. this can be overwhelming. it can be tiring, in fact i am tired. everyday. all the time. i still take 2-3 hour naps daily. what used to be an indicator that i had an infection brewing, now seems to be part of a new normal. i only have about 5 hours of functioning before my body is like, “no. no more. i need to recharge if you want me to go on.” it’s like i live two ‘mini days’ in every 15 hours i am awake.
anyway, i kinda took an unintenional break from everything. commitments fell through. i haven’t written since july. i’ve been inconsistent in my social media presence, as well as updating you. you, who are so invested in mine and my families health. i appreciate you dearly, and i am sorry.
sometimes i am envious of my friends who have lung transplants. they have a new light to them. a look of relief. a release from the demands of frequent hours of daily lung treatments. i know lung transplantation by all means is not easy, and is not a cure. it’s basically trading one disease for another. learning to manage something new and something as grand as foreign organs in your body is no easy task. but sometimes i just want to breathe. i want to be able
to laugh without going into a coughing fit. i want to be able to rough house with my kid at any moment; instead of responding to his plea, “let mommy do a treatment first, then i can wrestle”. only to then be able to participate a few short minutes before being depleted.
guys this is open, this is raw, this isn’t my usual postings or my usual mental view. i have been in a funk. but this has been my truth. i am human. we are all human. i have bad days. we all have bad days.
but during my bad days, i have had many hours to reflect and my conclusions are often the same. gratitude. sure, i might not be seeing a 10:1 ratio of my efforts to improve my lung status, or even maintain where they’re at, but i AM alive. i AM breathing, even though i am also coughing. i AM watching my son grow up, even if the view is often while sitting next to my treatment machine. i AM making memories with my husband. i am here. and frankly what more could i want? nothing. my greatest blessing, my greatest gift, all of my gratitude lies in the fact that God does here my prayers...i am still here on this earth, still breathing, and that is a luxury.



  1. Amen. Praying for your one-day-at-a-time as I live mine. God is good all the time and all the time God is good!

    1. one day at a time. once upon a time, i lived my life one hour at a time. look how far i (we) have come!

  2. You said it.. It is hard and none of us could feel what you are going through. If being absent for a while is what is a natural response to your pain,sadness, frustration or... So be absent. The important thing is to live your life the way you feel it is good for you. You are brave but bravery is not a synomym of " always strong". God be with you and help you in your struggles

    1. I love your second to the last sentence. But the last sentence even more. God is always there; arms extended. we (I) are the ones who often move away *cough cough* withdraw.