<-- Still Got me LOCKED UP! Mantras can be a powerful thing. Originally used in Hinduism and Buddhism, a word, phrase or sound is repeated to reach a deep state of meditation. Mantras have been translated into endless religious and spiritual practices now and are often used as a tool in everyday life to concentrate or focus and express ones intention. Over the last year or so I have picked up mantras of my own that have helped me get through tough times.
1. "Just breathe".. well besides being a huge CF thing in our community, it's quite obvious why this one resonates with me!
2. "Everyday is a gift".. I don't often use this one in distress but it's one that I've learned from other transpantees and understandably everyday is literally a gift from an organ donor. I felt very connected to this mantra immediately and will probably feel even closer if I'm given that gift one day.. but shouldnt everyone live up to this mantra, even without physically being given an organ? Everyday we get to wake up and putting all outside distractions or stressors aside.. We are alive. We are able as humans, to consciously decide how our day is going to go based on how we treat it...so WHY NOT treat it like a gift?! APPRECIATE it, and SHARE it with the ones you love.. and sometimes during really rough times, i wake up in the morning SURPRISED as shit that the universe has given me another gift of living today!! I don't particularly use this mantra when in distress but I do repeat it to myself or others to enforce positivity and perspective when I can feel stressors or negativity energy nearby.
3. "Keep Going".. this has been my go-to lately in times of "HolyShitBatmanWhatsMyBodyDoingNowJohnIThinkWeNeedToGoToTheEmergencyRoomCallMyParentsIMightPassOutDidMyLungJustCollapseNoWaitIThinkItsStillThere" moments. 🤦
I used to repeat "I'mOK" to talk myself down but I found that i was unable to slow myself down to breathe. So when you find yourself just yelling "I'm OK" 5000 times in a minute on the bathroom floor, at some point you realize it's not soothing you, you are actually getting more anxious and you definitely look and feel like a complete lunatic. Sooo yea.. that mantra doesn't work so well for me. but "keeeeep gooooing" is more phenetically pleasing and allows me to inhale and exhale at a rate to sooth my crazy anxiety when I'm sobbing like a lunatic on the bathroom floor. Which brings me to my main reason for this post...
"keeeeep Gooing" is the mantra (along with my husband and parents of course) is what got me up off the bathroom and back into the hospital ER early this Sunday morning at 230 AM. I admit that I didn't repeat this out loud much, because I was in respiratory distress and couldn't really talk/walk or do much of anything but try to move air in and out of my lungs. But In my head "keeeeep Gooing" was on full blast. I'm talking like when you hear that old school song that you never forgot all the words to so you just drop everything and blast your speakers, bass is thumping and your dancing like a fool Cause that's your jammm!! You know?? Well yes.. "keeeeep gooooing" was on full blast for the car ride in my head to drown out the sounds of silence, labored breathing and whatever sounds my lungs were making. They were singing a song that mimicked a relentless sqeaky dog toy and a freshly poured bowl of rice crispies... as I snap crackled and popped all the way to the hospital 1.5 hrs away (where they could accurately treat me).
"Keeeep going" as Johnny wheeled me into ER and acted as my voice while I concentrated on breathing and nurses pump the oxygen up to 6Liters.
"Keeeep going" while they push the "Trinity" of high dose IV solumedrol into my port and give neb after neb of Albuterol and atrovent to stabilize my breathing.
"Keeeep going" as they hook up EKG after EKG (I've had about 6 in a 24 hr period?!)
"Keep gooooing" when they draw viles and viles of blood for testing then come back to do more bc some didn't hemolyze. 🤦
"Keeeep going" when Im required to spit, pee, and poop in cups all day for testing... The sputum and urine is pretty standard but I feel bad for the night nurse who had to collect my shitty gift I left her. Get it? SHITTY gift! 💩😂
I am admitted and stable now on IV steroids every few hours to keep my airways open while we continue the day of tests. My doctor was just in and we have a plan to keep me comfortable while we continue to monitor and do more tests to rule out anything we can be missing like embolism, structural changes to my lungs or port infection. A few of my labs levels were off as well (high potassium) and my blood pressure has been super high so I'm slightly concerned about my kidneys with all my medication but we are monitoring fluids closely and I had a fabulous drink to poop out some potassium today. Yayyy.. more poop talk! Until we find some answers to figure out what's causing these changes... I will just "keeeep gooooing"!!