first & foremost, drugs.
i wanted to give an update, considering all of the thoughtful emails, voicemails & texts im having a hard time reading. my nightly IBD meds make it hard to focus anyway, but when you add any type of narcotic & nausea meds, it makes things worse. i promise i am not ignoring them & will get back to you when i am able.
THANK YOU for being patient. THANK YOU for calling. THANK YOU for letting me just cry it out & move on with my day/night. i hate people seeing me sick – including my mom & dad – RARE are the occasions i will ever leave my house to be sick at someone else’s & why i dont allow hospital visitors. im there to recover and appreciate you hearing my requests – with the exception of molly (hey girl, hey!) & mom or dad seeing me off to a procedure.
his guy had been my rock through every single procedure ive had. he’s doing work while i am in & out of the operating room.. taking his morning off to again, to help me out. id be lost without him keeping me sane through many bad memories of procedure rooms/anesthesia . how did i get so lucky?
my nightly meds make it hard to see small focal points of vision. this = no reading on phones.. but when you add any type of narcotic & nausea meds, it makes things worse. at the moment, my phone is not working & will not have a replacement until probably next week at best if they are able to repair. if not, new phone – thanks to insurance!
back to what we’re here for; an update, so far.
A) surgery went well, no excessive bleeding! everything was pulled out that needed to be, cauterized appropriately & shaved down as closest as they could be. it lasted just ~30 minutes. there was no prep involved except for fast for 12 hours before, which to an IBD patient that’s a major HELLLLLL YEAH in our books. they do this so that if/when you puke, there isnt much that will come up.
B) i got my results back yesterday (while in the hospital) that everything was benign! like he had seen in my pre-op appt, my tonsils were a bit larger than normal, especially one side. he was surprised they were not suggested out already – to be honest, they were & out of arrogance, i thought i could be superman & tough it out. and, my tonsils were really the last thing on my life that i needed to put first and worry about. i can barely hold down my job & did not want to risk losing it to have more time out of work. yes, i waited about (at least) 3 years longer than i should have, but, its done now & hopefully the infections will be too.
3) to be honest, i was thrilled hopefully physically breathe easier & not have to deal with chronic throat infections that each required antibiotics that ive started becoming immune too. at least a handful of times there have been instances that within 10 minutes, my throat becomes so inflamed, i cannot swallow & cannot breathe. obviously im a medical mystery, but the last thing i wanted was ANY unnecessary surgery. after the first night waking up in a panic trying to breathe with a throat that was closing rapidly, THAT was the moment i knew it was time to get them out. in fact, i was thrilled to get this process out of the way, when i met my ENT for the first time, i knew it was the right thing, though i was hoping to hear alternatives. he told me between 80-85% of people he sees, he turns away, as he believes it has to be necessary. he gave me 4 possible surgery dates (one-two days from then) & i began to panic – SO much to do at work & impeccable time (so sarcastic). i picked the last one, as he left for a 4 week vacation the day after my surgery. so, it was that week i saw him or Friday. i opted for the latter to get the most work done i could. it IS an easy surgery; but what only takes 30-45 minutes pending everything looks as expected, it can be scary, especially if you have had awful side effects to meds in the past or are new to the process.
post-op: the past few days, im willing to admit, were fucking hard. i though that meds would control a great part of the issues i would encounter & it would be a breeze. my immune system fought otherwise & decided to do an awkward Beyonce wave to all the BS i thought. when people asked, i responded honestly – with my pain tolerance i felt that i could handle it. ive had SO many issues with nausea lately, i hated that each part of the team pre&post op warned that nausea was the most common side side effect. i rolled my eyes & already became queasy. the doctor told me that within the first 3 weeks i would do one of two things – swallow the large, long scabs or throw them up. im not easily grossed out, but i nearly passed out having an image of what would be one of the most disgusting i would hear & would do.. and ive dissected my own poop on more phalanges than ive got. ive cried a lot, ive throw up A LOT & fallen asleep during many conversations. i still dont have voice at all, so i try to savor it & avoid trying to talk but people ask so many damn questions! lesson learn – patients with autoimmune disease dont heal normally. during my pre-op, my doctor said word for word “normally people need 2 weeks off of work to feel normal, but kelly, youre not”. i laughed, because he actually DID understand, and it put things into pespective for me. still though, i thought it would be a simple procedure.
i went home that next day & “home” home the following day. i even had the opportunity to attend a close family friend’s 2nd annual memory/celebration event – i was unable to last year because i was running my 1st half-marathon in Chicago! the memorial/celebration was just as beautiful as . we released balloons up to heaven & i stole a few extra to whisper messages to my friends that have passed, as well as the friends that desperately need prayers right now. jordan would want that – to pray for others who are sick.
i was okay at the hospital, only puked a few times coming out of the operating room, but returning “home” home, after things settled in my belly, i couldnt hold down my pills, pudding, applesauce, water. i had an AWFUL migraine, with the top of throat pain & with puking, i was throwing up blood from underneath my scabs now. i called my infusion center the next morning, along with my ENT office to try & find something else temporarily to get me through instead of the liquid pain med, as it only made things worse. i went in for some liters of saline & IV phenergan – and anti-emetic…. which is apparently in shortage in our area. enter my worst fear. i was more emotional than a dramatic participant in a dumb “reality show” – what did i come in for then? back & forth between me talking on the phone to the ENT nurse, my own GI infusion nurse where i was sitting in one of his chairs & trying to leap to the bathroom every so often to secretly yak, i couldnt deal… i didnt even have a voice to try and tell my nurse, but less the dr off the drug i needed we dont have…. so my infusion nurse kindly called them up & got my a suppository to help carry me over. which worked well, until my Crohns decided to be an asshole & change that course. i cant take my pain meds unless i keep my anti-emetics down & i cant keep anything down without food – much less receive an IV of it that seems to be non-existent in our region.
lastly, i want to share something personal that likely many of you know about me & also many of you face – whether you are a patient, a caregiver/loved one, or family/non-blood related family.. i have anxiety about being put under sedation.. not that i wont wake up, but when the sedatives are pushed in my IV, something comes out that i am unable to control even with extra nursing staff who help me meditate, breathe & calm my nerves. i tried my best & think i did a great job remaining positive throughout my sedation process. also leading up to it. many of you aren’t aware that i have issues going under/coming out of sedation. for some of you, you make think you know why, but it isnt that, it never was. it is rare but sometimes people cannot control their emotion, resulting in panic attacks or the screaming. its a total state of fear that just happens, something you have NO control of. and like any chronic illness, IT. SUCKS. it was better this time, but when i came to post-op, just like always, i was crying. this time, i didnt know where i was and the nurse was far from nice. she wouldnt look at me so i even tried Signing to her, even though i knew she saw me, i still pressed my Help button, because i might be in pain and unable to speak, but i can sure as hell press my call light even if youre 2 inches away from my bed. i tried my best to advocate & did all that i could, but still there were a lot of tears. props to the rest of my care team who were so kind & helpful. still though, some of me for the first time ever, was a little apprehensive since i want familiar with the sedation process. ive been under anesthesia before, why did this time make me nervous? you would not have known it, but this time i was scared. – for SUCH a simple procedure.
tonight was the first night i could hold down a little more than fluid. i did some mashed potatoes. it is SO hard to function without your daily meds knowing you will puke them up – & things are still pretty inflamed i cant swallow many or at all. yesterday, i began a large dose of steroids (NOT prednisone!!) that i will be taking every 4 days for a month (that with help with severe pain, to quote my bottle) – here is a recent pic from today – things are looking good & healing as they should. i scared myself a bit with brain fog thinking WTF is happening to my tongue.. until i realized i had some blueberry tea for lunch today. DERP!
thank you for helping me out with your encouraging words. love you all to the moon.