Every two years, Dis-ease tries to take something else. I’ve noticed a siginificant downward shift in terms of my capability-a solid 360 degrees and down spiral. Yet, I know deep down that if I didn’t fight to function continuously while (resistantly) learning to balance rest-but not resign to it-I’d already be bed-bound or dead. I can feel its disappointment whenever I choose to walk-even though I have to think more than any one should need to in order to do it some days (but nobody can tell), or my bones feel broken and I don’t get how they’re still moving. I can smell its tears-like I’m arm wrestling it into submission every time I cook or make something with hands that feel weak and I don’t know how I’m gripping anything between fumbling it. It gets cold feet each time mine are ice blocks or on fire with dying nerves-whether I’m looking for new auditions from my bed or I’m at one in person. I can feel its knees buckle when mine Dance though they shouldn’t be bouncing. And damn, I can feel it get more confused than I am every time I choose to write despite the fog and the feeling that my brain is melting and I don’t know how I’m thinking. Part of him goes away whenever I go away to another city or country and prove that if your world feels like it’s falling apart, all you have to do is make it bigger-find a new shell and keep crawling. A piece of him dies every time it tells me that I want to die, but I make another goal for when I’m 30 or visualize who I’ll be when I’m 60 instead. This dis-ease is trying to take more of me away this week, and I’m not going to let it. I just don’t know If that means I should listen to my body and rest or defy it and go, go, go. 💚
Location: Sedona, AZ
Hi y’all, I are selling T-shirts to raise money for my upcoming #surgery
in Maryland. The shirts are $25, and proceeds go towards travel, medical, and other needed expenses. Those of you w/#chronicillness
, and/or #raredisease
know the struggles of traveling for medical treatment. Unfortunately, Texas is no different. No specialists, have to travel. Please #buy
a shirt, #share
this post, and help me get to Maryland! Link is in my profile #fundraiser #fundraising #ehlersdanlossyndrome #osteogenesisimperfecta #addisonsdisease #avascularnecrosis #butyoudontlooksick #chiari #dysautonomia #gerd #invisibleillness #invisibledisease #mcad #mcas #nervepain #reynauds #spoonie #spoonies #spooniestrong #tmj #vertigo #zebra #zebrastrong #zebras
He takes really good care of me. He cooks, cleans, does laundry, takes me to doctors appointments, carries me, makes me smile, and more. We were only dating for 2 months before I got sick. And he stuck with me the whole time 💙💚 also the night I got sick he told me he loved me so we joke that I got love sick and never got better 🙈 This isn’t the life we wanted but we’re trying to make the most of it and hope for better days to come.
I had to have my shunt tapped for the first time yesterday. Was so proud of how well Mason handled himself to have to watch them do that. They have to put a needle in between the ribs, enter the shunt, then run it down to my spine. He checked the pressure, which was high. So he pulled csf off to bring the pressure down and collect a sample. The pain became so severe low in my spine. He is finally listening to the geneticist concerns that the cord is tethered. He finished up, then went over a bunch of tests he wants to order. He looked back at Mason to ask him "are you doing ok buddy" as I lay getting cleaned up, I'm kind of glad at that moment him and I couldn't see each other. Mason tells him he is fine, and Dr. responds "I really hope your mom's going to be ok too" my heart sank. He never says stuff like that. I have only seen that look on the doctors face now for the 3rd time. It's always been when a tornado is hitting. I sit up to a low pressure, spinal headache from the procedure. The 2 hour drive I had to then make, feeling so sick, and a 12yr old in the passenger seat. He wants new mri's, xrays, swallow study, and so on. New diagnosis added of a Neuro form of sleep apnea. #thisiswhyourstoriesmatters #shuntlife #shuntales #chiari #syringomyelia #eds #awareness #keepsharing #nomoresilence
So some of you know I've been dealing with some serious pain and more for over a year. It's been quite the ride and I don't expect to get off it anytime soon. I'm at Stanford's pain management clinic getting an epidural blood patch to treat a suspected cerebral spinal fluid leak by one of the top CSF specialists in the country. 🙏😬Fingers crossed.
Endlessly thankful for the love and support I am so lucky to receive from family, friends, peers, and professionals. Thank you for being patient w me, for sharing your strength with me, for listening to me and allowing me to be vulnerable. You know who are you, and I hope I can be as good to you as you've been to me. #csf #chiari #neurologicallydisordered #invisibleillnesses #fuckitheregoesnothing
Happy 3 year #brainsurgery
anniversary! So crazy to me. 3 years ago I weighed 125 lbs, I was so small and weak. Could barely take care of myself and was at the lowest point in my life. I thought my life was going to be over.
Even though they took some of my skull, some stuff around my brain and removed part of my vertebrae...you better believe I’m still kicking! Today I weigh a HEALTHY 160lbs and I’m stronger than I’ve ever been. DO NOT let anyone ever tell you that you cannot so something or overcome life changing obstacles. Cuz you got living proof right here! #chiariwarrior
Yes, I let her pick up the "berries" but not eat them. She then brings them to me. And I let her, because she's independent, and it helps her work on dexterity and figuring out how to do things on her own (in this case, how to army crawl carrying them). #spinabifida #hydrocephalus #chiari #clubfoot #tubie #LOVED
The other day I attempted to interview a patient. He immediately started laughing and said, “You? Is this a joke? You are my doctor? You have tubes sticking out of your chest and all over you. You should be in the hospital. You aren’t healthy. I don’t want you to be my doctor. You look like you are dying”.
I must admit after my attending took over, I made my way to the bathroom and cried. I cried like I never have before. I cried bc after almost 8 years of fighting for my life to be someone’s future doctor one day, I was automatically dismissed in an instant by how I looked.
For a couple of days after this incident and many others, I found myself disconnecting myself from my tubes. When others look at me they sometimes ask if I am dying. But in reality, I am living bc of them, for without them, yes, I would die.
So today for the first time in a while I found myself genuinely smiling from ear to ear. These past 4 weeks of clinicals have been filled with absolute pure exhaustion in trying to meet the same expectations as my classmates with no accommodations despite my disabilities, but at the end of the day I am here. I am living. Bc of these tubes, sir, I am living.
I’ve been a bit inactive lately, but I have some updates.
I started my second session of summer classes a few weeks ago and they’re going as good as can be expected. I’ve been extremely fatigued which is not so conducive to academic excellence, but I’m doing my best. I was quite ill yesterday and for some reason I have been dealing with constant nausea despite lots and lots of Zofran. Anyway, I’m still alive...it just takes a lot of energy to keep up with social media sometimes!! Tell me how your week has been so far! I’ve been watching #GreysAnatomy
The “I’m Too Old For This” Starter Pack: your guide to surviving the day after a concert, sporting event, or other event you said YES to when you definitely should’ve said no.
The first step to recovery is to sleep until at least ten. Then, you can roll out your neck with this nifty roller (actually designed for feet 💁🏻♀️). Then, rub on some Deep Relief. Finally, as you get to work for the day, make sure to down some caffeine-filled electrolyte water. We also suggest headphones as a reminder of why you listen to @spotify
instead of seeing your favorite bands live
In all seriousness though, Ive been using CBD oil for several months and recently switched over to these gel capsules from @ecosciencesco.
And while I’ve found the biggest CBD benefits to be on my focus and concentration, I do think taking hemp oil has helped with quicker recovery after overdoing it.
So tell me, what do you keep in your recovery toolkit? ::
#plantsasmedicine #hempheals #ecosciences #healthyhemp #ambecosciences #ambcollab
The poverty chronicles continue:
Bench 4x6, top set 61kg/134lbs
OHP 4x6, top set 35kg/~5 bone-in hams
Not shown: upright row 3x8, lying ez bar pull over 3x8