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Jam Bruce

@dancejems

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Just a girl sharing life with complex health 🧬❤️‍🩹- Adapting one Kpop dance at a time 🎵

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Get in girl! We’re going skiing!

Obsessed with @meghantrainor new hit ‘Get In Girl’

Despite challenges, so happy to have made it to my ski lesson today!

#meghantrainor #adaptive #skilesson #warmdays #dance

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~Feeling useless~

Since becoming disabled, I’ve been learning not to equate my worth to others by my productivity. What I’m slowly realizing, is that the learning curve never flattens. Many of these guilty thoughts / feelings of uselessness, have crept back up to the surface. Along with all the joys, this move has reopened some old wounds.

A move marks a period of time and transition in ones life. For me: this particular move marks a real step forward into “adulthood”- Moving into our first house as a soon-to-be married family.

Although this move is supposed to mark this BIG next step in life, I am unable to fully participate in it. I can’t be that girl carrying moving boxes into the new bedroom, I can’t be that partner lifting the other end of the couch as we try and squeeze through the front door, and I certainly can’t stay awake long enough to have celebratory pizza and beers with the moving crew.

This move will primarily consist of me sitting by and watching as my loved ones do the heavy lifting. Although sticking to the sidelines feels almost impossible some days… I must conserve my well-being for things to come.

This is my reminder as well as yours: slow down. Protect your energy. Love all the things that your body CAN do.

Being “useful” is overrated anyhow 😉

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Black Halos are back in stock. We ship to more than 22 countries worldwide - USA 🇺🇸 UK 🇬🇧 Australia 🇦🇺 New Zealand 🇳🇿 Germany 🇩🇪 Sweden 🇸🇪 Denmark 🇩🇰 to name a few!
#koldtec #koldtechalo #headachehalo #headachehat #headacherelief #headaches #migrainewarrior #migraine #migraines #migrainerelief #headache

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I may not get there but while I’m here I’m gonna fight not just for me but for Us, and one day we’ll sing your song together 🐒🦒🦓
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#zebrastrong #mecgs #meawareness #pwme
#ehlersdanlossyndrome
#tetheredcordsyndrome
@mienfermedadinvisible
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Quizás nunca llegue, pero mientras esté aquí voy a luchar no por mí sino por nosotras y un día cantaremos tú canción juntas 🐒🦒🦓

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my heart LIVES for seeing so many spoonies together 🥺🤍 sound on!

also so sorry IG only lets me tag 20 people, will tag everyone else in comments!!

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Tomorrow is the beginning of my latest health journey. In the morning, I will fly from San Antonio, TX to Charleston, SC. I have booked a reservation at my favorite restaurant called Fig (Thank you Benadryl and IV Promethazine. I could not do life without you.) Thursday, I have a pre-op appointment at Rutledge Tower and should find out what time my surgery will be. Friday, I will place all of my faith in the hands of Dr. Patel as I have my tethered cord released. My emotions are running high. I have lost so much to EDS & Co and this is hopefully a step in the right direction. So here’s to new beginnings, non linear healing, lots of PT, and the chance to possibly improve my quality of life. ❤️ #sanantonio, #texas, #musc, #charleston, #southcarolina, #neurosurgery, #physicaltherapy, #newbeginnings, #healing, #chronicillness, #invisbleillness, #eds, #pots, #mcas, #cci, #gastroparesis, #tetheredcord, #dysautonomia, #ehlersdanlossyndrome, #brainaneurysm, #mentalhealth, #anxiety, #depression, #ptsd, #medicalptsd, #nevergiveup, #life, #update, #mastcellactivationsyndrome, #posturalorthostatictachycardiasyndrome

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It is said that “silence is golden,” and in my case (on this platform), it has been keeping me alive. Whether it be planned doctors appointments, imaging, labs, routine life saving vaccines/injections, urgent care/emergency room visits, coordinating a major out of state surgery, etc., I just haven’t had the capacity to use social media to advocate like I used to. It pains me more than you can imagine, but I’ve been doing a lot of advocating behind the scenes (not only for myself, but for the chronic/invisible illness and disability community as a whole). Many of you are doing the same (even if you don’t know it) just by challenging the current medical model and the assumptions society has about invisible/visible illness and disability. Even in your darkest days (of which I’ve had many), please keep fighting. Recently, I found out that had I not, I would most certainly not be here today. While I suspected I was dying over this past year, not a single doctor would admit it to me. It wasn’t until a few weeks ago that ONE doctor was comfortable confirming my suspicions because he knew I had finally found a doctor who had solved the puzzle to saving my life. This is NOT OKAY, and while this is an extreme scenario, many of us are in horrible positions because no one listened to us in the first place. You are so much smarter than you think. You are so much stronger than you believe. Rely on people in this community. If you let them, they will help you lead the way. Challenge doctors. You, and those in bodies like yours, are your best advocates, not people with fancy medical degrees. And lastly, always remember that you are worthy of being alive, even if broken medical systems say otherwise. I believe in YOU! ❤️#advocateforyourself, #advocacy, #advocate, #medicine, #broken, #doctor, #community, #challenge, #humanitarian, #chronicillness, #invisbleillness, #eds, #pots, #mcas, #cci, #tetheredcord, #gastroparesis, #neurosurgery, #dysautonomia, #ehlersdanlossyndrome, #ptsd, #mentalhealth, #medicalptsd, #nevergiveup, #keepfighting, #sanantonio, #texas, #mastcellactivationsyndrome, #posturalorthostatictachycardiasyndrome

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Today I sat in a room with one of the best physicians I’ve ever had the privilege of being under the care of. Dr. Sunil Patel, a neurosurgeon known within the EDS community, diagnosed me with Dystonia, Cranciocervical Instability, and Occult Tethered Cord. He also confirmed my diagnosis of Hypermobile Ehlers-Danlos Syndrome. After 4 years, I now know why I have steadily declined, despite appropriate management of my many comorbidities. I will be having my first surgery in December to release my tethered cord. I will then do a few months of PT, return to see Dr. Patel, and determine if I need a fusion from the base of my skull to C2. Thank you to everyone in this community who kept pushing me to seek answers and never give up. 💕 #cci, #tetheredcord, #musc, #craniocervicalinstability, #neurosurgery, #neurosurgeon, #dystonia, #eds, #pots, #heds, #mcas, #ehlersdanlossyndrome, #brainaneurysm, #gastroparesis, #dysautonomia, #chronicillness, #invisbleillness, #mastcell, #community, #mastcellactivationsyndrome, #nevergiveup, #mentalhealth, #ptsd, #medicalptsd, #validation, #gratitude, #posturalorthostatictachycardiasyndrome

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As I prepare for my medical trip to South Carolina this week, I wish you could be there with me. Honestly, there have been so many times in life that I have longed for your physical presence. Unfortunately, your life ended unexpectedly and tragically when you were 39 and I was two. Nevertheless, it has been said that you and I are alike in every way possible. Thank goodness for that. I would not have the love, empathy, or fire within my soul otherwise. That said, I know our fates have always been intertwined. Therefore, it would not surprise me if my life ends prematurely just like yours did so many years ago. If and when this happens, I hope the Universe reunites us in whatever way possible. Until then, as your daughter, I will make sure your memory lives on within me. I will love you forever and always. 💕 #mother, #daughter, #grief, #death, #caraccident, #universe, #fate, #soul, #family, #love, #ptsd, #mentalhealth, #chronicillness, #invisibleillness, #eds, #pots, #mcas, #gastroparesis, #brainaneurysm, #dysautonomia, #sanantonio, #texas, #mastcellactivationsyndrome, #posturalorthostatictachycardiasyndrome

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“Find your way, adventure awaits.” My shirt sums up my life. In the past few weeks, I have terminated my parental rights so that my daughter can be adopted by an estranged family member, had one of my best friends @karlieclee move from Canada to Texas, connected with another beautiful soul @medicalalertmaverick, and moved into a new apartment. Tomorrow morning I will be in the OR getting my port removed and a Hickman put in its place. (I have immense gratitude for the vascular surgeon who is willing to help save my life despite the risks and complexities of my body.) That said, I’ve been struggling to find my way, especially knowing the “adventures” that accompany life with multiple chronic illnesses. Yet, I am ALIVE and will continue this fight to the best of my ability. Thank you to all of those who have checked in on me! ❤️ #chronicillness, #invisibleillness, #or, #surgery, #move, #adoption, #findyourway, #adventure, #soulmate, #bestfriend, #life, #ptsd, #mentalhealth, #anxiety, #depression, #eds, #pots, #mcas, #mastcell, #dysautonomia, #gastroparesis, #brainaneurysm, #ehlersdanlossyndrome, #sanantonio, #texas, #mastcellactivationsyndrome, #posturalorthostatictachycardiasyndrome

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Lately I’ve been questioning what the purpose of one’s existence is when you’re this sick. The kind of sick that leaches into every aspect of your life and robs you of your identity. My days are filled with medically related calls, appointments, procedures, and trips. Sadly, there’s no guarantee that any of these things will improve my quality of life. The truth is that I’ve steadily declined since my multiple diagnoses four years ago. It’s certainly not for a lack of effort on my part. The harsh reality is that I’m just very rare and complex. I regularly puzzle doctors (including experts in certain specialties) and am referred to as a “true unicorn.” I loathe that my identity has become that of a mystical creature. Yet, here I am, still showing up. Honestly, I desperately want to give up, but I can’t. I didn’t overcome this much adversity to not attempt to solve the puzzle that is my body. So I will continue to exist, tears running down my face, in hopes that one day this fight will all be worth it. #existence, #life, #reality, #unicorn, #nevergiveup, #mentalhealth, #ptsd, #medicalptsd, #complex, #chronicillness, #chronicpain, #invisibleillnesses, #eds, #pots, #mcas, #brainaneurysm, #fight, #gastroparesis, #ehlersdanlossyndrome, #dysautonomia, #sanantonio, #texas, #puzzle, #mastcellactivationsyndrome, #posturalorthostatictachycardiasyndrome

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