Amens for Amanda Videos
Videos by Amens for Amanda. Christ follower ✝️ Disabled due to complex neurological illnesses 🧠 Follow my journey!☺️🙌🏻💖
💜early AUGUST Update 💜
The Vitamin C conundrum we have right now: if anyone has suggestions open to them all! 😊
Sadly this doesn’t make me feel great at all BUT it DOES make me basically a pirate so that’s something and is kinda cool??. 😂 🏴☠️
1. I am not absorbing nutrients well
2. My vitamin C is clinically low for the last few months (this is noooot good)
3. Because I am having allergic reactions to so so many things (these reactions though I do my best to not let them happen are honestly out of my control because of my mast cell disease).
4. I have had anaphylaxis twice to vitamin C otc Supplements (it’s the fillers in them not the vitamin itself) there is no “safe” option we can find. My amazing doc is looking for a “pure” version that would contain the vitamin itself only and no additives but it can also not contain fruit peels or citric acid from what we can guess.
5. Because I have had anaphylaxis to every fruit I’ve tried since after my remicaid infusion incident. In the beginning of my last cell disease my amazingly beautiful cousin Maddie and her fiancé Michael mailed me a fruit basket 😭💕 and I could eat things then. My progression downhill was pretty fast tbh.
6. So I am banned from trying fruit at all until my immunologist gives me the okay (this probably won’t be for several months,a year) and even when that happens it will likely have to be a monitored “food challenge” in their office.
7. I have a huge medical team working on this and love them for it. Nutrition, GI, nurse case manager, social worker, PCP, allergy/immunology,etc.
#rarediseaseawareness #mastcellactivationdisorders #chronicallyfabulous #disabilityawareness #disabilityisntabadword #anaphalaxisawareness #anaphalaxis #mastcellawareness #immunesupport #immunesystemhealth
to enable soundOther Amens for Amanda videos
💜early AUGUST Update 💜 The Vitamin C conundrum we have right now: if anyone has suggestions open to them all! 😊 Sadly this doesn’t make me feel great at all BUT it DOES make me basically a pirate so that’s something and is kinda cool??. 😂 🏴☠️ 1. I am not absorbing nutrients well 2. My vitamin C is clinically low for the last few months (this is noooot good) 3. Because I am having allergic reactions to so so many things (these reactions though I do my best to not let them happen are honestly out of my control because of my mast cell disease). 4. I have had anaphylaxis twice to vitamin C otc Supplements (it’s the fillers in them not the vitamin itself) there is no “safe” option we can find. My amazing doc is looking for a “pure” version that would contain the vitamin itself only and no additives but it can also not contain fruit peels or citric acid from what we can guess. 5. Because I have had anaphylaxis to every fruit I’ve tried since after my remicaid infusion incident. In the beginning of my last cell disease my amazingly beautiful cousin Maddie and her fiancé Michael mailed me a fruit basket 😭💕 and I could eat things then. My progression downhill was pretty fast tbh. 6. So I am banned from trying fruit at all until my immunologist gives me the okay (this probably won’t be for several months,a year) and even when that happens it will likely have to be a monitored “food challenge” in their office. 7. I have a huge medical team working on this and love them for it. Nutrition, GI, nurse case manager, social worker, PCP, allergy/immunology,etc. #rarediseaseawareness #mastcellactivationdisorders #chronicallyfabulous #disabilityawareness #disabilityisntabadword #anaphalaxisawareness #anaphalaxis #mastcellawareness #immunesupport #immunesystemhealth
Frustrating. Exhausted. Beyond sick everyday. I am just gonna complain because I need to right now. I know it’s just hair and I know it’s vain but giving up yet another small thing (all the small things and the big things really have been adding up lately) to chronic debilitating illnesses is just really the pits. ☹️ #chronicillnessawareness #mastcelldisease #anaphalaxis #hairlosshelp #allergictotheworld #hairloss #hairlosstreatment #chronicillness #chronicallyill #disability #disabledisnotabadword #butimreallytired #imtiredofthisgrandpa
Small update: 7th(not counting er visits and hospital stays) steroid taper in 6 months…. Unfortunately still not controlling mast cell function & allergic reactions well.💔🙏 Wanted to do better about updates but I’ve been so exhausted, thanks for hanging in there with me.😃 #prayer #prayerrequests #prayerrequest #prayerchangesthings #godstiming #itsokaytonotbeokay #trusttheprocess #trust #christianity #mastcelldisease #mastcellactivation #notjustanallergy #mastcellactivationsyndrome #xolairinjection #xolairinjection #chemotherapy #steroid #chronicillness #chronicillnessawareness #chronicillnesswarrior #disability #disabilityawareness #disabilitytiktok #disabilityadvocate #disabledandcute #redhead #findacure #chemotherapy #lifesavingmedications #hospitaltiktoks #hospital #hospitalbag #disabilities #immunesystem #immunecompromised #anaphylaxis #anaphalacticshock #allergies
🫀🫀🫀Cardiology update: allergic reactions we can’t yet get controlled causing some HR issues but monitoring. Hoping for good results long term. #mastcelldisease #allergieskillingme #angioedema #invisibleillness #chronicillnessawareness #disabilityawareness
Learning it’s okay to share your story - even the ugly parts 🩷 #mastcelldisease #eds #csfleakjourney #csfleakwarrior #disability #disabledtiktok #disabilityawareness #neckpainrelief #nervedamage #nervedamagesucks #spinehealthcare #spoonie #chronicillnesstiktok #ehlorsdanlossyndrome #healingjourney #crohnsdisease #disabilityrights
Mast Cell Disorder Update. 5 months of exhaustion & not healing well (unfortunately)💔 #mastcelldisease #eds #csfleakjourney #csfleakwarrior #disability #disabledtiktok #disabilityawareness #neckpainrelief #nervedamage #nervedamagesucks #spinehealthcare #spoonie #chronicillnesstiktok #ehlorsdanlossyndrome #healingjourney #crohnsdisease
#csfleak #spineinjury #brainhealth #chronicillness #cfs #cfsme #chronicillnesswarrior #brokenbrainclub #brainhealth #spinehealth #MayoClinic #neurology #neurologicalcondition #exhibition #chronicpain #chronicfatiguesyndrome #EDS#edsawareness
🧠Health Update from 02/07/23 : possible neck injury (?) & trying to find treatment options! 🧠
🧠Health Update🧠: from 02/07/23
*Trying to find treatment options still
*Possible neck injury? 😢😖
.
.
.
.
.
#brokenbrainclub #intractablemigraine #spoonie #spinalinjury #eds #crohnsdisease #disabilityawareness #findthegood #disabilityisnotabadword #physicaltherapy #helpmeheal