#neisvoid — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #neisvoid, aggregated by home.social.
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I'm so embarrassed and so sorry. 😖
#NEISvoid #hEDS #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #spooniechat #fibromyalgia #chiarimalformation #tetheredcord #mutualaid
RE: https://plasmatrap.com/notes/amt3jiihdr -
"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare
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Is this medication *checks list price* $7,624.59 per dose? Yes.
Am I going to stop needing it anytime soon? I hope not, because that means I'm dead.
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Is this medication *checks list price* $7,624.59 per dose? Yes.
Am I going to stop needing it anytime soon? I hope not, because that means I'm dead.
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Is this medication *checks list price* $7,624.59 per dose? Yes.
Am I going to stop needing it anytime soon? I hope not, because that means I'm dead.
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Is this medication *checks list price* $7,624.59 per dose? Yes.
Am I going to stop needing it anytime soon? I hope not, because that means I'm dead.
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Is this medication *checks list price* $7,624.59 per dose? Yes.
Am I going to stop needing it anytime soon? I hope not, because that means I'm dead.
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My health insurance company requires re-authorization for one of my prescriptions every year.
It is a prescription for my autoimmune disorders.
You know, the chronic, incurable, lifelong illnesses? The ones I have to stay on medication for for the rest of my life?
I'm not sure if they think I'm just gonna wake up one year and not have an autoimmune disease, or...
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My health insurance company requires re-authorization for one of my prescriptions every year.
It is a prescription for my autoimmune disorders.
You know, the chronic, incurable, lifelong illnesses? The ones I have to stay on medication for for the rest of my life?
I'm not sure if they think I'm just gonna wake up one year and not have an autoimmune disease, or...
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My health insurance company requires re-authorization for one of my prescriptions every year.
It is a prescription for my autoimmune disorders.
You know, the chronic, incurable, lifelong illnesses? The ones I have to stay on medication for for the rest of my life?
I'm not sure if they think I'm just gonna wake up one year and not have an autoimmune disease, or...
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My health insurance company requires re-authorization for one of my prescriptions every year.
It is a prescription for my autoimmune disorders.
You know, the chronic, incurable, lifelong illnesses? The ones I have to stay on medication for for the rest of my life?
I'm not sure if they think I'm just gonna wake up one year and not have an autoimmune disease, or...
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My health insurance company requires re-authorization for one of my prescriptions every year.
It is a prescription for my autoimmune disorders.
You know, the chronic, incurable, lifelong illnesses? The ones I have to stay on medication for for the rest of my life?
I'm not sure if they think I'm just gonna wake up one year and not have an autoimmune disease, or...
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The difference in my POTS stability from just two days of having my supplements back is kind of insane. Very grateful to the person that bought them for me. Hopefully this flare I'm in will settle down. I have a Drs appt this week 😩
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The difference in my POTS stability from just two days of having my supplements back is kind of insane. Very grateful to the person that bought them for me. Hopefully this flare I'm in will settle down. I have a Drs appt this week 😩
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The difference in my POTS stability from just two days of having my supplements back is kind of insane. Very grateful to the person that bought them for me. Hopefully this flare I'm in will settle down. I have a Drs appt this week 😩
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The difference in my POTS stability from just two days of having my supplements back is kind of insane. Very grateful to the person that bought them for me. Hopefully this flare I'm in will settle down. I have a Drs appt this week 😩
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Oh my goodness, I'm so nervous. I have a very important doctor's appointment in a half an hour that I really NEED to go well. I'd appreciate it if anyone sends me good vibes/wishes me luck/whatever. Aaaaa!!! 😖
#chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS -
Ultrasound came back 99% normal. The nodule they've been watching since my surgery has gotten bigger so my surgeon wants me to get it biopsied. The nodules on the right half (that got removed) ended up benign so I'm trying not to overthink it. #disability #NEISvoid #ChronicIllness
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Ultrasound came back 99% normal. The nodule they've been watching since my surgery has gotten bigger so my surgeon wants me to get it biopsied. The nodules on the right half (that got removed) ended up benign so I'm trying not to overthink it. #disability #NEISvoid #ChronicIllness
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Ultrasound came back 99% normal. The nodule they've been watching since my surgery has gotten bigger so my surgeon wants me to get it biopsied. The nodules on the right half (that got removed) ended up benign so I'm trying not to overthink it. #disability #NEISvoid #ChronicIllness
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Ultrasound came back 99% normal. The nodule they've been watching since my surgery has gotten bigger so my surgeon wants me to get it biopsied. The nodules on the right half (that got removed) ended up benign so I'm trying not to overthink it. #disability #NEISvoid #ChronicIllness
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“Doing less than you want, more than you should” ooooffff!! (this whole list is so true!) #NEISvoid
RE: https://bsky.app/profile/did:plc:dbzmdmsaz6lkhb4tv3culzme/post/3ml4fm6hbgr2s -
Catch me getting pretty ladies with my new rizz like a bird captured for research lol #NEISvoid #disability #ChronicIllness
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Catch me getting pretty ladies with my new rizz like a bird captured for research lol #NEISvoid #disability #ChronicIllness
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Catch me getting pretty ladies with my new rizz like a bird captured for research lol #NEISvoid #disability #ChronicIllness
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Catch me getting pretty ladies with my new rizz like a bird captured for research lol #NEISvoid #disability #ChronicIllness
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Wondering if anyone has any great system (open source db?) for tracking multiple symptoms for multiple and varying medical concerns/body systems.
Would love a non-Android program or tempted to play with excel or Access and make my own form/database combo.
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Wondering if anyone has any great system (open source db?) for tracking multiple symptoms for multiple and varying medical concerns/body systems.
Would love a non-Android program or tempted to play with excel or Access and make my own form/database combo.
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Wondering if anyone has any great system (open source db?) for tracking multiple symptoms for multiple and varying medical concerns/body systems.
Would love a non-Android program or tempted to play with excel or Access and make my own form/database combo.
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Wondering if anyone has any great system (open source db?) for tracking multiple symptoms for multiple and varying medical concerns/body systems.
Would love a non-Android program or tempted to play with excel or Access and make my own form/database combo.
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Wondering if anyone has any great system (open source db?) for tracking multiple symptoms for multiple and varying medical concerns/body systems.
Would love a non-Android program or tempted to play with excel or Access and make my own form/database combo.
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The joys of an energy limiting illness and...life. I'm trying a new CPAP machine, and I think the mask is not a great fit. (What it reads as "a good seal" reads to me as "a huge blast of freezing cold air across my cheek")
This morning, I scheduled an appointment for an in-person fitting this afternoon. I knew that was gonna suck because it meant washing my hair, as it was very greasy after getting a scalp massage yesterday. And it comes a bit too close before a visit from my mom and her partner tomorrow, increasing the odds of it causing a crash.
Of course, the CPAP people call me to tell me there's a power outage at their office and they're rescheduling appointments into next week, right while my head is under the tap. Oh well. I guess now I don't have to wash my hair tomorrow, so I'm saving a little energy before my visitors arrive. #NEISvoid
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The joys of an energy limiting illness and...life. I'm trying a new CPAP machine, and I think the mask is not a great fit. (What it reads as "a good seal" reads to me as "a huge blast of freezing cold air across my cheek")
This morning, I scheduled an appointment for an in-person fitting this afternoon. I knew that was gonna suck because it meant washing my hair, as it was very greasy after getting a scalp massage yesterday. And it comes a bit too close before a visit from my mom and her partner tomorrow, increasing the odds of it causing a crash.
Of course, the CPAP people call me to tell me there's a power outage at their office and they're rescheduling appointments into next week, right while my head is under the tap. Oh well. I guess now I don't have to wash my hair tomorrow, so I'm saving a little energy before my visitors arrive. #NEISvoid
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The joys of an energy limiting illness and...life. I'm trying a new CPAP machine, and I think the mask is not a great fit. (What it reads as "a good seal" reads to me as "a huge blast of freezing cold air across my cheek")
This morning, I scheduled an appointment for an in-person fitting this afternoon. I knew that was gonna suck because it meant washing my hair, as it was very greasy after getting a scalp massage yesterday. And it comes a bit too close before a visit from my mom and her partner tomorrow, increasing the odds of it causing a crash.
Of course, the CPAP people call me to tell me there's a power outage at their office and they're rescheduling appointments into next week, right while my head is under the tap. Oh well. I guess now I don't have to wash my hair tomorrow, so I'm saving a little energy before my visitors arrive. #NEISvoid
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The joys of an energy limiting illness and...life. I'm trying a new CPAP machine, and I think the mask is not a great fit. (What it reads as "a good seal" reads to me as "a huge blast of freezing cold air across my cheek")
This morning, I scheduled an appointment for an in-person fitting this afternoon. I knew that was gonna suck because it meant washing my hair, as it was very greasy after getting a scalp massage yesterday. And it comes a bit too close before a visit from my mom and her partner tomorrow, increasing the odds of it causing a crash.
Of course, the CPAP people call me to tell me there's a power outage at their office and they're rescheduling appointments into next week, right while my head is under the tap. Oh well. I guess now I don't have to wash my hair tomorrow, so I'm saving a little energy before my visitors arrive. #NEISvoid
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CW: Health, doctor, neg, ME/CFS
Thanks for the support, friends.
As some of you noted, there is something badly wrong when getting healthcare is one of the greatest hazards to my health.
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CW: Health, doctor, neg, ME/CFS
Thanks for the support, friends.
As some of you noted, there is something badly wrong when getting healthcare is one of the greatest hazards to my health.
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CW: Health, doctor, neg, ME/CFS
He did say (without quite apologizing) that he hadn't realized things had got so bad since he last saw me and that he wouldn't do this to me again just for check-ins.
(Apparently appealing to multiple levels of staff with just how bad things are does not actually do it so much as my HR alarm going off while I'm sitting there.)
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CW: Health, doctor, neg, ME/CFS
He did say (without quite apologizing) that he hadn't realized things had got so bad since he last saw me and that he wouldn't do this to me again just for check-ins.
(Apparently appealing to multiple levels of staff with just how bad things are does not actually do it so much as my HR alarm going off while I'm sitting there.)
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CW: Health, doctor, neg, ME/CFS
He did say (without quite apologizing) that he hadn't realized things had got so bad since he last saw me and that he wouldn't do this to me again just for check-ins.
(Apparently appealing to multiple levels of staff with just how bad things are does not actually do it so much as my HR alarm going off while I'm sitting there.)
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CW: Health, doctor, neg, ME/CFS
I'm housebound and 95% bedbouund with very severe ME/CFS.
Last year, I left the house five times. One for a medical appointment that fucked me up forever. One by ambulance for several nights, inpatient. Also permanent harm, but not as drastic. The others were short and I never even got out of the car.
Now I'm using one of this year's because cardiologist can't do much by telehealth and made it a condition of prescription renewals.
An hour past appointment time. My HR alarms are going off sitting in my wheelchair. I'm overheated. Still waiting for him.
This is gonna hurt.
It also means I'll have to make a second trip for lab draws because I have to get home ASAP.
(Much later: He walked in just as I finished the above. It hurt. The only thing he did that required me being in person was routine stethoscope checks.)
Hashtags follow: #MECFS #Disability #ChronicIllness #NEISVoid
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CW: Health, doctor, neg, ME/CFS
I'm housebound and 95% bedbouund with very severe ME/CFS.
Last year, I left the house five times. One for a medical appointment that fucked me up forever. One by ambulance for several nights, inpatient. Also permanent harm, but not as drastic. The others were short and I never even got out of the car.
Now I'm using one of this year's because cardiologist can't do much by telehealth and made it a condition of prescription renewals.
An hour past appointment time. My HR alarms are going off sitting in my wheelchair. I'm overheated. Still waiting for him.
This is gonna hurt.
It also means I'll have to make a second trip for lab draws because I have to get home ASAP.
(Much later: He walked in just as I finished the above. It hurt. The only thing he did that required me being in person was routine stethoscope checks.)
Hashtags follow: #MECFS #Disability #ChronicIllness #NEISVoid
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CW: Health, doctor, neg, ME/CFS
I'm housebound and 95% bedbouund with very severe ME/CFS.
Last year, I left the house five times. One for a medical appointment that fucked me up forever. One by ambulance for several nights, inpatient. Also permanent harm, but not as drastic. The others were short and I never even got out of the car.
Now I'm using one of this year's because cardiologist can't do much by telehealth and made it a condition of prescription renewals.
An hour past appointment time. My HR alarms are going off sitting in my wheelchair. I'm overheated. Still waiting for him.
This is gonna hurt.
It also means I'll have to make a second trip for lab draws because I have to get home ASAP.
(Much later: He walked in just as I finished the above. It hurt. The only thing he did that required me being in person was routine stethoscope checks.)
Hashtags follow: #MECFS #Disability #ChronicIllness #NEISVoid
-
CW: Health, doctor, neg, ME/CFS
I'm housebound and 95% bedbouund with very severe ME/CFS.
Last year, I left the house five times. One for a medical appointment that fucked me up forever. One by ambulance for several nights, inpatient. Also permanent harm, but not as drastic. The others were short and I never even got out of the car.
Now I'm using one of this year's because cardiologist can't do much by telehealth and made it a condition of prescription renewals.
An hour past appointment time. My HR alarms are going off sitting in my wheelchair. I'm overheated. Still waiting for him.
This is gonna hurt.
It also means I'll have to make a second trip for lab draws because I have to get home ASAP.
(Much later: He walked in just as I finished the above. It hurt. The only thing he did that required me being in person was routine stethoscope checks.)
Hashtags follow: #MECFS #Disability #ChronicIllness #NEISVoid
-
CW: Health, doctor, neg, ME/CFS
I'm housebound and 95% bedbouund with very severe ME/CFS.
Last year, I left the house five times. One for a medical appointment that fucked me up forever. One by ambulance for several nights, inpatient. Also permanent harm, but not as drastic. The others were short and I never even got out of the car.
Now I'm using one of this year's because cardiologist can't do much by telehealth and made it a condition of prescription renewals.
An hour past appointment time. My HR alarms are going off sitting in my wheelchair. I'm overheated. Still waiting for him.
This is gonna hurt.
It also means I'll have to make a second trip for lab draws because I have to get home ASAP.
(Much later: He walked in just as I finished the above. It hurt. The only thing he did that required me being in person was routine stethoscope checks.)
Hashtags follow: #MECFS #Disability #ChronicIllness #NEISVoid
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The things I do for content..
Today, that was getting sunsick. Emerson and I went to a bookshop downtown after our original plans fell through, and I got…kind of irradiated making a video while I was waiting for him to finish up inside.
I have to be awake at 10 AM tomorrow for writer’s group and I did not nap today like a fool.
Pray for me, if you’re into that. If you’re not, send me good energy, I guess.
I need to shut my eyes now. I am so, so tired..
-Allēna
#amWriting #content #Emerson #everythingIsContent #everythingIsCopy #medicalDiary #milwaukee #NEISvoid #overwork #smdh #sunAllergy #sunReaction #writersGroup