Sonya (she/her)
@sonyajean.bsky.social
Perimenopausal neurodivergent philomath disabled by Long Covid induced ME/CFS & POTS
I miss hiking, gardening, crafting, & baking. Other interests: native plants of New England, graphic design, autoimmune & rare diseases, gut health & audiobooks
I miss hiking, gardening, crafting, & baking. Other interests: native plants of New England, graphic design, autoimmune & rare diseases, gut health & audiobooks
Reposted by Sonya (she/her)
Something I think about a lot: One of the reasons people used to think boys “outgrew” ADHD is because in adulthood men tend to offload their executive function (managing calendars, remembering birthdays, cleaning, grocery shopping) to wives and secretaries so it masked their symptoms.
October 15, 2025 at 1:42 AM
Something I think about a lot: One of the reasons people used to think boys “outgrew” ADHD is because in adulthood men tend to offload their executive function (managing calendars, remembering birthdays, cleaning, grocery shopping) to wives and secretaries so it masked their symptoms.
Reposted by Sonya (she/her)
Elon Musk now has access to your Social Security number. The world’s richest man has gained access to the confidential personal information of every taxpayer in the United States.
February 3, 2025 at 2:29 AM
Elon Musk now has access to your Social Security number. The world’s richest man has gained access to the confidential personal information of every taxpayer in the United States.
Reposted by Sonya (she/her)
Can't stress enough how important it is to care for our nervous systems right now and in the days, months and years to come. All of that fear and anxiety will take a toll on us. Take time to breathe, feel it and let it move through you. Even if all you can do is 5-15mins a day, that can do wonders.
February 2, 2025 at 7:20 PM
Can't stress enough how important it is to care for our nervous systems right now and in the days, months and years to come. All of that fear and anxiety will take a toll on us. Take time to breathe, feel it and let it move through you. Even if all you can do is 5-15mins a day, that can do wonders.
Truly dystopian activities
February 3, 2025 at 1:26 AM
Truly dystopian activities
This type of horrific treatment must stop. There is ample evidence of the harm this causes #pwME
PLEASE sign & share
PLEASE sign & share
Please sign and share the petition to stop a patient with Very Severe ME being forced to take inappropriate antipsychotic meds and detained because they can’t get out of bed.
bit.ly/linepetition
bit.ly/linepetition
January 20, 2025 at 2:37 PM
This type of horrific treatment must stop. There is ample evidence of the harm this causes #pwME
PLEASE sign & share
PLEASE sign & share
I have #SDAM (difficult to recall personal past events) but I can often remember facts. I was 🤯 this wk when a loved one shared this 📸 of a denim quilt I made them 19 yrs ago - I had NO memory of it! How could I forget the fact that I created this personalized king sized quilt from salvaged denim?!
January 18, 2025 at 2:39 PM
I have #SDAM (difficult to recall personal past events) but I can often remember facts. I was 🤯 this wk when a loved one shared this 📸 of a denim quilt I made them 19 yrs ago - I had NO memory of it! How could I forget the fact that I created this personalized king sized quilt from salvaged denim?!
Anyone know the common source(s) for nicotinamide riboside?
I’ve found 3 products that don’t seem to have 🌽-derivative fillers but haven’t uncovered the source material
Considering trying it instead of D-ribose (typically recommended for #pwME ) since I can’t find a d-ribose not derived from 🌽
I’ve found 3 products that don’t seem to have 🌽-derivative fillers but haven’t uncovered the source material
Considering trying it instead of D-ribose (typically recommended for #pwME ) since I can’t find a d-ribose not derived from 🌽
December 16, 2024 at 4:36 PM
Anyone know the common source(s) for nicotinamide riboside?
I’ve found 3 products that don’t seem to have 🌽-derivative fillers but haven’t uncovered the source material
Considering trying it instead of D-ribose (typically recommended for #pwME ) since I can’t find a d-ribose not derived from 🌽
I’ve found 3 products that don’t seem to have 🌽-derivative fillers but haven’t uncovered the source material
Considering trying it instead of D-ribose (typically recommended for #pwME ) since I can’t find a d-ribose not derived from 🌽
Our current town’s firefighters put 🎅🏻 on a 🚒 every Dec & drive thru town throwing popcorn balls to kids. We’ve been here 5yrs & *every* yr my cPTSD is triggered by SUPER loud🚨🚨🚨 that I associate w/catastrophe - even when I know they’re coming. At least it wasn’t yesterday, 12/14 anniv is hard enough
December 15, 2024 at 4:38 PM
Our current town’s firefighters put 🎅🏻 on a 🚒 every Dec & drive thru town throwing popcorn balls to kids. We’ve been here 5yrs & *every* yr my cPTSD is triggered by SUPER loud🚨🚨🚨 that I associate w/catastrophe - even when I know they’re coming. At least it wasn’t yesterday, 12/14 anniv is hard enough
Reposted by Sonya (she/her)
I know it may seem
that the deadly outbreak
of a mystery disease in Congo
isn’t your problem,
after all,
you aren’t in Congo,
but by this point
in the current pandemic
you should understand
that what starts
as someone else’s problem
can very quickly become
your problem as well.
that the deadly outbreak
of a mystery disease in Congo
isn’t your problem,
after all,
you aren’t in Congo,
but by this point
in the current pandemic
you should understand
that what starts
as someone else’s problem
can very quickly become
your problem as well.
December 9, 2024 at 9:57 PM
I know it may seem
that the deadly outbreak
of a mystery disease in Congo
isn’t your problem,
after all,
you aren’t in Congo,
but by this point
in the current pandemic
you should understand
that what starts
as someone else’s problem
can very quickly become
your problem as well.
that the deadly outbreak
of a mystery disease in Congo
isn’t your problem,
after all,
you aren’t in Congo,
but by this point
in the current pandemic
you should understand
that what starts
as someone else’s problem
can very quickly become
your problem as well.
Going to #longcovid clinic is stressful. I wasn’t sure I’d have enough energy to get there tomorrow but new med dose kicked in today 😌 Still need to gather info & questions, but realized @ 5pm - it’s been so long since 🚙 was driven that 🪫 is ☠️ So… $65 in Uber 😞 + $50 copay + $$$ compounded 💊 #MECFS
December 9, 2024 at 11:11 PM
Going to #longcovid clinic is stressful. I wasn’t sure I’d have enough energy to get there tomorrow but new med dose kicked in today 😌 Still need to gather info & questions, but realized @ 5pm - it’s been so long since 🚙 was driven that 🪫 is ☠️ So… $65 in Uber 😞 + $50 copay + $$$ compounded 💊 #MECFS
Reposted by Sonya (she/her)
Amnesty International investigation concludes Israel is committing genocide against Palestinians in Gaza @amnestyuk.bsky.social
www.amnesty.org/en/documents...
www.amnesty.org/en/documents...
Israel/Occupied Palestinian Territory: ‘You Feel Like You Are Subhuman’: Israel’s Genocide Against Palestinians in Gaza - Amnesty International
This report documents Israel’s actions during its offensive on the occupied Gaza Strip from 7 October 2023. It examines the killing of civilians, damage to and destruction of civilian infrastructure, ...
www.amnesty.org
December 5, 2024 at 12:30 AM
Amnesty International investigation concludes Israel is committing genocide against Palestinians in Gaza @amnestyuk.bsky.social
www.amnesty.org/en/documents...
www.amnesty.org/en/documents...
Reposted by Sonya (she/her)
The @MEAssociation have not provided any adequate response to @alexisme.bsky.social’s open letter, therefore a collaborative of severe ME advocates have sent a follow up letter as well as creating a petition for Neil Riley to step down. Please sign and share:
www.change.org/p/me-associa...
www.change.org/p/me-associa...
Sign the Petition
ME Association Chair Neil Riley must step down
www.change.org
December 4, 2024 at 10:01 PM
The @MEAssociation have not provided any adequate response to @alexisme.bsky.social’s open letter, therefore a collaborative of severe ME advocates have sent a follow up letter as well as creating a petition for Neil Riley to step down. Please sign and share:
www.change.org/p/me-associa...
www.change.org/p/me-associa...
Reposted by Sonya (she/her)
Reminder to all able bodied people: you cannot always tell if someone is disabled or not…so if someone asks for accommodation, don’t assume you know better than they do…just give accommodation
Happy International Day of Persons with Disabilities! 25% of the country is disabled and yet we’re often the most ignored. It’s still legal to pay us below minimum wage, we can’t get married without losing our medical benefits, and you can become disabled at any time. Listen to us and support us.
December 3, 2024 at 9:42 PM
Reminder to all able bodied people: you cannot always tell if someone is disabled or not…so if someone asks for accommodation, don’t assume you know better than they do…just give accommodation
This #GivingTuesday I’m supporting 3 orgs close to my ❤️ The 1st 2 are ea working to find treatments/cure for a disease that currently has neither: INADcure & @openmedf.bsky.social The 3rd is @meactnet.bsky.social I would ❤️ it if you’d join me in support of 1 (or more) of these worthy orgs!
December 3, 2024 at 5:37 PM
This #GivingTuesday I’m supporting 3 orgs close to my ❤️ The 1st 2 are ea working to find treatments/cure for a disease that currently has neither: INADcure & @openmedf.bsky.social The 3rd is @meactnet.bsky.social I would ❤️ it if you’d join me in support of 1 (or more) of these worthy orgs!
Reposted by Sonya (she/her)
I will never forget following news out of Wuhan & being CERTAIN we would take steps to prevent it
Then early reports of triage medicine in Italy & thought “now we will care”
Then early reports of Long Covid. I was positive we would take chronic illness more seriously.
I hate how wrong I’ve been.
Then early reports of triage medicine in Italy & thought “now we will care”
Then early reports of Long Covid. I was positive we would take chronic illness more seriously.
I hate how wrong I’ve been.
5 years ago today: A man in Wuhan, China starts feeling ill, becoming the first confirmed case of COVID-19
December 2, 2024 at 1:56 AM
I will never forget following news out of Wuhan & being CERTAIN we would take steps to prevent it
Then early reports of triage medicine in Italy & thought “now we will care”
Then early reports of Long Covid. I was positive we would take chronic illness more seriously.
I hate how wrong I’ve been.
Then early reports of triage medicine in Italy & thought “now we will care”
Then early reports of Long Covid. I was positive we would take chronic illness more seriously.
I hate how wrong I’ve been.
For 20+ yrs I hosted Thanksgiving dinner for 25, w/more coming for dessert. I loved it despite stress from unrecognized executive function issues
Baking pies w/flaky crusts from scratch was my fave. After 15yrs I became intolerant to gluten, 🥛, soy, pork, 🥚, & anaphylactic to 🌽 derivatives 1/4
Baking pies w/flaky crusts from scratch was my fave. After 15yrs I became intolerant to gluten, 🥛, soy, pork, 🥚, & anaphylactic to 🌽 derivatives 1/4
November 27, 2024 at 9:12 PM
For 20+ yrs I hosted Thanksgiving dinner for 25, w/more coming for dessert. I loved it despite stress from unrecognized executive function issues
Baking pies w/flaky crusts from scratch was my fave. After 15yrs I became intolerant to gluten, 🥛, soy, pork, 🥚, & anaphylactic to 🌽 derivatives 1/4
Baking pies w/flaky crusts from scratch was my fave. After 15yrs I became intolerant to gluten, 🥛, soy, pork, 🥚, & anaphylactic to 🌽 derivatives 1/4
Appalling and abusive. If Dr can’t find cause of symptoms: call it somatic, dismiss further testing, and don’t permit patient/caregiver to seek second opinion.
November 27, 2024 at 2:51 PM
Appalling and abusive. If Dr can’t find cause of symptoms: call it somatic, dismiss further testing, and don’t permit patient/caregiver to seek second opinion.
I read this post last week, after watching a reel w/ ridiculous WW asking to keep politics out of booktok, & can’t get it out of my head
I’m not drawn to romance, fantasy, or “fluff” (chic lit?) and now I keep wondering why? TBF, I also don’t care for “male-focused stories about love and sexuality”
I’m not drawn to romance, fantasy, or “fluff” (chic lit?) and now I keep wondering why? TBF, I also don’t care for “male-focused stories about love and sexuality”
All Books Are Political
The book world, from publishing to reviewing to what readers pick up, is inherently political.
bookriot.com
November 25, 2024 at 11:49 PM
I read this post last week, after watching a reel w/ ridiculous WW asking to keep politics out of booktok, & can’t get it out of my head
I’m not drawn to romance, fantasy, or “fluff” (chic lit?) and now I keep wondering why? TBF, I also don’t care for “male-focused stories about love and sexuality”
I’m not drawn to romance, fantasy, or “fluff” (chic lit?) and now I keep wondering why? TBF, I also don’t care for “male-focused stories about love and sexuality”
Reposted by Sonya (she/her)
Multiple people have become sick and hospitalized on flights landing in Boston. We need to await more information to fully understand what's happening here, but your regular reminder that one of the most important times to wear a mask is when you are traveling.
November 25, 2024 at 11:24 PM
Multiple people have become sick and hospitalized on flights landing in Boston. We need to await more information to fully understand what's happening here, but your regular reminder that one of the most important times to wear a mask is when you are traveling.
Hey #pwME or #LongCovid who take #LDN - has anyone been prescribed more than 4.5 mg? After 6 mo, I’ve not noticed any difference, + or -.
I’m considering larger dose, but unsure if there is any literature to suggest this is a good idea to my doctor. Per LDN Trust, up to 10mg is considered low dose
I’m considering larger dose, but unsure if there is any literature to suggest this is a good idea to my doctor. Per LDN Trust, up to 10mg is considered low dose
November 25, 2024 at 5:46 PM
Hey #pwME or #LongCovid who take #LDN - has anyone been prescribed more than 4.5 mg? After 6 mo, I’ve not noticed any difference, + or -.
I’m considering larger dose, but unsure if there is any literature to suggest this is a good idea to my doctor. Per LDN Trust, up to 10mg is considered low dose
I’m considering larger dose, but unsure if there is any literature to suggest this is a good idea to my doctor. Per LDN Trust, up to 10mg is considered low dose
It certainly doesn’t feel like anyone around me, #pwME due to #LongCovid is being more cautious. Even my Drs at Yale aren’t masking
People of #bsky, how many of you have or know somebody with #LongCovid or #ME / #MECFS?
Does that lead you to be more cautious about (re-)infections with #Covid?
Thank you kindly for your answers and/or #Signalboost 💛😊.
#disability #publichealth #medsky
Does that lead you to be more cautious about (re-)infections with #Covid?
Thank you kindly for your answers and/or #Signalboost 💛😊.
#disability #publichealth #medsky
November 25, 2024 at 5:39 PM
It certainly doesn’t feel like anyone around me, #pwME due to #LongCovid is being more cautious. Even my Drs at Yale aren’t masking
In case anyone else has been trying to figure out #NEISvoid
Doctors can find each other via #MedSky now
And #NEISvoid stands for No End In Sight Void, created by @bennessb.bsky.social back on Twitter since that's how having chronic illness feels most of the time. 😞
Hashtags work well here too, FTW. So are an easy way to find community too.
And #NEISvoid stands for No End In Sight Void, created by @bennessb.bsky.social back on Twitter since that's how having chronic illness feels most of the time. 😞
Hashtags work well here too, FTW. So are an easy way to find community too.
November 25, 2024 at 1:39 AM
In case anyone else has been trying to figure out #NEISvoid
Reposted by Sonya (she/her)
Did you know there’s a site to search for starter packs of people to follow? Built by @mubashariqbal.com
blueskydirectory.com/starter-pack...
blueskydirectory.com/starter-pack...
Bluesky Starter Packs - Bluesky Directory
Browse a list of Bluesky Starter Packs. Discover and connect with your community on Bluesky
blueskydirectory.com
November 23, 2024 at 9:43 PM
Did you know there’s a site to search for starter packs of people to follow? Built by @mubashariqbal.com
blueskydirectory.com/starter-pack...
blueskydirectory.com/starter-pack...
When my current stash of almond flour is used up I’m going to experiment w/subbing pecan flour in my (rare, due to fatigue) grainfree baking. Pecans have less protein & carbs and *slightly* less fiber but more fat than almonds so I’m sure other ingred in almond flour based recipes will need tweaking
The climate crisis has to be addressed at the national and international level, but consumer choice plays a role. One thing we can do is switch from almonds (R in photo) to pecans (L). Both are similar in nutrition, but it is water use and geography that makes a difference. 1/4
November 24, 2024 at 7:15 PM
When my current stash of almond flour is used up I’m going to experiment w/subbing pecan flour in my (rare, due to fatigue) grainfree baking. Pecans have less protein & carbs and *slightly* less fiber but more fat than almonds so I’m sure other ingred in almond flour based recipes will need tweaking
I’ve been putting supps in morning ☕️ since Dec 11 23
11/11/24 Moved creatine monohydrate (CM) to juice or dairy kefir b4 ☕️ - works better w/carbs? CM hasn’t helped me w/fatigue or 🧠 function - planned to pull Dec 1
Past 2 days ☕️ tasted gross 😔 so pulling CM tomorrow. Hope ☕️ tastes good again #pwME
11/11/24 Moved creatine monohydrate (CM) to juice or dairy kefir b4 ☕️ - works better w/carbs? CM hasn’t helped me w/fatigue or 🧠 function - planned to pull Dec 1
Past 2 days ☕️ tasted gross 😔 so pulling CM tomorrow. Hope ☕️ tastes good again #pwME
November 24, 2024 at 6:39 PM
I’ve been putting supps in morning ☕️ since Dec 11 23
11/11/24 Moved creatine monohydrate (CM) to juice or dairy kefir b4 ☕️ - works better w/carbs? CM hasn’t helped me w/fatigue or 🧠 function - planned to pull Dec 1
Past 2 days ☕️ tasted gross 😔 so pulling CM tomorrow. Hope ☕️ tastes good again #pwME
11/11/24 Moved creatine monohydrate (CM) to juice or dairy kefir b4 ☕️ - works better w/carbs? CM hasn’t helped me w/fatigue or 🧠 function - planned to pull Dec 1
Past 2 days ☕️ tasted gross 😔 so pulling CM tomorrow. Hope ☕️ tastes good again #pwME