Lavender (she/her)
@lavender63.bsky.social
Managing my chronic illnesses, the latest being long covid, learning about disability justice, and appreciating nature.
3 years later and I have a POTS diagnosis! I know this will make for a challenging second half of life, but today I’m celebrating having a name for it. #LongCovid
November 11, 2025 at 1:50 AM
3 years later and I have a POTS diagnosis! I know this will make for a challenging second half of life, but today I’m celebrating having a name for it. #LongCovid
I think Mestinon is helping my long covid PEM! I took on a huge home project yesterday and was ready to wake up to flu like symptoms. No sore throat, no fever/chills. Really sore muscles and a mild headache. Hopefully this holds true for tomorrow too 🤞🏻
October 13, 2025 at 3:16 AM
I think Mestinon is helping my long covid PEM! I took on a huge home project yesterday and was ready to wake up to flu like symptoms. No sore throat, no fever/chills. Really sore muscles and a mild headache. Hopefully this holds true for tomorrow too 🤞🏻
I’ve been frugal after having to take a year off work because of long covid. But this year I decided to invest in seeing some specialists. I’m nervous about what my upcoming bills will be but I hit my deductible today so hopefully that will help.
September 27, 2025 at 12:08 AM
I’ve been frugal after having to take a year off work because of long covid. But this year I decided to invest in seeing some specialists. I’m nervous about what my upcoming bills will be but I hit my deductible today so hopefully that will help.
Woah I got a call today that I could do autonomic testing in a week! I thought I’d be lucky to get in this year. I’m interested to see how I fare in the tilt table test. I failed the NASA lean test at minute 9.
September 25, 2025 at 11:50 PM
Woah I got a call today that I could do autonomic testing in a week! I thought I’d be lucky to get in this year. I’m interested to see how I fare in the tilt table test. I failed the NASA lean test at minute 9.
On the verge of happy tears. Finally saw an autonomic neurologist that was not phased by long covid and is ordering blood work, autonomic testing, and having me try Mestonin. Check out local Dysautonomia groups for people in your area. I waited a year for this appt and damn was it worth the wait.
September 19, 2025 at 1:32 PM
On the verge of happy tears. Finally saw an autonomic neurologist that was not phased by long covid and is ordering blood work, autonomic testing, and having me try Mestonin. Check out local Dysautonomia groups for people in your area. I waited a year for this appt and damn was it worth the wait.
Rationing heart medication because a specialist wants me to get it from my primary care form now on, with zero notice 😡
September 18, 2025 at 2:43 PM
Rationing heart medication because a specialist wants me to get it from my primary care form now on, with zero notice 😡
The stars aligned today and I cleaned out my shed, despite my long covid. Yesterday I increased my LDN, resulting in an energy boost. It was not super hot. Ivabradine kept my HR in check. And I have off work tomorrow to rest. It felt so good to be active. But these stars align infrequently.
August 31, 2025 at 11:40 PM
The stars aligned today and I cleaned out my shed, despite my long covid. Yesterday I increased my LDN, resulting in an energy boost. It was not super hot. Ivabradine kept my HR in check. And I have off work tomorrow to rest. It felt so good to be active. But these stars align infrequently.
First bit of good news at a Dr appt! I became prediabetic after covid, and following three years of hard work + meds my numbers are normal again. 🙌🏻 Now to sort out my other long covid symptoms. Has anyone had luck addressing swollen and painful lymph nodes under the jaw?
August 28, 2025 at 1:42 AM
First bit of good news at a Dr appt! I became prediabetic after covid, and following three years of hard work + meds my numbers are normal again. 🙌🏻 Now to sort out my other long covid symptoms. Has anyone had luck addressing swollen and painful lymph nodes under the jaw?
This week marks 3 long, miserable years of long covid. It’s been awful. And I’m also really proud of what I’ve been able to endure and the lessons I’ve learned along the way. And of course the drop in barometric pressure is kicking my ass this week just for fun.
August 23, 2025 at 12:43 AM
This week marks 3 long, miserable years of long covid. It’s been awful. And I’m also really proud of what I’ve been able to endure and the lessons I’ve learned along the way. And of course the drop in barometric pressure is kicking my ass this week just for fun.
So far I’m loving Ivabradine. No side effects apart from needing some extra sleep! Body battery increasing! Taking it for pots-like symptoms. Yellow arrow is when i started. #longcovid
July 26, 2025 at 12:43 PM
So far I’m loving Ivabradine. No side effects apart from needing some extra sleep! Body battery increasing! Taking it for pots-like symptoms. Yellow arrow is when i started. #longcovid
Trying Ivabradine for my long covid pots-like symptoms. My HR spiked when I checked on my garden on this hot night but I don’t feel terrible after. I’m so very cautiously hopeful.
July 17, 2025 at 2:05 AM
Trying Ivabradine for my long covid pots-like symptoms. My HR spiked when I checked on my garden on this hot night but I don’t feel terrible after. I’m so very cautiously hopeful.
What an impossible task, to communicate the last three years of struggle in a short appointment. #longcovid
July 15, 2025 at 1:26 AM
What an impossible task, to communicate the last three years of struggle in a short appointment. #longcovid
My friend said “how are you?”
I said it’s raining.
She said that doesn’t sound bad as long as it’s short-lived.
I realized I was actually in a lot of pain but it’s hard to talk about that so I substituted in the rain. 🙃
Figuring out how to live with pain and chronic illness is tough.
I said it’s raining.
She said that doesn’t sound bad as long as it’s short-lived.
I realized I was actually in a lot of pain but it’s hard to talk about that so I substituted in the rain. 🙃
Figuring out how to live with pain and chronic illness is tough.
May 9, 2025 at 7:51 PM
My friend said “how are you?”
I said it’s raining.
She said that doesn’t sound bad as long as it’s short-lived.
I realized I was actually in a lot of pain but it’s hard to talk about that so I substituted in the rain. 🙃
Figuring out how to live with pain and chronic illness is tough.
I said it’s raining.
She said that doesn’t sound bad as long as it’s short-lived.
I realized I was actually in a lot of pain but it’s hard to talk about that so I substituted in the rain. 🙃
Figuring out how to live with pain and chronic illness is tough.
I failed the NASA lean test in minute 9. My first set of real data for long covid and POTS. I’m feeling two things - I know it’s a serious issue and that’s scary but I’m also happy to have my health challenges affirmed.
March 29, 2025 at 2:20 AM
I failed the NASA lean test in minute 9. My first set of real data for long covid and POTS. I’m feeling two things - I know it’s a serious issue and that’s scary but I’m also happy to have my health challenges affirmed.
I am a part of a Long Covid study on Thursday. I am holding my breath hoping it won’t be cancelled with these budget cuts. WTF.
March 26, 2025 at 1:40 AM
I am a part of a Long Covid study on Thursday. I am holding my breath hoping it won’t be cancelled with these budget cuts. WTF.
It is so fitting that I’m randomly in a major MCAS flare for Long Covid Awareness Day. On the upside I sat in the sun today and that was great.
March 14, 2025 at 11:22 PM
It is so fitting that I’m randomly in a major MCAS flare for Long Covid Awareness Day. On the upside I sat in the sun today and that was great.
I just got the flu vaccine. It is surreal how I can feel my body reacting to it. And uncanny how similar that reaction feels to a bad day with long covid. There’s a heaviness in my chest, I’m not breathing deeply, my muscles and joints hurt.
March 2, 2025 at 5:06 PM
I just got the flu vaccine. It is surreal how I can feel my body reacting to it. And uncanny how similar that reaction feels to a bad day with long covid. There’s a heaviness in my chest, I’m not breathing deeply, my muscles and joints hurt.
I’m realizing I might need to adjust my language about my Long Covid. I leave my house once a week and experience the severe symptom of internal tremors. I know it can be so much worse, but I think especially to Drs. I’m telling a more optimistic story.
February 20, 2025 at 3:18 AM
I’m realizing I might need to adjust my language about my Long Covid. I leave my house once a week and experience the severe symptom of internal tremors. I know it can be so much worse, but I think especially to Drs. I’m telling a more optimistic story.
I am retraining my brain to eat in ways that improves my blood sugar. It is so hard but I’m making tiny steps forward.
January 15, 2025 at 12:42 AM
I am retraining my brain to eat in ways that improves my blood sugar. It is so hard but I’m making tiny steps forward.
I know people worry about heat pumps not keeping up. I’m running one with a -6 windchill and it’s heating a large space to 65 F (but can’t go beyond that). When it gets a lot lower I light a fire to supplement, but for me a heat pump is perfect, as we don’t get many days below -10.
January 9, 2025 at 1:09 AM
I know people worry about heat pumps not keeping up. I’m running one with a -6 windchill and it’s heating a large space to 65 F (but can’t go beyond that). When it gets a lot lower I light a fire to supplement, but for me a heat pump is perfect, as we don’t get many days below -10.
One week on a very low dose of naltrexone (0.25mg) and my resting heart rate is lower, my HR variability is higher, and I feel more like myself. Some symptoms remain, but it’s been a promising first week of this new long covid experiment!
January 4, 2025 at 12:50 AM
One week on a very low dose of naltrexone (0.25mg) and my resting heart rate is lower, my HR variability is higher, and I feel more like myself. Some symptoms remain, but it’s been a promising first week of this new long covid experiment!
I felt great today. I only wish I knew why so I could try and make it routine. But it’s nice to know my body can feel good despite long covid, even if it’s fleeting.
December 3, 2024 at 4:13 AM
I felt great today. I only wish I knew why so I could try and make it routine. But it’s nice to know my body can feel good despite long covid, even if it’s fleeting.
The podcast “What if we get it right” is SO good! It is hopeful and acknowledges reality of the challenges people face today. I listened for the climate chat and stayed for the wisdom. Highly recommend!
November 24, 2024 at 8:12 PM
The podcast “What if we get it right” is SO good! It is hopeful and acknowledges reality of the challenges people face today. I listened for the climate chat and stayed for the wisdom. Highly recommend!
Book rec for those of us avoiding stress - I just listened to the two-book Monk and Robot series by Becky Chambers are they are delightful, gentle, hopeful, and interesting. A perfect read for disabled folks like me trying to rest and calm our nervous systems.
November 18, 2024 at 1:07 AM
Book rec for those of us avoiding stress - I just listened to the two-book Monk and Robot series by Becky Chambers are they are delightful, gentle, hopeful, and interesting. A perfect read for disabled folks like me trying to rest and calm our nervous systems.
Reposted by Lavender (she/her)
We all have two possible futures: we die young or we live long enough to become disabled.
A more accessible world benefits everyone, whether the issue is n95s in healthcare to reduce hospital-acquired illness or easier mobility in public spaces.
Disability justice is community care and self care.
A more accessible world benefits everyone, whether the issue is n95s in healthcare to reduce hospital-acquired illness or easier mobility in public spaces.
Disability justice is community care and self care.
October 13, 2024 at 3:08 PM
We all have two possible futures: we die young or we live long enough to become disabled.
A more accessible world benefits everyone, whether the issue is n95s in healthcare to reduce hospital-acquired illness or easier mobility in public spaces.
Disability justice is community care and self care.
A more accessible world benefits everyone, whether the issue is n95s in healthcare to reduce hospital-acquired illness or easier mobility in public spaces.
Disability justice is community care and self care.