alwaysinflannel - Network

It’s been a few months since I’ve posted. Here’s a Lucas pic to make up for it.

It’s been a few months since I’ve posted. Here’s a Lucas pic to make up for it.

EDS, joint stability, suggestions welcomeAny EDS (diagnosed or not) people know how to stabilize a shoulder? It isn't dislocating, but...

EDS, joint stability, suggestions welcome

Any EDS (diagnosed or not) people know how to stabilize a shoulder? It isn't dislocating, but has been subloxing like it's going out of style for 2 weeks now. PT and muscle strengthening aren't options right now since I'm not getting calories/protein enough to maintain muscle. Seems like I'm looking for a new brace?

#NEISvoid #EDS

Typed then deleted a post because it was too depressing. That's where I am. Hoping others are doing ok.

Typed then deleted a post because it was too depressing. That's where I am.

Hoping others are doing ok.

Wondering if any others with MCAS or other mast cell disorders have histamine issues with Dronabinol (Marinol). Unfortunately, it’s my...

Wondering if any others with MCAS or other mast cell disorders have histamine issues with Dronabinol (Marinol). Unfortunately, it’s my only legal option so not sure if it’s a THC thing or a synthetic additive thing.

#MCAS #NEiSvoid

Participating in a study run by a major hospital here and apparently the 2 tubes of my dna (spit variety, gross) have not been received and...

Participating in a study run by a major hospital here and apparently the 2 tubes of my dna (spit variety, gross) have not been received and are floating around the postal system. If someone took them, they're going to be really disappointed when they open that package.

A little ranty, rare medicalI do not want to be a zebra or a unicorn. I do not want to find out about conditions no one has ever heard of...

A little ranty, rare medical

I do not want to be a zebra or a unicorn. I do not want to find out about conditions no one has ever heard of because they are "1 in a million" and don't recur, but surprise, I'm even MORE special and it's happening yearly and the damage is permanent each time. I really, really, want to retain my vision and be boring. I'm ok with weird. Just not, surprise, the steroids are done and now your stomach doesn't work weird.

#NEISvoid #ChronicIllness

2/This was announced like it's definitely happening at the end of the month... which is really close, but I'm hoping they come to...

2/
This was announced like it's definitely happening at the end of the month... which is really close, but I'm hoping they come to their senses first.
They have a block feature, which will be totally useless if anyone can search from OUTSIDE the service.

Ideally, they'll introduce a "private" option for accounts, but it's not their 1st priority.

Watching it unfold and will update.

#Privacy #Bluesky #Safety #SocialMedia

1/Ok. Bluesky news. There's a reason I'm active on multiple platforms. I know any one of them can melt down in a moment. From the...

1/
Ok. Bluesky news. There's a reason I'm active on multiple platforms. I know any one of them can melt down in a moment.
From the official Bluesky account:
"Exciting news: We’re taking another step to making Bluesky an open network for public conversations.

Around the end of this month, we’ll release a public web interface. With this, you’ll be able to view posts on Bluesky without being logged in on an account."

#Privacy #Security #Bluesky #SocialMedia

I've come to the conclusion that I feel less lonely when I am actually alone than I do around people who cannot (or will not) comprehend...

I've come to the conclusion that I feel less lonely when I am actually alone than I do around people who cannot (or will not) comprehend what I am going through. Especially when they are my only IRL support and have witnessed so much of it.
#ChronicIllness #NEISvoid

Immune System, VaccinesNot looking forward to 2 weeks of Prednisone, but would like to keep the inflammation in my retina from causing...

Immune System, Vaccines

Not looking forward to 2 weeks of Prednisone, but would like to keep the inflammation in my retina from causing further permanent damage.
It's gonna be weird not getting a flu shot this year. 1st time since the 90's, but my immune system is waiting for any reason to burn shit down right now. And even though it played a part in this, I'm so glad I got the Novavax before the flu shot. If I had to stop after one, that was the one I needed most.
#NEISvoid #ChronicIllness

Question for people who have low blood pressure issues. Any recommendations for home blood pressure readers? My current one is giving me an...

Question for people who have low blood pressure issues. Any recommendations for home blood pressure readers? My current one is giving me an error message when it gets super low because it thinks I can't possibly have the cuff on right (I do). Thanks in advance.

#NEISvoid #POTS #dysautonomia

Novavax vaccine Day 2Novavax day 2: Switching vaccines was definitely the right decision for me. Arm is still a little sore, but not even as...

Novavax vaccine Day 2

Novavax day 2: Switching vaccines was definitely the right decision for me. Arm is still a little sore, but not even as bad as flu shot sore. I’m pretty much back to my baseline of symptoms. Will watch for anything new weird, but am pretty much back to normal weird.

#Vaccine #COVID #Novavax

Novavax vaccine Day 1Novavax Day 1: Arm is a little sore, joints and my muscles are starting to get the ache that is normal for me at the...

Novavax vaccine Day 1

Novavax Day 1: Arm is a little sore, joints and my muscles are starting to get the ache that is normal for me at the start of EDS and ME flares, and I'm really tired. The only actual pain is my Interstitial Cystitis flaring.

For reference, all of these things occur frequently with me and I expect this after vaccines. Nothing extreme or unexpected today.

#Vaccine #COVID #Novavax

Got my Novavax this morning! It was super quick. I was only gone from the house for 15 minutes. Publix pharmacy for the win. #COVID #Vaccine...

Got my Novavax this morning! It was super quick. I was only gone from the house for 15 minutes. Publix pharmacy for the win.

#COVID #Vaccine #Novavax

I feel so bad for a sibling right now. I was always the only one in my family with ALL of the weird and difficult medical stuff. No one else...

I feel so bad for a sibling right now. I was always the only one in my family with ALL of the weird and difficult medical stuff. No one else knew what it was like to have to advocate for themselves constantly with doctors, not get answers/adequate treatment and I was glad. I didn't want them experiencing this.

Now it's happening. Auto-immune issues, inflammation, histamines. And a clueless primary doctor. I hope so much that they can have it easier than it usually is.

#MECFS #ChronicIllness

Good morning. About to meet with my therapist virtually. I’m sure we will be discussing the incident last week when I got a call telling...

Good morning. About to meet with my therapist virtually. I’m sure we will be discussing the incident last week when I got a call telling me my psych provider left the practice abruptly a couple of hours before my appointment and no one is accepting new patients. Because it’s not like I have medical abandonment issues or anything. *sarcasm

I’ll handle it. I always do. Hoping everyone gets through the things they’re dealing with today too.

Think the Byzantine and Medieval images of Jesus (I am only comparing hands here lol) with the first 2 fingers up. The docs have said it...

Think the Byzantine and Medieval images of Jesus (I am only comparing hands here lol) with the first 2 fingers up. The docs have said it isn't the Duchenne (sp?) contracture thing. I have hEDS so usually I can bend all of my fingers way back. #NEISvoid #medical

If anyone has any ideas, I have been trying to figure this out with MDs for several years now and it's only getting worse. My hands...

If anyone has any ideas, I have been trying to figure this out with MDs for several years now and it's only getting worse. My hands randomly decide to not open in a painful way and it can stay this way for days, weeks, months. Then it stops. But right now I only have full use of thumb and first finger of each hand. They feel tight. I have EDS and when this happens, my inflammatory markers are even higher than usual. Sometimes my spine also gets stiff at the same time as hands.
#NEISvoid #medical

Pandemic Rant, FamilyCan't wait to see the pictures her friend, a chronic social media picture with no mask at events poster, puts up....

Pandemic Rant, Family

Can't wait to see the pictures her friend, a chronic social media picture with no mask at events poster, puts up.

Every time I think I feel the most hopeless and left behind, I find another level. I hope like hell she doesn't get sick. She cannot get sick. And I'm angry for having to spend my energy worrying about this.

I wonder what kinds of things other people have had passed down from their elders. What did my Grandmom teach me? Solidarity with people...

I wonder what kinds of things other people have had passed down from their elders. What did my Grandmom teach me? Solidarity with people marginalized for any reason, poker, and lots of curse-words. I miss her.

#Family #Ancestors #Grateful