Bipolar in Boston

they/she, Queer Geek. Diagnosed with Crohn's in Jan 2000 at 11, with Depression in April 2006 at 17. Rediagnosed as Bipolar I in Nov 2018 at 30  

[bipolarinboston]

Mental Health Month posts from Facebook (because sharing multi year posts suck)

2023

So is it Mental Health Awareness Month? Or could it be Mental Health Acceptance Month? I guess it's a matter of education. But I was inspired by the fact that April is Autism Acceptance Month. I don't know if the sentiment is the same.

* I am out at work as much as I feel comfortable. I lead an internal DEI group and we introduce ourselves each meeting using roles outside of work. I'm a queer person who uses They/She pronouns and I'm a peer with lived mental health experience. My boss and a couple coworkers know I'm a presenter for In Our Own Voice because I invited them to present for June's DEI meeting. But I am NOT comfortable sharing my diagnosis to work (minus my friend) and I can't present myself sadly.

* About this time last year I volunteered to be a 'tech buddy' DBSA is STILL USING ZOOM. This is good for me because the commute home from Belmont after 9pm would be unbearable. Tech Buddies are the zoom host, and help take attendance and manage the speakers queue with raised hands. Going to DBSA let me know I'm not alone in a way I hadn't experienced before.

* My individual gave up her office early on in COVID and is permanently virtual. My group therapist retired in July and I had to say good bye on zoom. His replacement is private pay, but I'm using FSA funds to justify it. I started seeing my Psychiatrist in person only for him to retire 6 months after group did! I'm currently without a prescriber for the 3 time since 2016. Charlestown MGH is overloaded with patients and understaffed. The one difference this time is that I'm stable.

* I'm still running, but I started stressing about it in October, and I think my COVID bout (which was mild) is still impacting my performance. My photo a day streak is STRONG. I even called into a podcast who was doing an episode on "what works for me" because it really does help me get out the house. That and obsessing over step counts.

I enjoy making mental health content during May, but I feel like I'd just be repeating myself this month. Enough has changed from last year to write out this post. If you're still reading I bet you're very aware and I hope you're even accepting at this point.

2022

Mental Health Awareness Month is here again and I'll be posting for the third year.

In a perfect world I could be out on my public twitter. In a perfect world I could disclose online without any fear that come next job hunt, someone in HR will find that and take a pass on me. In a perfect world I could disclose at work even though I don't need any accommodations. It's not a uniform system but I've cobbled together fb, instagram, and my anonymous bipolar twitter account as safe spaces to share. I'm trying to feel less segmented but it's difficult when real world repercussions are a possibility.

Still zooming with NAMI's In Our Own Voice. They're starting to get in person presentations but it's just easier for me logistically to stay virtual. I've zoomed with plenty of places I'd never be able to get to in person.

This time last year I joined DBSA (Depression Bipolar Support Alliance) Boston, a peer led org that hosts support groups. I'm busy Wednesday nights zooming with the "Young" Adults group. A bunch of millennials and gen z folks using their lived experience as shorthand to bond. It's meant a lot to me and I'm walking with team DBSA for this year's NAMI Walk.

Covid still drags on. Last couple of Mays I wrote that I was glad I had Bipolar. And it's still true. My toolbox of coping skills is flush with things I knew, like taking baths with epsom salt, and things I've learned during the pandemic, like how I developed a running habit. My take a photo a day streak inspires me to get outside. And perhaps most importantly I can still see my prescriber, my individual and my group therapists remotely.

So happy Mental Health Awareness month. You're probably very aware at this point.

2021

I’m taking part in Mental Health Awareness Month again. I am still not out on Twitter*. I still cannot publicly disclose my bipolar, or even just 'mental illness' on an account with my full name for fear of personal and professional repercussions. In these kinds of spaces, it is much easier to navigate out as queer than out as bipolar. *This January I started an alternate anonymous twitter account so I can better engage with the neurodivergent, disabled and mental illness communities. (You'd be surprised at how much those overlap)

Before all of this began, I signed up NAMI's In Our Own Voice. You’ve probably heard about it whenever I mentioned the NAMI Walks I’m doing in a few weeks. We started zooming in August and I want to say it was one of the best decisions I made in terms of advocacy and stigma busting. I have presented to different groups, college nursing classes, one of the inpatient units at McLean Hospital, and several groups of Family to Family, the program mom took 15 years ago when I was initially diagnosed.

After over a year of Covid, I'm still GLAD I’m Bipolar. There's a collective mental health flare happening right now. But I have my diagnosis, meds, my therapy, and coping skills. I have a toolbox of things to try when I am stressed out or sliding backwards. And perhaps most importantly I have established relationships with my individual, group and my prescriber. I am so lucky that I've been able to see them remotely.

So happy Mental Health Awareness month. Now you're probably even more aware.

2020

Mental Health Month Post: I realized something: I am not out on Twitter. I can not publicly disclose my bipolar, or even just 'mental illness' for fear of personal and professional repercussions. I am more out in my queerness than in my mental health struggles. How ironic is that? I wish things were different.

When I signed up NAMI's In Our Own Voice, I was hoping to use it as a tool for greater advocacy but also to increase my "outness" as a bipolar person. Even though the training was Presidents Day Weekend, I never thought that a pandemic would put all presentations on hold.

Sure I participate in chronic illness (disability) twitter and will 'flirt' with outing myself. If you read behind the lines, check who I follow and talk to, you may be able to out me. But I talk about my crohns and humira, not lithium, and I leave therapy to my journal on patientslikeme.

But at a time like this I'm actually GLAD I am Bipolar. There's going to be a mental health flare when Covid starts to wind down. But I already have my diagnosis, meds, my therapy, and coping skills. I already have a toolbox of things to try when I am stressed out or sliding backwards. And perhaps most importantly I already have established relationships with my individual, group and my prescriber.

So happy Mental Health Awareness month. Now you're probably more aware.

[bipolarinboston]

This years post:

Happy Mental Health Month - 2024!

Still here, still bipolar, still proud!

A few things are different this year:

I'm more involved with DBSA than I've ever been. I'm still tech buddying. I'm co-captain of the NAMI Walk team, and I put my hat in for a seat on the Board.

At work I applied for a facilitating conversations program where I had to submit an application about my connections to my community. I wrote about DBSA (and NAMI) and then came out to my boss as bipolar. It felt like an appropriate time - and she took it well! Work had known I was a "peer with lived mental health experience" for a while so this wasn't a huge jump. I feel good about it and grateful to be at a job where it's even possible to feel safe coming out and not just because I need accommodations.

This time last year I was without a psychiatrist - I didn't see one until October! The whole time I was dealing with excessive thirst and no one told me that was a side effect of lithium... so now that I finally have a psychiatrist again I'm shifting meds around.

Still running, just not as often. I joined a gym for treadmill access and strength training. And I still take at least one photo a day. Took this photo of flowers today.

Happy Mental Health Acceptance/Awareness Month! I'm glad you're here!

[bipolarinboston]

Mental Health Month posts from Facebook (because sharing multi year posts suck)

2023

So is it Mental Health Awareness Month? Or could it be Mental Health Acceptance Month? I guess it's a matter of education. But I was inspired by the fact that April is Autism Acceptance Month. I don't know if the sentiment is the same.

* I am out at work as much as I feel comfortable. I lead an internal DEI group and we introduce ourselves each meeting using roles outside of work. I'm a queer person who uses They/She pronouns and I'm a peer with lived mental health experience. My boss and a couple coworkers know I'm a presenter for In Our Own Voice because I invited them to present for June's DEI meeting. But I am NOT comfortable sharing my diagnosis to work (minus my friend) and I can't present myself sadly.

* About this time last year I volunteered to be a 'tech buddy' DBSA is STILL USING ZOOM. This is good for me because the commute home from Belmont after 9pm would be unbearable. Tech Buddies are the zoom host, and help take attendance and manage the speakers queue with raised hands. Going to DBSA let me know I'm not alone in a way I hadn't experienced before.

* My individual gave up her office early on in COVID and is permanently virtual. My group therapist retired in July and I had to say good bye on zoom. His replacement is private pay, but I'm using FSA funds to justify it. I started seeing my Psychiatrist in person only for him to retire 6 months after group did! I'm currently without a prescriber for the 3 time since 2016. Charlestown MGH is overloaded with patients and understaffed. The one difference this time is that I'm stable.

* I'm still running, but I started stressing about it in October, and I think my COVID bout (which was mild) is still impacting my performance. My photo a day streak is STRONG. I even called into a podcast who was doing an episode on "what works for me" because it really does help me get out the house. That and obsessing over step counts.

I enjoy making mental health content during May, but I feel like I'd just be repeating myself this month. Enough has changed from last year to write out this post. If you're still reading I bet you're very aware and I hope you're even accepting at this point.

2022

Mental Health Awareness Month is here again and I'll be posting for the third year.

In a perfect world I could be out on my public twitter. In a perfect world I could disclose online without any fear that come next job hunt, someone in HR will find that and take a pass on me. In a perfect world I could disclose at work even though I don't need any accommodations. It's not a uniform system but I've cobbled together fb, instagram, and my anonymous bipolar twitter account as safe spaces to share. I'm trying to feel less segmented but it's difficult when real world repercussions are a possibility.

Still zooming with NAMI's In Our Own Voice. They're starting to get in person presentations but it's just easier for me logistically to stay virtual. I've zoomed with plenty of places I'd never be able to get to in person.

This time last year I joined DBSA (Depression Bipolar Support Alliance) Boston, a peer led org that hosts support groups. I'm busy Wednesday nights zooming with the "Young" Adults group. A bunch of millennials and gen z folks using their lived experience as shorthand to bond. It's meant a lot to me and I'm walking with team DBSA for this year's NAMI Walk.

Covid still drags on. Last couple of Mays I wrote that I was glad I had Bipolar. And it's still true. My toolbox of coping skills is flush with things I knew, like taking baths with epsom salt, and things I've learned during the pandemic, like how I developed a running habit. My take a photo a day streak inspires me to get outside. And perhaps most importantly I can still see my prescriber, my individual and my group therapists remotely.

So happy Mental Health Awareness month. You're probably very aware at this point.

2021

I’m taking part in Mental Health Awareness Month again. I am still not out on Twitter*. I still cannot publicly disclose my bipolar, or even just 'mental illness' on an account with my full name for fear of personal and professional repercussions. In these kinds of spaces, it is much easier to navigate out as queer than out as bipolar. *This January I started an alternate anonymous twitter account so I can better engage with the neurodivergent, disabled and mental illness communities. (You'd be surprised at how much those overlap)

Before all of this began, I signed up NAMI's In Our Own Voice. You’ve probably heard about it whenever I mentioned the NAMI Walks I’m doing in a few weeks. We started zooming in August and I want to say it was one of the best decisions I made in terms of advocacy and stigma busting. I have presented to different groups, college nursing classes, one of the inpatient units at McLean Hospital, and several groups of Family to Family, the program mom took 15 years ago when I was initially diagnosed.

After over a year of Covid, I'm still GLAD I’m Bipolar. There's a collective mental health flare happening right now. But I have my diagnosis, meds, my therapy, and coping skills. I have a toolbox of things to try when I am stressed out or sliding backwards. And perhaps most importantly I have established relationships with my individual, group and my prescriber. I am so lucky that I've been able to see them remotely.

So happy Mental Health Awareness month. Now you're probably even more aware.

2020

Mental Health Month Post: I realized something: I am not out on Twitter. I can not publicly disclose my bipolar, or even just 'mental illness' for fear of personal and professional repercussions. I am more out in my queerness than in my mental health struggles. How ironic is that? I wish things were different.

When I signed up NAMI's In Our Own Voice, I was hoping to use it as a tool for greater advocacy but also to increase my "outness" as a bipolar person. Even though the training was Presidents Day Weekend, I never thought that a pandemic would put all presentations on hold.

Sure I participate in chronic illness (disability) twitter and will 'flirt' with outing myself. If you read behind the lines, check who I follow and talk to, you may be able to out me. But I talk about my crohns and humira, not lithium, and I leave therapy to my journal on patientslikeme.

But at a time like this I'm actually GLAD I am Bipolar. There's going to be a mental health flare when Covid starts to wind down. But I already have my diagnosis, meds, my therapy, and coping skills. I already have a toolbox of things to try when I am stressed out or sliding backwards. And perhaps most importantly I already have established relationships with my individual, group and my prescriber.

So happy Mental Health Awareness month. Now you're probably more aware.

[bipolarinboston]

I have a new psychiatrist and trying to get him some records from MGH. He's so brand new... Just went through my own copy of the multiple hospitalizations. Very heavy. I don't think it helps that I'm a month out from the 5 year anniversary. I'm leaning into it but trying to not get overwhelmed and ruminate.

Hard.

[bipolarinboston]

I have a new psychiatrist who's from MGH. The clinic called last week and I zoomed with him last Wednesday. I feel safer staying in MGH. Ironically he picked up on the excessive thirst right away and wants to adjust meds. I reported it a year ago and turns out it was a side effect that no one told me about. Even my GI knew. 😐

So I'm increasing the dose of lamictal that I actually wanted to wean off of in order to reduce the lithium. I am trying to track my water on Garmin. To have a comparison. There's also my lab that he said was borderline high.

I guess I'd rather deal with a temporary MGH psychiatrist than a brand new private one. We'll see how the adjustment goes.

For once I wish I still had patients like me.

[quiet-doll]

recently saw ppl discuss whether they put their medicines in a kitchen cabinet or a bathroom cabinet and i was shocked by the fact that many ppl said kitchen cabinet. so now i need you to reblog this and say where you keep yours

[identitty-dickruption]

my utopia has disability in it. my utopia includes free healthcare and no-questions welfare and state-funded carers. my utopia includes building requirements that centre disabled bodies — ramps and lifts and dimmer switches and braille signs. my utopia has disability in it. because without disability, it’s not much of a utopia at all

[identitty-dickruption]

we have to give ourselves permission to imagine disabled futures. we’ve been told, either implicitly or explicitly that we shouldn’t exist, so it becomes hard to imagine a perfect world populated with people like us. but loving ourselves and our communities is about being able to imagine a future that has us in it. there is a perfect world where people are happily disabled. and that’s what I’m fighting for — the chance that we can slowly take steps towards that world. imagine disabled futures

[bipolarinboston]

I have a new psychiatrist and trying to get him some records from MGH. He's so brand new... Just went through my own copy of the multiple hospitalizations. Very heavy. I don't think it helps that I'm a month out from the 5 year anniversary. I'm leaning into it but trying to not get overwhelmed and ruminate.

Hard.

[bipolarinboston]

Well that didn't last long. Saying "day three" feels disingenuous but I don't like going out of order.

Twitter's in a bit of a downfall. I have a main account and this account there. So I don't know what I'm going to do but I don't want to abandon it. Found a lot of community. But it feels hollow whenever I tweet. A void.

I have main on bluesky and am trying this less segmented thing - basically more disability talk, vague medical stuff but nothing bipolar explicit. I don't think anyone knows which twitter alternative will take off. mastodon was flash in the pan. Maybe bluesky, will stay like twitter enough as actual "X" is in free fall.

Speaking of medical stuff... 1) I got Covid end of last year and freaked out. Went to the clinic in February and got a normal EKG. They didn't care about the Covid, but I called about a high heart rate and that made them pay attention 🙄

3) they checked my TSH and it was 3 so Perfectly normal for someone who had been borderline 5 earlier...

4) Earlier this month I ask for another TSH thinking it had been a year - forgot about February. 4b) I was worried about something else when I requested the labs.

5) in less than a year I went from 4.5 to 0. And that meant a return trip to make sure it wasn't a glitch, and then a bunch of secondary tests. Looking forward to that bill!

6) maybe it's lithium induced but they don't know for sure so I'm still taking it. Which is good because I DON'T HAVE A PSYCHIATRIST. I get to schedule an ultrasound and get an endocrinology appointment set up.

7) hyperthyroidism could explain the high heart rate except I'm just normally elevated and it was before my TSH tanked. I don't have Pots level though.

[bipolarinboston]

Two weeks later I get "it's lithium induced inflammation it's fine because it'll clear up on its own."

Nice to solve the mystery. Horrible time to get an outside MGH psychiatrist but that's all that was available. MGH literally gave me a list of outside clinics.

[bipolarinboston]

I need to journal more and I keep forgetting about this place. There's someone on main who I follow and that's it.

Had an Alice appointment where I ran out of things to talk about. She suggested I make a list beforehand.

Okay ...

It's almost a year since I started using my rainbow journal mostly for post appointment summary/brain dump. I know I have Alice notes, whenever she uploads them but sometimes she and I have different conclusions about what I talked about. I also don't have any access to Allison's group notes. Never asked Doctor Leone from the previous group. I'm sure those are getting shredded year by year.

Because of a scope (have to be in the same building as Blake 11) and a new psych intake I've been thinking about my 5 year anniversary a bit early. I struggle with walking the line between rumination and commemoration for the big ones. January NWH (first admit) and November Bipolar Birthday.

I wish there was a number to call for help in getting specific records. I worry I'm going to firehose my new therapist. He'd like labs and hospital records.

[bipolarinboston]

Well that didn't last long. Saying "day three" feels disingenuous but I don't like going out of order.

Twitter's in a bit of a downfall. I have a main account and this account there. So I don't know what I'm going to do but I don't want to abandon it. Found a lot of community. But it feels hollow whenever I tweet. A void.

I have main on bluesky and am trying this less segmented thing - basically more disability talk, vague medical stuff but nothing bipolar explicit. I don't think anyone knows which twitter alternative will take off. mastodon was flash in the pan. Maybe bluesky, will stay like twitter enough as actual "X" is in free fall.

Speaking of medical stuff... 1) I got Covid end of last year and freaked out. Went to the clinic in February and got a normal EKG. They didn't care about the Covid, but I called about a high heart rate and that made them pay attention 🙄

3) they checked my TSH and it was 3 so Perfectly normal for someone who had been borderline 5 earlier...

4) Earlier this month I ask for another TSH thinking it had been a year - forgot about February. 4b) I was worried about something else when I requested the labs.

5) in less than a year I went from 4.5 to 0. And that meant a return trip to make sure it wasn't a glitch, and then a bunch of secondary tests. Looking forward to that bill!

6) maybe it's lithium induced but they don't know for sure so I'm still taking it. Which is good because I DON'T HAVE A PSYCHIATRIST. I get to schedule an ultrasound and get an endocrinology appointment set up.

7) hyperthyroidism could explain the high heart rate except I'm just normally elevated and it was before my TSH tanked. I don't have Pots level though.

[bipolarinboston]

"Day Two"

Today I keep flitting around my phone (open social media apps one after another. Repeat.) and a few days after I deleted I keep thinking of checking patients like me. Even though I gave them what could be the biggest flounce ever as I requested a delete. Practically daring them to reach me via email. I'm sure that team is breathing a sigh of relief.

I intend to be done bringing PLM up here. But I can't make promises it'll be completely absent. I got the one friend I met on there (who let me know about DBSA) to also delete so I'm worried she'll rely on me text wise. She has in the past and it breaks my bandwidth usually.

I tried writing something about what PLM meant to me at the start. This may be a bit rambling:

After my first mental health flare in 2017 I felt really isolated. I couldn't talk about it because of shame, and everything social media wise was my real name. My therapist recommended a website called patientslikeme that had forums. I hung out in the mental health forum for more than a few years. Journaling online in a safe space made sense to me because I could access it on my phone too.

But then I started talking about bipolar on instagram and fb, I created a separate anon twitter account to feel less boxed in. I started listening to Depresh Mode and found the fb group to go with it. I joined NAMI and DBSA. I am not as isolated as I was in 2017. I realized patientslikeme just didn't fit me anymore and probably hadn't for a while.

Still I was glad I could journal there. I ended up copying each journal post into a word doc for posterity. When I asked them to delete my account I realized It's the first "social media" account I can remember actually deleting and not just abandoning.

[bipolarinboston]

"Day 1"

I put my money where my mouth is and actually deleted PLM. (It hurts them more than if I just abandon it because they can still count me as an active member - I saw accounts that said "last seen Feb 2020" etc)

They don't miss me. I am just trying to adjust where I hang out online and how long. Lots of mindless scrolling unfortunately. I've got writers block for bluesky/twitter so I'm not posting much.

Also have writers block on a poem.

Need a new journal tag

[bipolarinboston]

Why am I on PLM still? 1 online friend. But it's never been an equal relationship. She'll reach out when she needs help, wants to vent. Never mind that her psychiatrist's office is way more available than mine ever was. I guess knowing a peer is good but I can't handle too much of her without getting down myself. I don't know if I should ghost both her and PLM. But I'm still there to keep up with her journal thread. She's only there for herself, doesn't follow or interact with others unless they are there. 🫣

[bipolarinboston]

This is what I'm doing:

I'm yelling into the void. Social media has definitely felt fractured and more void than usual. My mastodon exists but I don't spend time there. I'm putting my main on bluesky. I signed up for threads without reading the TOS and regret it. Now ALL my profiles are in danger of being compiled and linked to an account with my name etc.

Also After each group/individual session I'm trying to write down what happened or what I talked about. I kept forgetting.

I should use this space as a journal? I'm still mourning and complaining about PLM.

[bipolarinboston]

I'm looking for a new place to move. I'm finally ready, it was mom who saw it first and nudged me to start looking last fall. And there's a place I've gone the furthest (taken measurements but no credit check) so far. Met the roommates in person (twice) and they know I have Crohn's. But back into the closet I go for the bipolar. No way I'll tell them at the start. Probably later. I'll have to keep my meds in my room for the first time. 🫣

[bipolarinboston]

I need to be better at journaling. I do have a habit of writing down a quick summary after therapy. I don't have access to notes for group. And Alice my individual will upload something that's distant sounding because it's for insurance purposes.

So why aren't I using this space like I intended? Twitter is circulating the drain, mastodon is a void across servers. I sit on paitentslikeme as much as I want to ghost them because of 1 person I follow. I don't want to be the text friend they unload on, because it's too much. I can only handle so much and I can never reciprocate. So it's best if I follow their journal on there and just reply react as I can.

[bipolarinboston]

PatientsLikeMe did an overhaul and wrecked the forums. Hard to access long threads, reply to the correct post, and link directly. I know there's bugs but I'm worried the not linking to posts directly is by design. (The timestamp was hyperlinked previously)

Want to close/archive my thread that I've used as an online journal. Drama went down, it got petty. I am still around but I think I just proved the other person right 🙄 if I'm closing shop. But I don't want to delete my account just yet.

I may use here. Tag something so I'll find them later?

[bipolarinboston]

It's not just me other members are pissed. My journal over there is archived. I'd already copied everything over to a doc for myself. Past me knew there'd come a time where I'd want access to that. It's the longest and most involved journal I've worked on.

[bipolarinboston]

I'm still on PLM. I'm not sure why. Maybe what kept me there was utterly destroyed. Maybe I never belonged and I was just there out of spite. This place should be better but I'm not using it much. I did start recording some post therapy notes in an actual physical journal but I don't use it mid week.

[stele3]

Tumblr ND poll

Please respond and reblog for a large sample size.

I am…

Neurodiverse (ADHD, autism) and Dr.-diagnosed

Neurodiverse and self-diagnosed

Neurotypical

Just want to see results

Voting ended onFeb 17, 2023

[bipolarinboston]

This is tricky. I consider myself neurodivergent but I never want to occupy Autistic and ADHD spaces since I'm neither. I know I have a trait or two, and I believe my brain's wiring has been affected by having mental illness and taking meds for half my life but I also know that's not enough to even self diagnose.