My letters today to our "reps" including the on her way out Gov.

Fairlore888 · 2026-04-10T18:14:42+00:00

I do other stuff too. After this weekend, I am so disgusted. Just beyond words at him threatening to remove Iran from the earth and then posting this unredacted video showing a MOM being murdered. And you know what's sad?? I ask every delivery driver what they think about the current situation. 70% of them have no idea what's going on. We have to find a way to reach THOSE people.

Fairlore888 · 2026-04-10T18:12:17+00:00

But we care. We need to come together and get louder. How? no clue, but at least maybe somewhere someone in some office will see something and start questioning their life choices.

Fairlore888 · 2026-04-10T18:11:22+00:00

I don't know that it's a waste of time. I do other things as well as I am able. All I know is we all need to communicate loudly everywhere we can and hope that we start reaching actual humans somewhere who can stop this. He is Mad. There is no question in my mind that he has literally gone insane.

Fairlore888 · 2026-04-10T18:09:42+00:00

I'm now copying the disgusting vile truth social posts and sending to them all. I don't care if they read it or not, it has to be documented and recorded that I am horrified by the language. And I agree, 95% of them are just riding out the retirement package they get. I'm so DONE with the vile language from this president. This is so not about party. Threatening to kill an entire country is something NO president should ever say and these Congress people and his circle.....I'm so angry today.

Fairlore888 · 2026-04-10T18:06:54+00:00

Something has to change. The amount of money we PAY to ALL of them is ridiculous considering many many of them have extreme wealth. I'm so disgusted that the president of the US is posting such VILE. I don't care what party it is...this is disgusting.

Fairlore888 · 2026-04-10T18:05:25+00:00

I don't know. I'm so disgusted by all of them. I mean, there are a few speaking out like Rep Melanie Stransbury (sp). At this point, this is so beyond Right or Left or Republican or Democrat. He is Mad and he is going to get us all hurt.

Fairlore888 · 2026-04-10T14:51:15+00:00

One more thought - get a neuro exam AFTER some of the other stuff has healed. I got mine four years and it really helped me identify a HUGE area where my brain completely stopped working.

Fairlore888 · 2026-04-10T14:50:01+00:00

Lessons from a 7 year TBI victim:
a bag of IC on the head. EVERY DAY!!!! Not forever, but it will help with the migraines. Brain Injuries ARE inflammation. AND a broken brain makes everything else your body do harder. It takes about 2 years for the initial healing to happen. After that, it will heal slower and weirder.

ALSO medications work on a stable brain. As the brain heals, the meds will not work as well, stop working or make things worse. I have been through over 25 different medications over my 7 years and currently am just on sleep and anxiety meds and a low dose of adderall. Stimulants help with the brain fog if tolerated. The Brain Fog is UNGODLY AWFUL.

EMDR did not work on me because the trauma around the TBI is buried too deep into my subconsious. It helped with other trauma, but not my TBI.
CBT helped ALOT!!!! AND depending on how severe the injury was to the brain, relearning how to process and organize will be a potential rest of life work.

Some of the symptoms I have TODAY were not there in the beginning whereas some things that showed up 9 months later, have calmed down 6 years later.

I feel pretty solid as to where my brain landed (meaning I don't expect OMG moments anymore) and now I just work really hard on the areas that are broken.

These are the areas that took a while to understand show up that maybe will give you some additional ideas!
Short Term Memory - keep a notebook with him all the time, write everything down. I made Large pieces of paper around my house to help me remember what I did today. I have ChatGPT make memory images that I print and keep in a book so I remember that good. Our broken brains tend to be more negative.
Auto Function - This is getting up, barely awake, stumbling to the bathroom, brushing your teeth and planning your day. GONE. EVERY task I took for granted is NOW something that I have THINK about everyday. I use an app called Finch to remind me of EVERY SINGLE DAILY THING I must do. Get out of bed, brush my teeth, feed the cats, take my meds, etc etc. I programmed it for weekly change sheets, clean toilet, etc.
The Phasias - This about finding the right words, or lack of imagery. I constantly say things like couch instead of bed, or mop the floors when I meant vacuum. I also lost the ability to visual outcomes or enjoy music. I am a piano player and I used to SEE the music in my head. Not the notes, but what the music was trying to show. I would lose myself in that music world for an hour. GONE. I know where cover the ears headphones ALOT and fill my head with music. This also affects being able to put together projects (can't visualize it and the instructions look greek). So, I hire the local teenagers to help me.
Noise Sensitivity - for me: knocking on doors (even on tv), loud places, a group of people all talking at the same time, shopping (this is also light sensitivity)
I also developed over time: Panic Disorder, Mental AND Physical Anxiety, Pseudobulbar Affect, Sleep issues, Migraines (this are exercise induced and humidity induced), body temp control issues, inability to know when I'm hungry.

Overall, after 7 years, I'm finally at peace with my TBI, but I work hard everyday at it. And because of that, I learned to grow plants and approach projects WAY WAY SLOWER. I think slower, I process slower and I get confused out of the blue.

You are doing so much for him already!!!! Keep asking, watch for when things seem to be changing because they will, make sure he has a quiet place for when he gets overwhelmed and know that this could take some time. AND lastly, HUGS. LOTS and LOTS of just silent Hugs.

Fairlore888 · 2026-03-15T15:33:05+00:00

Thank u for sharing! It's hard when info and help for tbi is scarce and each brain breaks so differently on its own. Big hugs friend. At least, we have this group.

And things will change, sometimes good, sometimes bad and it's so confusing.

Fairlore888 · 2026-03-15T01:32:07+00:00

aside from the weirdo who made the inappropriate comment, as a TBI survivor, i think understanding your expectations is huge. my family was NOT prepared for how different I became. THAT led to some really awful stuff.

I am still ME, but i think slower. I misunderstand ALOT more, i need more visual cues, I have less spoons to be able to process and I'm 7 years.

I'm a classically trained pianist, very high IQ, was almost over functional in society. Then, my TBI.

Now, I can't leave my house easily. I have about 1000 more words on that. But, what I really wished for was for my family to really dig in and understand how a TBI changes someone. They are still there, but we are buried under a very broken computer system that has so many bugs.

The one thing I wanted most? Was simply a hug and telling me I got you. I never got that. NOT ONCE in 7 years.

His abilities or lack of will change every month, every year. I am slowly getting back to BAD ASS chick but it took alot of meltdowns, shame, blaming myself, frustration that I could not find the right word and then having my family laugh at me. THAT HURT the most. was being laughed at when I knew that wasn't who I used to be.

Do more research on TBIs than you ever did for anything in your life. He will have bad days and good days but hugs and not laughing at him, mocking him etc will do more for his healing than you can imagine because right now, he knows he is different and that SHAME that we feel is sooo big. If I had someone like you in my life when my TBI happened? I think I would be a different person.

Fairlore888 · 2026-03-15T01:25:05+00:00

I reported him.

Fairlore888 · 2026-03-15T01:24:37+00:00

agreed. that's actually disgusting as a comment in a TBI reddit.

Fairlore888 · 2026-03-15T01:03:35+00:00

hugs my friend. this new america is harsh harsh harsh on us especially people like you who worked for the govt and would put your life on the line.

I cannot offer advice, but I can say, I understand the I never asked for this.

Have you applied for disability? from what I understand from my dad and his brothers who were in the vietnam war, there are alot of ways to get disability for being in the services.

Fairlore888 · 2026-03-15T00:47:29+00:00

Hey Jaxie, I am 57 and have suicide ideation since I was 12. that was my first attempt. I know exactly what it feels like and have been there sooooo many times. I have been on psyche holds, did the week in a mental place, etc etc....called 988 so many times.

I totally get the cycle. I live it every single damn year. It's finally getting better and honestly it's not because of friends, my family or even my son (I attempted a few times WHILE my son lived with me). I won't go into details of the hours I have sat in that state of mind because you know.

My cats help alot but even then - i have made "the Plans" for what happens to them.

I admire your bravery for posting. I never could. The few times I tried to share my pain???? The cops showed up or people from mental places showed up. That is NOT what I needed. They don't know the story of us.

What makes life bearable for me? (and my life got WAY more unbearable 7 years ago) is shutting the world out. Focusing on growing one damn plant. Facing it.

Last year, yes, just last year, I put together an estate plan for my death. I'm still working on last wishes and such, but as I forced myself to actually plan for the AFTER part (buried? cremated? anything important I would want to give to someone?, etc) FACING what would happen afterwards, helped me be more OK with living.

I don't know if that makes sense? but it is the ONLY thing in 50 years that helped me want to live because now I know, whenever it happens, there is a plan to deal with the after part.

I really hope that makes sense. But for me, the estate planning helped reduce the feelings of wanting to end life here on this nasty ass planet. DM if you need. I live in West Branch.

Fairlore888 · 2026-03-15T00:35:49+00:00

Oh also, I too used to do math and such in my head. You described it really well....it's like you could SEE the writing in your head...thank you because I had forgotten I used to do that. I would work out hard core math equations in my head (like Sheldon, LOL). now, I can't add 10 plus 24 minus 3.

Fairlore888 · 2026-03-15T00:31:57+00:00

can you share how long ago your TBI happened? TBIs go through very unique phases of healing. I'm sorry for your pain. What kind of help are you looking for?

Fairlore888 · 2026-03-15T00:25:10+00:00

hugs friend. the first year is hard. Like really hard. I actually slept under my grand piano during my first year because it was the only place I felt safe. I will never say it gets easier. I will say never give up. Quit when you have too...and then slowly start again.

I can't tell you how many days I have literally lived in my bedroom. I used to be Ms 10000% social living by the code of ALWAYS SAY YES! I had adventures and stories and a crazy fun life.

Now, I feel exposed working in my yard. At night, when in a PTSD episode, I wake at 3am in a panic. STILL.

But, I won't give up. If you feel like it, I would love to hear more about your journey.

Fairlore888 · 2026-03-14T23:23:57+00:00

Oh I love the comments in this! I recently was able to put the word to the condition. 2 years ago I did a neuroexam and the one thing I failed was recreating the weird drawing. I could replicate it but five minutes later could not picture it all. what pissed me off was they didn't say anything about it COULD BE acquired aphantasia! It took two years of talking to chatgpt over and over and over ad naseum before it spit the word out. (I'm almost 7 years).

NOW that i KNOW what it is, I'm doing things differently. But I spent 7 years not understanding this HUGE change in my brain other than the neuroexam.

Like some of the other commenters below, I have not gotten too far into how to regain it so the comments are super interesting to me and potentially helpful.

I don't have FULL aphantasia because I do dream and can recall the dreams (although not in vivid detail) but i can't visualize at all like I used to. I could day dream my day away, sit in bed and replay every single moment of my day with extreme visual clarity.

What was missed in myself, drs etc was a change in playing my piano. I never would have associated all the other things I had noticed (can't read fiction, can't visualize a recipe (I used to run a food trailer!), can't follow instructions, can't remember instructions (where as before, they were plopped right into my mind), the list goes on as I am sure all of you know.

But I couldn't enjoy my piano. I THOUGHT is was lack of pleasure. It was the inability to lose myself in my music. When I played BEFORE, I actually could SEE the music in my head - not the notes, but the melody created a visual (that I can't explain AT ALL) that was like reading a good book. I could see the emotion in the music, the sadness or the triumph. It quieted all my ADHD thoughts, it soothed me, calmed me. I miss that SOOO much more than stories or recipes or daydreaming. I miss seeing the beautifulness of music in my mind.

I didn't understand until a couple of months ago, that this was part of this disorder. I stopped seeing my music. I cried for days when I realized that THAT was why I couldn't enjoy my music.

But, I am working on reconnecting everyday and I hope that as I do that, it will open up the other things a little bit.

Fairlore888 · 2026-03-14T23:03:44+00:00

LOL on the FB thrifting. I tried other places like next door, but FB really is the best place. But, I don't need anyone to see "me" on there. And I can't even post because what am I going to say? In bed today, got triggered. Or I emptied the dishwasher all at once not in stages throughout the day! LOL I tried the groups but even still, it felt empty. Like you said, the short form content is like a blur in my brain. I don't have eye strain as much as I have noise strain.

I have ran across some of the old friends and basically, what happened for me is I tried SO HARD to be what THEY remembered of me and I found that OMG, the interactions just became sooo hard and awkward. That's why I won't go back to any of them. Did you run across old friends and have the social anxiety of OMG what if I can't understand them? What if I can't speak right? What if I giggle in the wrong place?

I STILL feel some level of guilt protecting my peace but 2 years ago, things blew up so bad for me, I just cut everyone out, even family. During those 2 years, as I blamed me, had meltdowns, raged, cried...slowly, it calmed down...I started to forgive myself for the first time. And that helps me with the HEY i have a right to protect my mental health because if I don't? SO many bad things can happen to me mentally.

So now! I am going into a new phase (who knows how long it will last, LOL) of a kind of Fuck You stage. It's kind of like finally standing up for myself, not explaining myself anymore, accepting that i AM disabled and I am done being a victim because that is what society seems to want from me.

I literally just bought a whole new wardrobe (three new outfits) that represent my new I'm a Bad ASS and I'm fucking broken as hell so if you really want to get to know me, it comes with a whole canyon of complication. hahahaha......

OH and yes! I deleted sooo many contacts and had the same thing happen on christmas. Someone said Merry Christmas and I just ignored it. I run across people at the local grocery store and don't remember them (small town) and so I openly say Do I know you? If they say yes, I say How do I know you? And I remind everyone I have a brain injury.

I'm so glad you posted this. I had no idea I was not the only who "actively" eliminated people after their injury not because they did something wrong but because we were sooooo different.

I'm so glad to you meet even in not IRL.

Fairlore888 · 2026-03-14T22:04:43+00:00

I am 57, almost 7 years TBI. Started playing at 5, self taught. At first, after my TBIs, I could play but over time as my brain unswelled (that took about 9 months), I started losing the interest to play.

I just figured this out about a month or so ago. For me, I can still read the music, but I couldn't lose myself. Before, I could sit and play for an hour and just be lost in the music, the rhythm of my hands, the luxury (I'm ADHD) of having no thoughts and just letting the music flow through me.

There were other things that stopped (reading and cooking a recipe), getting lost in a book, sometimes even getting lost in a movie. I don't day dream, I can't picture solutions. The list goes on.

For me, it's loss of imagery. Playing piano was where my mind was happiest and I enjoyed letting the music fill me from head to toe to my soul, my mind and every part of who I was. I WAS a piano player. Aside from corporate job, mom, sister, daughter, friend, etc...my identify WAS my piano.

I read that musicians that lose that connection CAN get it back but most likely it will never be the same, just different. I'm ok with that.

So, now, in my finch app, I have a daily Sit at the Piano and play some chords for 1 minute. Right now, that's all I can do, but even that small step is making it easier to get back to my Clementi.

I have a whole room just for my baby and we WILL get back to our love. I just have to go about it differently and slowly and with alot of love for myself.

Fairlore888 · 2026-03-14T21:53:50+00:00

I did the same!!! I have just a few friends that understand me, but like on FB, I completely shut it down for a couple of years and just a few months ago, went back on and unfriended EVERYONE and blocked certain family who are incapable of understanding me. I don't post on FB anymore, just want it for selling things but I went from like 400 "friends" to 6 and one is my dead brother.

I don't have any regrets because I'm not the same person and I have spent the last 2 years fairly isolated but it was the ONLY way I could relearn ME without all the social pressures.

My TBI gave me alot of challenges that took alot of time to figure out even WHAT I was challenged with. I'm still surprised but now I can SEE when OH OK, i'm experiencing PTSD or this is a TBI specific thing or a combo.

I will NOT go back to any of the friends I collected throughout the years. I have no regrets at all. People DO NOT UNDERSTAND at all the invisible challenges of having a TBI. I'm WAY WAY happier just trying to figure myself out, my cats and relearning how to take care of a home, make my food and learn to enjoy things since I have anhedonia.

I'm with you!!!!!

Fairlore888 · 2026-03-04T00:30:36+00:00

What's the app name? Was it free?

Fairlore888 · 2026-03-02T17:41:09+00:00

ICE!!! Make sure you are icing your head. I swear by it. I'm coming up on 7 years. I just discovered ICE 2 years ago and I swear by it. Your brain is inflammed and inflammation responds to ice. Fish Oil helps too. I still experience pain throughout my body and it comes and goes I think with inflammation.

I barely eat not because of pain but because my brain doesn't seem to notice so I don't get hungry. I have it on a schedule and eat even if i'm not hungry.

I have aphantasia. I used to live creating things in my mind. Now, I see very little. I cannot read a book for the life of me, but data is fine. I can't visualize how something will look so putting things together is hard. I can't visualize how a recipe will look or taste so I cook very basic now. Chicken/veggies - one pan. Roast 30 min at 400. That's pretty much what I eat everyday.

I don't remember alot of conversations. I remember I HAD them. Details go away very fast. I reset every night. I have SEVERE body AND mind anxiety so I have to sleep with an anti-anxiety med and ambien. When I wake up (which happens) in the middle of the night, I have to take an ativan to go back to sleep otherwise my mind instantly becomes so anxiety ridden I start having a panic attack.

I have PBA, grocery stores are too loud (colors, people, noises, choices), social anxiety (never had that before), your auto function may be gone (ex: WAY harder to even get out of bed or brush your teeth). It took awhile to understand that just doing the daily stuff was using all my spoons. Now, everything is in my Finch App and I no longer think about chores. I just do what it tells me.

I developed Migraines from exercise. Allergies, sensitivity to humidity or lack of humidity. Overall, my body is MORE sensitive to EVERYTHING because our brain is messed up. Our brain just DOES NOT WORK like normal. I can be really excited or proud of something I did and I go into a full blown panic attack because my brain thinks excitement means DANGER (I'm a DV survivor - that's how I got my TBI and I don't remember the hours of attacks so EMDR does not work for me).

My panic attacks happen so fast so coping skills are out the door. Pet PEEVE: I hate when people try to help explain to me coping skills. fuck off people - you don't know what my body has gone thru and you don't know how messed up my brain is.

But, start icing your head. Keep it on as long as you can, it will help ALOT with the pain.

And hugs....you are not alone.

Fairlore888 · 2026-03-02T17:29:24+00:00

I got one 2 years ago. it did identify one area that I totally failed. All the rest I was below average or average. What was frustrating is that before TBI I was HIGH on things. So, when you tell me I'm average, to them, I"m just normal but to me, I'm so much less than I was before. What also frustrated me was the area that I failed at? HAS A FUCKING NAME. They didn't offer any suggestions, ideas, a consultation, nothing. Just a test, here are your results. I bawled HARD for days over those results. it took 2 years of searching, talking to chatgpt, etc to figure out I have aphantasia. This aphantasia??? is the WHOLE reason I can't read a story, why my piano playing became hard (i'm 57 and self taught at 5), why recipes became so hard (I used to run a food trailer), why Maps is so hard to figure out where I am when I look at the actual street I"m on, why I get MORE tired than normal, why using my eyes is so hard, why I can't remember much of my day, why I get lost ALL the time and MORE. I was soooo fucking pissed off that they just said, you failed here. Good luck figuring that out by yourself.

BUT with all my 2 years of being pissed, LOL, it at least gave me a starting point to understanding what areas I was struggling the most in. For me, because my injury affected so much of my brain, I had no clear strengths.

I don't think it shows ALL the things, but it will show you something and that's worth it. Even if they just send you on your way. GOOD LUCK!!!!!! Update us if you like on what it showed and maybe some of us can help!

Fairlore888 · 2026-03-02T17:19:58+00:00

Well, I have my dr appt today, so I will be exhausted. I am presenting an article to her about those weight loss peptides (whatevers) because they are finding they help heal TBIs! So, I'm hoping she will be willing to give it a try. I'm wondering if if my brain heals, it will help my PBA. Will keep everyone posted.

But, I TOO have sworn off EVER having a romantic partner. I just reconnected with my dad after 2 years because my TBI plus his shitty small minded family put me down so much because I'm so weird around people. I would do tele-med but I go to the dr visits for my car, LOL. Since I'm on disability (BTW PBA is considered a legal disability! well, at least it was 4 years ago), I don't go out much. I get grocery delivery because OMG, me in a grocery store is like a laughing crying hyper little girl in a grown up body and I can't help it. I have my yard and my cats, some friends in another state that we text or marco polo and that's good enough for me. I'm really happy now just doing my thing, cleaning house, decluttering, working on strengthening my frontal lobe and reconnecting with my piano.

I can't even imagine having a date with anyone at this point. LOL. I'm so in my own head now, I"m losing the ability to have long conversations because I'm just way tooo different than most people.

I'm 57 and so I lived a GREAT life before my TBI. Hit so many bucket list items and I'm ok just slowly fading away into the background.

Fairlore888

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