Going Down the Rabbit-Hole

So happy to hear about the hopeful results.

errrrmerrrrgerrrrrrsh.

so the lab value displayed differently on the patient portal than the doctors portal. mine said 1.0 which is a positive result. her says <1.0 which is negative. so I write the lab to get exact value.

nurse finally draw more blood for other labs. almost getting good diagnosis make me excited and I try for help my doctor diagnose me. going to write down all symptoms for her this weekend. give her more clues because she is smart and not give up on me.

thank you for being my friends and not forget about me though I get sick very bad for very long time. I want be better soon.

lil b

Hello lil B!

To help you write the symptoms down, there is the advice given on https://www.pictalhealth.com/ which helped us solve a years-long (almost life-long) health question! People have diagnosed us with a fudgeton of different things and quickly stopped caring about it, until we made a full drawing of the issue: what it makes on the body, timeline with intensity of that it does + other things that might or might not be in relation to it, a table with what helps what does not and what makes things worse, and a mindmap of all our issues and how they relate to each-other (or not). And the doc, who was thinking about something else AGAIN before seeing our drawings, suddently he just had an eurêka moment and bingo, that was it! Seeing it all neatly was just what was needed to solve the issue!

Hope this advice will help! Good luck lil b!

~Theia~

TAFKAR:

I AM SO SORRY (not sorry) THAT MY ALMOST DYING HAS INCONVENIENCED YOU. I HAVE LEFT YOU ON FAR TOO LONG A LEASH IF YOU THINK YOU CAN B##CH ME OUT BECAUSE YOU FINALLY HAVE TO STEP UP TO THE PLATE AND BE A PARENT, REALITY CALLED AND THEY WONDERED WHEN YOU WERE PLANNING TO CHECK IN.

THIS IS YOUR D#### FAULT. DO NOT BLAME ME.

AND ALSO.....KISS. MY. F######. A##. MOTH####NG PIECE OF S###WEASEL F### FACE.

BEING A PARENT IS F###### INCONVENIENT. YOU WILL DEAL WITH IT AND SHUT YOUR F###### MOUTH ABOUT IT.

A###OLE.

I hope you’re ok from the “almost dying,” whatever that was!

Hey Bees,

We hope things are ok for you.

Viola

today they feel a whole lot not okay. my impulse control is poor. when I get angry I want to break things. my daughter is testing my patience, naturally at the age to push boundaries.

I sometimes think genuinely suicidal thoughts. which scare the $#%^ out of me. and I cannot take antidepressants because of an adverse reaction. I have had every test under the sun and all anyone can give me is a probable CTE diagnosis and I am left to face dementia alone.

kids dad is a hillbilly piece of weasel $#%^.

going to work is unsustainable. I have tremendous financial woes.

I'm super bummed about selling my car.

and I'm so tired of everybody acting like I am so gigantic ######6 inconveneience.

you guys know how prideful and independent I am. and I have kept my chin up, a smile on my face and concealed my struggles from all.

but you know what? i also find my disability inconvenient. very inconvenient.

and honestly i just wanna die. but i cant leave my daughter.

I've had enough pain amd suffering. i dont want to suffer anymore. and i know it's probably feeling overwhelmed from toi much stress that i feel i am at a breaking point.

the increased suicidal ideation coupled with diminishing impulse control is bad news. how will I keep working? how will I still be a good mom? how long before I hit the next stage of dementia? how will I ensure my daughters future? how will I live long enough to raise her?

and arent I just ######6 her up by being so ###$ up..... guys I know I'm strong. but even the strongest piece of steel will break from too heavy a burden. and I dont k kw if I can handle one more milligram of $#%^.

I'm sorry to have a pity party. this year has been too much for my soul to carry. and my body and mind are both broken.

on top of all of this i am losing my voice. literally. my throat muscles won't swallow. or clear mucus well. and my voice is diasappearing and unreliable.

I am so tire of being this useless disabled sack of $#%^. I'm just a burden to everyone.

I wish I had just died as a child and never ever ever lives through all this $#%^. never existed. to have come so far only to fail. is too bitter to bear.

my daughter is only 11. she has me for a mom amd TAFKAR for a dad. what have I done? it was selfish of me to have her. I should have terminated the pregnancy and killed myself. why did I wver try? why did I ever have hope? why did I think I deserved a happy ending?

I am the world's biggest fool. and this disability is my punishment. for having dreams above my station. I should have died in the gutter in the 90s like I was supposed to.

Nah. You know that saying? What doesn't kill you makes you stronger.

You will get through this and you will be (you already are) a kick ass great mom. Hang in there!

And you are such a fool that you are going to stand up, put your ducks in a row, and show that donkeyhole of Tafkar who is the boss!

THE BOSS IS YOU! YOU IS THE BOSS! YOU SHOW HIS DONKEY FACE! LIFE GIVES YOU LEMONS? YOU TAKE THE LEMONS AND THROW THEM BACK INTO LIFE'S FACE! YOU ARE THE BOSS OF LIFE! YOU SHOW THEM!

YOU ARE GOING TO KEEP ON LIVING, JUST TO SHOW THEM HOW PETTY AND ANGRY AND FIERCE YOU CAN BE! YOU ARE THE BOSS!

~Theia~

Hi Becca. You are not punished, it's not wrong to have hope and dreams. We know how it feels to feel like that. We always think there could be someone who cares about us, we believe it over and over again and we will end up more traumatized every time, feeling worthless. Regretting we had hope because some things are not for us. We are there too now. Some of us keep up the happy face, because that's what they do, that's the way we are accepted. But it was not wrong to have that hope, even when you don't know how to ever make it to be true. It's not wrong to be disappointed, sad, overwhelmed, bitter or jealous either. Feelings are what make us alive.

I don't think you need to be angry. It's OK to be tired and sad. You've earned that, and you've earned to have people who feel for you then. You're used to being a fighter, but are much more than just that. It does not mean you have to die if you stop fighting and feel bad instead. I think that is traumatic thinking, to feel you need to die if you don't fight. There's life without being angry too. There's strength beyond angry.

You gave life to your girl and she brings beauty into this ugly world. There was nothing selfish in it. Now her mom is very sick. She must be scared to death. Do understand acting out is the way she shows she feels bad inside. You may have dementia around the corner, but now you still know who she is. Your life is now, just like it is to all of us. There will be time when non of us are here anymore, and no one remembers we ever were. That's the beauty and the cruelty of life.

Sometimes you find comfort in knowing life will not continue forever. It's OK to feel that too. It's OK to get angry and start fighting again, but you don't have to just because that's what other people are used to. It's OK to be exhausted as well. You've had a rough life, it has not been fair.

In case you don't dare to hope anything good for yourselves, we do it for you.

Leon sends flowers to little bees inside to buzz around, onward and upwards and backwards.

You're not death yet.