Burning Out just for you J P

If I am being perfectly honest, lately I find myself being a touch jealous of my younger cousin that dropped dead in the middle of the night.

And then I feel torn between living harder or trying to find that homeostatic balance that will keep me around for longer. 

My mom used to tease me that I was like, "Look at me. No don't look at me." and that is kind of an accurate description of how I am. I want to speak out but I don't want it to be the Look at Me show and I don't really want the attention or maybe it is the expectations I don't want. Also when I have problematic symptoms I mention them so subtle at first, but if continues I bring it up more plainly but then I instantly hide and shy away from addressing them.

I want to be done, I want to quit and yet I mostly don't. But even in those times when I really want to quit I still keep fighting.

Like today. I needed to get a new blood test done. Turns out my concern about the initial blood draw being done later than it should have been done was valid. The doctor said that my cortisol was a little low but he felt that it was likely fine since I had done the draw later than I was supposed to. The lab tech thought it would be fine so I went along with it but it did not sit well so I decided to go back and have blood drawn again at the correct time. Dr. Endocrine did not have the results back form the second draw by the time I had my follow up appointment with him. He told me he thought it would show normal since everything else had and cortisol drops throughout the day, but he would get back to me if there was any discrepancy with sthe second draw. I questioned a lot about it. And depending on whether you are one who is hopping for my thriving survival or you are one who feels the way the Intermountain Neuroscience Institute feels and would rather I die, that was a good or bad thing because as it turns out, the second draw showed cortisol as definitely low. 

This does not surprise me. I was in fight or flight crazy manic/bipolar cycling for so long and the trauma that the Intermountain Neuroscience Institute was causing and/or exacerbating was so insane that nobodies endocrine system can keep functioning properly. 

They literally were burning me out.

So now a new blood test has to be done and we need to find out if and what mechanism is failing, or something like that. 

But, going back to the honesty I started with, I find myself wondering if I really should even worry about it. I can just let myself go. But it does sound like a very slow and boring death... and I suppose, maybe what keeps bringing my fight back is that if I am going to be alive I want a decent quality of life. I don't want to fight just to survive, I want to thrive if I have to be alive.

And now I will loop again back to my systems that seem to be breaking down from all of this trauma

Seizures

the EEG showed evidence and I had been a touch suspicious before that. However I did not want to admit or face that entirely so I do what I didn't know that I do so well and have downplayed and hiden that mostly. I especially am fearful of facing the possibility of seizures because the mood stabilizer I am on, quetiapine, "can reduce seizure threshold" and I genuinely fear messing with the medication that has been so very helpful and that has brought more stability and sanity back. 

But the other night, actually 4:30am, I was awakened by a convulsion that was so strong it hurt my back and the images inside my head shaking severely as if my brain were shot circuiting or an actual clip from certain 90's rock music videos. This time I could not deny it nor pretend that maybe it was not a seizure. I did a little reading online and it all seems to confirm that. I found that seizures can be referred to as electrical storms and I found myself thinking, "Yep, that is a good description." 

But now what?

I had an appointment with psychiatric PA and she is concerned about the seizures so she once again sent the referral to the University Hospital neurologist. She really wants me to have a neurologist to coordinate with and overseeing treatment. She will consult with Dr. Odd for now but we both (and my children who have meet him especially) agree that he is not the best fit for me since he clearly does not like to handle TBI related stuff. 

However, the neurologist providers she is associated with called today to let me know they got the referral and to check my insurance, only to find that they don't take my insurance. SIGH...

Guess who does, and who they have actually suggested I go to instead the last time they called about the referral... 

So am stuck in this crazy loop unable to get to the neurologists I need. 

and half the time I'm like, who gives a shit (because really, who does) I am tired of fighting and trying anyway, while the other half the time I'm like "I want to live!" and seizures get in the way.

It's almost as if I am in a "give me liberty or give me death" kind of position.

whatever.

And life is so much more complex than even this. 

But I'll save that for another day.

Although I would like to share a theory I have about the quetaipine and the seizure activity. 

Maybe it is not getting rid of mania but rather reformatting it. Since that manic energy is no longer coming out, but maybe it still needs to, so it now comes out in an angry electrifying seizure burst. 

Maybe Quetiapine just reformats the mania into seizures. 

And then it turns into a game of "would you rather"

But the most annoying and disturbing part is that if the damn Intermountain Neuroscience Institute would have listened to me and treated me appropriately when I was manic and trying to figure that out while trying to protect the neuropsychologist that broke me, it is highly likely my brain would not be responding in this way. 

The stress and trauma is resulting in my brain literally shutting down.

Thanks * (names removed)* and the he-who-shall-not-be-named coward of a medical director. Thank you so much! you are so kind and caring. 

And even better, they decided to sick a lawyer on me threatening to and criminalize me and sue me for seeking clarification, understanding, resolution, and even medical care. 

It's disgusting. 

And I will not be silenced**. 

Give me Justice or Give me death! 

(because death is happening anyway)

* names removed because they can and have lied and they will use it against me, that much I know is real.
**Actually I am being silenced. They are they hold the power the money and the all of the cards and they have made false allegations and set things up so they could criminalize and penalize me for speaking up, speaking up and standing up for myself. It is very disgusting and disturbing.