No Pain No Gain: when to push and when to back off

Dr. She says she is not surprised that I don't remember the medication. She says considering all the stress I was under and the medication itself it is not surprising or even all that concerning that I don't remember it.
I do feel better about it after this conversation.
We also talk about pain.
Renée and I talked about pain yesterday. I am so glad for that conversation. Renée calls me her mirror  sister because there are so many ways we mirror each other. It is funny that she has problems communicating and finding words at times because often she helps me find and/or remember mine.
Part of this pain theme that was discussed with both parties is the need to feel pain and that pain is a form of communication. We need to listen to what the pain is telling us. Sometimes it is telling us that something is wrong. Sometimes we need to push through while others times pain is what lets us know that we need to back off. Sometimes allowing ourselves to feel the pain is how we purge our system of the trouble that pain is an indication of. The pain I am feeling from rejection by people I love and care about is kind of like this. Even though I care about them they do not care about me, which hurts a lot, but also lets me know that they are not really friends or healthy people to have in my life. They reinforce negative core beliefs I have had about myself and this needs to be purged. Renée has beautifully taught me this.

Right now my hands, especially my thumbs are a good illustrations of pain, how it communicates to us and how to handle it. I am doing physical therapy now and the guy I am going to is amazing. If he were a horse trainer he'd be considered a horse whisperer, so I sometimes refer to him as the Hand Whisperer.
He has been causing a lot of pain to my right hand, it is still painful a lot but it is at a point in its healing that the pain needs to be pushed. He does not want to mess with the left hand much because it is still very broken. That break you can see on the x-ray. The right hand injury is older but amazingly it also did not break any bones, just a ligament or two...or more. The pictures is what it looks like today. Hand Whisperer taped it to help retrain and to help encourage swelling to go down in some areas that are still swollen. I am seriously amazed and impressed that through the stretching, exercising and a technique called myofascial release I have had instantly increased hand strength and less overall pain. It is most fascinating because the exercises and myofascial release techniques are painful. He is a causing pain and discomfort to both decrease pain and discomfort and increase strength and the results are amazingly fast and obvious. I have only had two PT appointments with the Hand Whisperer and already I can open things again using my right thumb and index finger. I could not before within the same day.
He is working wonders.
However if he did not have proper diagnosis and was pushing my left thumb the way he is now pushing my right thumb it would not lead to positive results but could very likely cause significantly more damage. And if you notice, although it was bruised at first it looked about the same as it does in the picture I took of it today when they took that x-ray.

This is what broken thumb looks like today

And this reminds me a lot of other broken parts I have that have experienced significant pain lately. Proper diagnosis really is crucial. 

One Thing Broken Brains do Right is Fight

While going through our medicine cabinet I found a prescription for Abilify (generic version) written to me from June of last year.

I found this very troubling.

It's been about two weeks... and it is still quietly nagging somewhere in the back

Because I don't remember it. But I do remember that Dr. She mentioned that medication having not worked for me in the letter she wrote to the psychiatric PA when she realized I needed that help and fast. I remember telling her that I had never taken that medication, at that point I did not know why she included that in the letter, where she came up with that idea....

This is really bothering my head. 

Because obviously it had been prescribed but I don't remember that and I don't remember if I tried taking it at all. 

It had been prescribed by my family practitioner PA. The one the noted "possible mania" the day after my last appointment with Dr. He, just before we were leaving to Italy. 

So I asked for the medical record notes from the day it was prescribed... but even with that, I don't remember her prescribing it or the conversation about it. 

There are 27.5 out of 30 10mg tablets left in the bottle. Which means I took 2.5... But I do not remember taking it at all

And this really bothers me.

I was such a mess I don't remember it.

I vaguely remember the appointment. She was the only provider I had left that was at least trying to help. But I think at that point I also thought she was not the "right" doctor for what was going on with me... I was still, somehow, insanely trusting the things said by Dr. Concussion -especially that I need a psychiatrist and neuropsychologist. In my brain (and most other people) they, meaning those at the Neuroscience Institute, were still the more qualified and appropriate doctors. I am not sure if that is why I only took 2 and 1/2 or if I really responded badly after only taking 2.5 tabs... I can not even pretend to know because I can't find the memory... And I was working a new job, and that was going badly. 

This bothers me.

I already feel broken and beat down. 

And I have to keep reminding myself that I am not as worthless as I feel. I have to keep trying to find the good and the positive in spite of the beat downs, lack of support, lack of concern, lack of friends, lack of a job.... and reminders of how screwed up my head really is. 

Today I am not winning.

And I am trying to remember how to pull out of this... But also realizing that maybe I have never been that good at it because I keep loosing...

loosing friends, loosing family, loosing confidence, loosing jobs, loosing ability and loosing with the people who say they are there to help. 

the common thread 

is me

Yes, I see

no need to point it out. 

No need to reinforce

I already know.

...and yet I still try to be kind and I still try to help and love others... even those who don't love me.

And I know that I am far better off than so many people in this messed up world...

But so many people, too many I know, are better off without me...

and I am tired of "getting it" 

maybe I am mad

maybe I am sad

or maybe I am bad

for not being what they all really want me to be

Gone

...

and I want to end there. I did. but my resilient and defiant broken little brain just yelled at them, "shut the fuck up you jack ass mother fuckers." 

Sorry, no edits this time. My brain is fighting for me and I am going to let it win even if it is ugly and unacceptable, even if it is angry, even if it isn't what everyone else wants me to be -even if it's not what I want me to be, look or sound like...

Because at least my brokenness is still fighting for me. 

Dear Doctors, TBI? DO AN MRI!!

So there are many things that many people don't seem to understand about my situation, including and most damaging, the medical providers. Here is the main thing:
I am still trying to piece together what really happened to me. What really happened to my brain and when.
Some people seem to think the "what really happened and when" doesn't or shouldn't matter. They think I need to look at it as "this is the brain injury you have, so now you deal with it."
Well, I am trying to. You would think that much would be obvious.
But even so, I sometimes feel very angry that they expect me to just accept that "we don't know" because the reality of the "we don't know" is that WE COULD HAVE KNOWN. We could have known exactly what the damage was from if they had done an MRI immediately after the car accident. We could have possibly known if the next two doctors I saw about it had ordered an MRI. And AND this is really kind of a big deal, WE SHOULD HAVE KNOWN right away because the fact that I have permanent scaring suggests I was at very high risk for complications that were not being monitored.  Dr. Reddy (Concussion Dr. at the Neuroscience Institute) was wrong to not order an MRI herself even though it had been 4 months since the car accident before I could get to her, but she was right about one thing: I should not have been working (which led to my being fired from that job in a very unfair and traumatic way).
And honestly this is as far as I go tonight... I am tired of trying to figure it out and what to do about it and yet it seems so very important to figure out.
Soooo many things could have been prevented if that first doctor at the North Ogden IHC Instacare would have ordered an MRI... Actually, maybe first fail was with the ENT ambulance drivers that gave me the option to go in the ambulance or not. Don't expect a person who was clearly hit in the head, is overly emotional, confused, and is struggling to make a decisions, to make the decision about whether or not they should be taken to the hospital to have their head checked out.
And if you or anyone you know is ever in this predicament, please get your head checked out!

Turning points and tough decisions.

the chemical ups have definitely subsided. I am much more stable...
but I feel as though I am loosing some of that stability again because anger is exploding from me a bit...
I AM ANGRY
And not just about me and my shit but about the shit that too many people handle and how we are all so damn shitty at helping each other....
I AM MAD
I am mad that I am so powerless to do anything about the inaccuracies, false accusations and even straight up defamation in my medical records.
I am mad about how my kids have been effected. I am mad that my son is alone and lonely, that this experience has resulted in him feeling and becoming somewhat isolated. How the hell does a 13-14 year old boy explain to anyone the anxiety he is having because the medical institution that his mom loved and trusted had the cops sent to his house and he was led to believe his mom had committed suicide after he had an altercation with her.
It's too much for a 13 year old boy to watch his mom go manic and then fade into a depression that was so mind altering that she was not the same person she used to be, but rather a screwed up version of his mom that is in a love with another man that happened to be the medical provider that had broken her and she is trying to protect him when he is lying about her condition to those that could help her, she is unstable but trying her best to not be, and she is so suicidal from it that it was impossible to hide although she was trying her best to and to not be that also.
That is too damn much for any child
and I am sad and angry that he has had to go through that. I am sad and angry that I don't know how to handle it or how to help him now. I am angry that I know space from me is probably a good thing for him. I am sad and angry about that because I love him, he is still my young son, and he is so important to me. I am sad and angry because so many things have been canceled that finding any good opportunities with peers his age this summer is very difficult and, so far, also very far away. He wants to go. He deserves to go. ...It is expensive... but more than that, I will miss him and I will worry about him... And I want to keep him. I want to make things better... that I cannot make better... no matter how hard I try. I can not fix the way things have happened or his pain.... I cannot even seem to be able to fix my own problems. And he is loosing faith in humanity at far too young an age because of it.
...So I need to let him go, I think, and this is hurting me more than I care to admit to myself...
I am tired of handling this. I am angry that my kids having to handle this. They already had the burden of handling my broken and exhausted brain... I am tired of doctors that are supposed to help me untangle what was made a mess by other doctors. Other doctors that have done what they can to cover up the mess and make it appear like I was the one making all the mistakes and tangling things up...
I am sad about the strains my breaking and this mess has caused my relationships. Relationships that have also impacted my children. I am not the only one who has lost friends through this. I am sad about how big of a mess I was. I am sad but also still know, that then, I really was doing the best that I could. It was the first time in my life that I knew I was doing the best I could. I am not sure that I am anymore. I am stable but I am a coward and I am confused on how keep proceeding and especially on how to help my kids that have also been affected by this.
...I will miss my son terribly... I want to keep him here and plan our own adventures and work on the projects that got lost and abandoned amidst this chaos. I want to teach him and love him... But that may not be what he needs right now since he wants to rebel against me, angry about the situation,  but also wants to love me and protect me and fears how his actions affect me while feeling resentment that they do. So sometimes he pushes buttons and then feels terrible about it. He is a good kid and I know deep down he wants to be the good that he is, but he needs a break from me and my brokenness... Which is very sad... and I am sad... and this is not really what I thought I needed to process, but I see now that I do in a big way.
... Yet, while it is sad,
you know what,
at least we are all big enough to admit it, face it, and do something about it, in a way that is moving forward with thoughtful regard and consideration for all parties. And ultimately I hope he knows just how much I love him and how much I appreciate his being there for me and trying to do what he could when I was fighting for my life. I appreciate how strong he is and has been and how clever and talented he is. I appreciate how capable he is and that he loves and cares for others even when it is hard. And, even though I had asked him not to, and they did use it against me (and him) the way I feared they would, I am so incredibly proud of my son for having the guts to call the institution and at least try to talk to the man he knew was responsible for the breaking his mother.
I am one lucky mom.

Pain in the Ass. You want something to beat me up over? I'll give you something to beat me up over

I've had an upswing in reads on this blog. That is nice to see. And I really have to take that little victory today because I am so tired of taking hits in my realtime world.

Dr. Tangled, that was a kind of jerk at my follow up appointment with her, requested my husband schedule an appointment when he called asking for clarification. He scheduled it thinking she wanted to help correct whatever went wrong with that appointment. But it seems she actually wanted us to come back just so she could exert her dominance, accuse me of doing so many things wrong while at the sometime blaming the TBI but making sure I knew just how crappy she thinks I deserve to be treated. We did not feel we should have to pay for that appointment. But this morning her office manager called to let me know they will be charging for that appointment. Now remember my husband is the one who called them. I sent an brief email, but he called. He is stable and perceived as such while Dr. Tangled accused me of being anxious all of the time and other things, yet they chose to call me and not my husband. 

And I am so tired of feeling like it is all my fault, I am the problem, and always to blame entirely for these omnipotent providers acting like jerks.

I think some of this may be reflective of bigger cultural problems.
But I really don't want to go into that too deep right now.
Even before this phone call (and the one that followed from the next person up the line that went about the same)  I had a hard time getting out of bed because it kind of feels pointless sometimes, so this hit is at a bad time. And her office director, as nice as she seemed, had to make sure I know that Dr. Tangled does not get complaints like this. Of course she doesn't, TBI patients rarely file complaints, they usually just absorb it, feeling like they deserve it. But more than that it, I find it highly likely she is being influenced by the defamation and slandering of me in the medical records that follow me... So of course I deserve to be treated like trash, that is what I have been diagnosed as by the Neuroscience Institution that is of more significance than her practice is.

... People are so lemming like and predictable. They repeat the same stupid patterns at every level. The same patterns are being seen on larger scales with all the insanity that is happening in the world right now. The corporations and big names are jumping quickly onto bandwagons to show how much they care when in reality they are doing nothing to help and often further perpetuating harm by jumping on bandwagons that are condemning too many people who are not bad.
Like Black Lives Matter. Of course they do, but how does Amazon stating that on their website help anyone? And how are protestors glaring, shaking their signs aggressively and yelling at us in our car as they march past helping with that? I am not on opposite sides as what they proclaim to be protesting yet they were definitely making sure I felt their wrath with me. But for what?
I am tired of people so aggressively defending their misjudgments of me. Just because you want to think I am something or one way does not make me that way.
Although this type of treatment of people does often result in, or makes it appear to result in the person turning into exactly what they are being accused of. I think the movie Zootopia  covers this topic very well. People often finally give up and give in with an "if I can't beat them I might as well join them" style attitude and I see very clearly why. It is so hard to continue trying to prove that you are not what you have been wrongly labeled or accused of being especially if you know their is some accuracy and especially if the people accusing are in positions of power over you. I have mentioned this before, this happens all of the time to school children in school systems. It happens with race, it happens with poverty, it happens in families, it happens ALL THE TIME to girls and women who are sexually abused and/or exploited,  and it also happens ALL THE TIME to people with "mental illness."
The most vulnerable among us are far too often blamed more than they are helped. This experience has taught me a lot about victim shaming and my eyes have been opened to just how huge of a problem it is. So victims turn into abusers themselves. Or they continue on the path that was set for them because they cannot escape the labels and misjudgments.
I don't want to be that person. I don't want to become what they want to make me out to be. I don't want to be what I have been misunderstood and misjudged to be. But I also refuse to lie down and take it anymore.
So now what?
Celebrate my small victories, keep standing up for myself and speaking out, and (as Dr. She would say) fight harder.
Yes ma'am.
Will do.
And tomorrow I will not have a hard time getting out of bed because I obviously have a job or two to do.
I WILL NOT burn out. I WILL NOT continue to allow people to treat me poorly. I WILL stand up for myself. I WILL keep speaking up and speaking out and I WILL warn others every chance I get until changes happen that also protect and help me and until I know I have done everything I can to protect every person possible from similar mistreatment.
The man up the line from Dr. Tangled's office director said they will be billing insurance but then call after we get a bill to see what we can figure out. I can tell you this, especially considering that they are still billing insurance, that if they seriously expect us to pay after the way things went then it is very unlikely that Dr. Tangled really does not get complaints like this. If I really am the only person who she has had a problem with, than waiving that bill to be rid of me is the most likely response. However, if they want to fight with a peon like me and accuse me of being the entire problem, then we all know it's not very likely that the claim that this doctor "never gets complaints like this" is true. Or she is afraid that if she lets one person "win" she will have to let all of them "win" which is usually only a fear to those who have wronged many.
...Maybe I am going to turn into the pain in the ass I have been accused of being. Maybe I need to let people see just how big of a pain in the ass I have NOT been...
I don't know but I do know I do not deserve to be treated the way that woman treated me and also be expected to pay for it.

Intertwined Rewind

"Have you ever been evaluated by a psychiatrist?" It is the question I am being asked as part of the pre-paperwork for my neuropsychological evaluation that will be done tomorrow. I think back... Have I?
Oh yes, at age 18 when I spent the night in the place in Florida... oh, and I have one other time by the doctor of the study I did to get help with what I was experiencing in a way that would keep it hidden from records. I went this route because by then I knew too well how that stuff will follow and haunt you. How opportunities will disappear and judgements will become quick, severe, and unjust.  So I knew it was best to keep it as hidden as I could and going through a study would do just that. Good thing that study doctor liked me well enough to help me stay hidden for years -until I really no longer needed a psychiatrist. Do I share that now? Of course, because I was evaluated by a psychiatrist, I do remember that now, and I am no longer interested in hiding and/or burying that part of me because that has led to some trouble...
But when? The paperwork I am filling out asks for when...
I really cannot recall. I know an approximate within 5 years but thats a big spread. Then I remember this here blog and I think maybe I can find a more exact time frame...
So I find myself reading the very old stuff. A lot is the same. A lot is different. I am surprised at how the pattern of hypo-manic cycling is so similar to the manic crazy I went through- just not nearly to that same level. I am reading and remembering
...and then I am crying as I see pieces of me that were so clearly reflected back at me by that man that broke me...
I was even "okay with being wrong."
And now I am fighting words that curse God because this mess is so painful and so very confusing.
I don't want to fight that man. I don't want to be at odds with the reflections of me in the expert in the field of my life's defining trial.
It is too much.
And I hate that I have to remind myself, tell myself, or convince myself that it is not real, that he is not real. I hate that I have to keep fighting that in my head in order to escape whatever that was that I am not allowed to be a part of. I hate that I have to hate.
My story is his story in so many ways and his story saturated mine. I hate that he denies and hides   after twisting things just so to make me believe that he cared and cares more than he does.
Please oh please stop professing your love by having nothing to do with me outside of therapy.  
We both know it's not true so please let me off your hook, please help me break the cycle you started.
It really can be just that simple.
I don't need to keep getting burned in so many ways by the medical records that can't sort themselves out just so I can burn out for you.
Please

...and I don't know who it is reading this blog but I am certain it is NOT him... yet sometimes I still hope. Hope that he'll care, listen, soften his heart and his ego, let go of his fear and hear me.

Tangled too Much today

Right now it feels like too much to untangle. I have an appointment with Dr. Untangle Neurologist tomorrow. She requested this appointment when my husband called to see if he could get some clarification from her. The fact that my husband did this at all is huge, and yet I don't really know if I can trust it at this point... so that is tangled. I feel nervous and worried about this appointment. I think I know at least some of what I need to get from it but I have no idea what to expect and I feel she has picked up some of the bias that was planted against me from the records she "poured over." So this feels tangled and ...scarey?
I have an appointment today to have my hip looked at by the right specialist... Why did the other guys waste my time and take my money if they weren't even the "right" specialists? And last guy said the tear in my hip labrum is not likely from the car accident, yet it never bothered me before that and has been an increasing chronic problem ever since. I asked if it could have been a smaller tear made worse by the car accident. He said that is very possible and to me it seems clear that it is the case because it NEVER bothered me before, but will the insurance company accept that?  ...So this is tangled also.
On Wednesday I am doing a new neuropsychological evaluation with Dr. She. I am nervous about this. Part of why I am nervous is because the testing the Cognitive/Speech therapist did with me last week triggered memories of Dr. He which proved to be quite painful. It seems so silly and it caught me so off guard because obviously he is still on my mind a great deal more than I would like (any at all is too much) so I would not think new painful feelings would arise, but they did, and the worst kind of all; the endearing ones. So that is tangled.
It is also tangled because I am sensing things from Dr. She that I am not certain of but that make me nervous. I am sensing those feelings that may just be her own insecurity but that feel like the feelings I feel when someone is becoming to afraid of or displeased with me and so they are thinking of dropping me... I know, or believe, that Dr. She is not going to drop me unexpectedly, she has promised she would not, but I am sensing things that make me nervous. Things that I might be understanding better than she cares for me to so if I bring them up I risk loosing her but bringing them up just might help me figure out what I am doing to loose people when I sense these things. ... I don't know.
Also I am feeling lonely.
I want friends again. I want to do things, but I have lost some friends in very painful ways and I feel very insecure and uncertain about this.
And I want to pursue those things I have set out to do, but it feels scary and pointless because I have failed so many times.
And I don't want to fight I want to resolve. I don't actually want to be on opposite sides as the Neuroscience Institute, I want to help them help me and others, but they see me as the enemy when I am not, which makes it so I have to fight when I don't want to...
"I am always surprised at how many people want to see you fail," says my amazing cousin that has been through more than anyone should ever have to endure but has risen above and created a name and a business for herself. She is so kind and she credits others in her journey constantly. She is beautiful but humble and one hell of a boxer, yet deep down inside I know she never quite made her Olympic goal because she is too caring and considerate, kind and compassionate, so even though she is one amazing fighter, she's not about hurting others and I think she'll never punch hard enough to take away their dreams. She is younger than me so I always think of her as "girl" but she is a strong and amazing woman who I admire greatly and look up to so very much, so it kind of blew my mind that she has felt that too, that others want to see her fail and how they have treated her or things they have said to discredit or subtly undermine her efforts.
When I feels these things it often breaks me. I find it hard to even try. Sometimes it really feels like there is no longer a point to anything I do...
Yet I know this is not entirely true and I keep trying, I keep fighting...
But lately, I feel like I am fading again. Only this time I am more slowly fading into the blah of low confidence and complacency. Last time I was fading because I was not well and very broken. Last time I at least knew I was doing all that I could do. When I was fading before and told the people who were causing or heavily contributing to that fading, I at least knew, first time in my life, that I was really doing all that I could do and the best I could do. I was not beating myself up for not doing enough because I really was working hard and doing all that I could do as I was fading into the insanities and brokenness that I was. My fight was to survive... And now I want to thrive so
this time I am fading because I feel beat down and defeated. I know I can do more but I don't know that their is any point in trying since my efforts are wrought with resistance or just plain ignored. I don't feel like trying because maybe they are right about me and maybe the reality in the middle is that I have nothing of value to offer and I am not worth anyones time.
...
...
...
...
...
...
...
I want to believe in the ideal
I want to believe in me
I want to shoot for the stars and maybe hit the moon...
But maybe I shot for the stars and hit them
and now I am all burned up
because I was never a star myself
Just insignificant matter that will burn up completely and quickly in the event that I get too close to the stars I am shooting for or past.
....
.....
.......
.....
....
...and now it is time to turn it around again. Get all positive and motivated. Believe in myself or at least a higher power that I can allow to work through me
...which is very easy to tangle in our mortal frames,
so... go there or don't?
"keep fighting"
and
"fight harder"
but I don't want to be a fighter, I want to be a lover.
So...
Keep trying.
Forgive myself
and keep trying.
It is okay to be wrong. It is okay to make mistakes.
But it is not okay to be okay with being wrong and making mistakes about others that are harmful to them and then perpetuating harm instead of admitting you were wrong or that you made a mistake. It is not okay to lead others to believe that which you are wrong about simply to hide and protect yourself from the mistakes you made. It is not okay to blame and shame the other person for your wrong and your mistakes. That is really not okay and not good citizenship. It is especially wrong when you are in a position of power over the other person.
Hmmm... my bad parenting of the other day is starting to make more sense. I bess be careful that I don't become the fingers I am pointing and the frustrations I am fighting.
Psychology- so complex and yet so repetitively simple.