IM DONE!

I HAVE HAD IT WITH MY DOCTOR, WITH MY CASE MANAGER, WITH THE WHOLE DAMN CLINIC!  I REFUSE TO GO THERE ANYMORE, EVEN THOUGH IT IS THE ONLY CLINIC I AM ALLOWED TO GO TO.  

HERE IN AZ, IF YOU ARE ON MEDICAID, AND YOU ARE DETERMINED TO BE ‘SMI’ (SERIOUSLY MENTALLY ILL)  YOU ARE ONLY ALLOWED TO GO TO ONE OF FIVE CLINICS FOR ‘SMI’S.  YOU ARE ASSIGNED TO THE ONE CLOSEST TO YOU, AND CANNOT JUST SWITCH.  ALSO, THEY ARE ALL RUN BY THE SAME AGENCY THAT CONTRACTS FOR MENTAL HEALTHCARE FOR MEDICAID FOR THE STATE.  SO THEY ARE ALL THE SAME.

SO I HAVE NO OTHER OPTIONS FOR WHERE TO RECEIVE MENTAL HEALTH CARE.  I CANNOT GO TO A ‘GENERAL POPULATION’ MENTAL HEALTH CLINIC, BECAUSE I AM ‘SMI’.  I CANNOT GO TO A DOCTOR WHO IS IN MY MEDICARE PROVIDER LIST, BECAUSE THEY DON’T ACCEPT MEDICAID PAYMENTS.  SO I WOULD HAVE TO PAY THE MONTHLY PREMIUM MYSELF FOR MEDICARE PART B, AND I WOULD HAVE TO MEET THE DEDUCTIBLE FOR PART B AS WELL BEFORE MEDICARE WOULD PAY ITS 50% FOR MENTAL HEALTH CARE.  IF I USE A PROVIDER FROM AN SMI CLINIC, THEN MY MEDICAID IS ACCEPTED, AND THE TOTAL BILL IS PAID.  ALSO, IF I GO TO AN SMI CLINIC, MEDICAID WILL PAY MY PART B DEDUCTIBLES AND PREMIUMS AND COPAYS.

SO I HAVE NO OTHER CHOICE THAN TO STOP SEEING A PSYCHIATRIST, SINCE I REFUSE TO KEEP BEING TREATED LIKE CRAP AND NOT HAVING MY NEEDS MET AT THE SMI CLINIC THAT IS THE ONLY ONE I AM ALLOWED TO USE.

SINCE I AM NO LONGER GOING TO GO THERE, I CAN NOT GET MEDS ANYMORE.  SINCE I AM NOT GOING THERE, I CANNOT GET TEGRETOL LABS DONE SO MY NEPHROLIGIST DOES NOT KNOW HOW MUCH TO ADJUST MY MEDS FOR THE ACIDOSIS AND EDEMA I HAVE THAT WAS CAUSED BY THE LITHIUM AND WORSENED BY THE SWITCH OFF OF IT TO FIRST DEPOKATE AND NOW TEGRETOL.  SO HE CANNOT HELP ME IF I CANT GET PSYCHIATRIC LABS DONE.

OF COURSE, THIS ALSO MEANS THAT I CANNOT FINISH MY PHP PROGRAM (PARTIAL HOSPITALIZATION), BECAUSE IN ORDER TO BE IN IT, YOU MUST HAVE AN OUTPATIENT PRESCRIBING PROVIDER.  AND SINCE I NO LONGER DO, WELL, THAT AVENUE IS NOW CLOSED TOO.

SO I AM NO LONGER SEEING ANY DOCS OR GETTING ANY MEDS OR PARTICIPATING IN THE PHP PROGRAM.  I AM GOING IT ALONE, SINCE I AM THE ONLY PERSON I CAN COUNT ON TO BE ON MY SIDE. IT IS TRUE WHAT THEY SAY–ALWAYS LOOK OUT FOR NUMBER ONE, CAUSE NO ONE ELSE WILL.

I WILL DO ALL THE THINGS I KNOW TO DO TO TRY TO STAY STABLE, AND IF I CANT, WELL, I CAN ACCEPT THAT I WILL HAVE MANIC AND DEPRESSED AND MIXED EPISODES AND THAT I WILL JUST HAVE TO TOUGH MY WAY THROUGH THEM OR GIVE IN.  AT LEAST I WILL NOT HAVE ANY EXPECTATIONS OF THE DOCTORS OR BE DEPENDENT ON THEM FOR THINGS THAT THEY FAIL TO DO, FOR FAILING TO LISTEN TO ME AND MY SYMPTOMS.  I WILL TAKE CARE OF ME FROM NOW ON, WITH EPISODES OR NOT, AND DO THE BEST I CAN.

OF COURSE, I FORGOT TO MENTION THAT THE SMI CLINICS HAVE THE RIGHT TO PETITION AND COURT ORDER ANY PATIENT WHO REFUSES TREATMENT AND REFUSES TO TAKE MEDS OR KEEP APPOINTMENTS.  IN OTHER WORDS, BECAUSE YOU ARE SMI, THEY HAVE THE RIGHT TO SAY THAT YOU DONT HAVE THE RIGHT TO REFUSE TREATMENT AND THEY CAN COMMIT YOU.  I SAY, BRING IT ON, BITCHES!  

Better, I Guess…

Ok, so I had my Emergency Clinic Appointment, the one to try to help me get more stable after the first 2 weeks of being on Depakote from Lithium.  As you probably noticed in my recent posts, my mind has been all over the place, like it was full of live wires not attached just sending shocks and sparks everywhere.  I couldn’t even see through all the brain activity or hear through it to barely perceive the ‘real’ world that everyone all agrees is there, that everyone sees, the table, the tv, the computer, the room.  It was as if I was about to pass out, when all the colors invade your ability to sense, until the feeling either passes or they give you the smelling salts…and the smelling salts actually make all that distortion fade away and your brain goes back to seeing the world around you properly again, and you ‘wake’ up.  Except, of course, nothing works on a bipolar brain that is like that when it is like that, so you just keep going without actually seeing or perceiving, on the verge of passing out.  

So they gave me an increase in the amount and frequency of trazodone, which i usually was taking only as a prn when and if i noticed i was getting nervous, jittery or anxious during the day. now i take it at a higher dose, and i do it 3x/day.  They also added ambien for sleep, cause with my brain malfunctioning, I haven’t been made tired by my normal seroquel at night.  not only did they add the ambien, they doubled the dose of the seroquel on the idea that more of it would also help with my sleep and it would also add to the anti-psychotic support of the depakote.  But they want to still keep going with the depakote and not go back to the lithium.  And they wanted me to stop the cymbalta, the only antidepressant that has ever worked.  I was afraid to lower or stop it since it has really kept the depression from being strong while I was on the lithium.  But they thought it was feeding the mixed state I’m in.  I think getting off it or lowering it might make me go from a mixed state to a constant depressive state right now.  And if I was unable to get out of a bipolar depression, I might actually be a danger to myself in the very near future.  At least in the mixed state, I am going from one extreme to the other, and I know the depression won’t last, and neither will the mania.  Even though still being in the mixed state is horrible, is almost impossible to function in at all.  Stringing words together to make sentences is such a challenge, so difficult to concentrate, to think.  So hopeless feeling, can’t stay like this either.

So, now that I’m taking the new mix, I am still not being made tired at night, not with the extra seroquel, or the extra trazodone, or the ambien.  It is taking 1-2 hours for me to fall asleep after taking them.  But during the day I am much more somnolent, much more removed from the world. I am kind of like a zombie, but I can still get up and do things, just a lot slower and harder to think through what I am doing.  And it feels like most of my emotions, my feelings in relation to any situation I’m in, are extremely blunted.  I smile when something is really funny, but no more.  I make no movement or change when something is very sad.  I can think clearer, but it takes so long to put together the thoughts.  My brain is so wrapped in cotton or saran wrapped it seems to be protected from any emotions at all, but the smallest, in response to the world around me.

So, I guess I’m feeling better.  No big ups or downs.  No running around like a chicken with its head cut off.  No crying endlessly for no reason, wishing with all my might I could go to the hospital or find a place alone to end my sadness.  But knowing I can’t because what would happen to my kids?  But now although I am ‘stable’, I am also removed, slowed, and dulled and blunted.  I lack almost all emotional response.  And I am still not sleeping well. This is not how I want to live either.  So, is it really better?

I wonder if I will ever be able to get back on lithium?  Or if they will just keep adjusting my peripheral meds until it is more tolerable?  How long until I feel like myself again? (if ever).  Was it all my mistake when I gave in to the pressure from my psych doc to try other mood stabilizers? Maybe I should have stood my ground, even though it seemed to be childish?

So, my next appointment is in 8 days.  Guess we’ll see then.

I Think I’m a Bad Bad Girl

So, y’all probably know I’m moving on Monday, so we are packing starting today.  And y’all probably know I’m all wonky from switching meds and its not working right now.

So, I found out I could take a Title Loan that I already had and have it refinanced at a different Title Loan company for less interest and shorter terms.  Plus, a little bit more cash too, for the deposit on the new apartment.  So, I really wanted to get this done today, so all my ducks would be in a row on Monday.  But they needed 3 personal references.  Well, as it turns out, I don’t actually know 3 people on a ‘personal’ level.  I mean, I know doctors, and nurses, and clinicians, and other caregivers.  But I only know 2 people who are actually willing to say they know me, they are not caregivers, and they think I’m reliable enough to give a Title Loan to.  So, that about shot my whole day, and burst every bubble I had left, and I about lost it right that moment.  So, eventually, after 3 hours, and after running through my cell phone contact list for the nth time, I finally thought, “Why don’t I call my Case Manager at my Mental Health Clinic, and maybe she will do it,” following the logic that my Case Manager is someone who can help me access resources in the community, and stand up to say I’m a real person, and do it professionally, because it is a way of advocating for me, a way of getting me resources, etc.  So, I took a big breath and a big chance, and I called her up at the clinic, and she was actually in (!!) and so I asked, and she was very nice and said, “Sure”, right away.  I was so thrilled.  But then, after I hung up, I told the agent she could call my CM at the clinic to verify me,  and the agent says, “No, it has to be a call the agent makes to the other person’s reference’s cell phone or home phone.”  So, I call back to the clinic, get my CM, and tell  her that, and she is suddenly very displeased, maybe distant sounding.  Not exactly angry, or mad, but not happy.  She tells me she never gives her numbers out to clients, so I say, that’s ok, I don’t mind that, I get that.  And I do.  But how was I going to get this to work now?  So, the agent person finally agrees to talk to my CM on my cell at the clinic just to get my CM’s cell number and then call her back to prove it was her.  So, that was it, I got the money then.

But right away, I felt so so bad.  I knew right away I had crossed the line, expecting others to do things for me that I don’t have a right to expect.  Pushing whatever relationship I have with someone to the edge, just milking it to get absolutely everything I can from it.  Sucking them dry.  Abusing them and taking advantage wherever I see I can.  I know she must be mad at me now, I know she must think badly of me.  She is probably really thinking how she went so out of her way to help me on Thursday, by getting me in to an ER appointment at the clinic for my meds being wrong on Monday that I just took that from her, and now I’m just take take taking by getting her to be a reference to my Title Loan.  How can I be a grown up woman and only know 2 people (personally) who will admit to knowing me and thinking that I am not a serial killer?  My ex wouldn’t even answer his phone, my only living family (the elderly sisters who are my  cousins, whom I recently saw, and whom have now been bullied, threatened and intimidated to not talk to me by my step mom) refused to answer the phone as well…because they knew it was me by the caller ID.  So, those 3 people, step mom, cousins, and ex…not one would be a reference for me to get a Title Loan.  So, I have only 2 people who even admit to knowing me, and to thinking I’m an ok human being.

And now, I know, I’m not a good person.  I’m nothing but a bother, a burden.  And I just can’t stop taking, pushing people further and further away because I just don’t know when it’s too much.  I should have known not to call my CM.  I should have known before I tried that it was inappropriate, that it was a violation of the client relationship thingy, that I was crossing too many boundaries.  And now, I’ve been bad.  Very bad.  I know I’m very naughty.  I feel so guilty about this.

Maybe I can quit thinking of this while I make myself pack for our move on Monday.  Think I’m gonna go to bed soon–not feeling very manic tonight (finally, ffs!) since I have been up for the last several days but not able to be organized or productive.

Eeny meeny miny mo….

well time to head off to bed 🙂

Bad Time of Year?

Just seem to be noticing that lots of us in blog land are feeling more scrambled and out of control than normal.  maybe its the coming of the fall, maybe the days starting to get shorter.  i don’t really know.  but i hope all of us start to get back to our normal level of discomfort really soon.  this is tiring and wearing and i am about done.

all because i felt some real or imagined pressure from some rather real doc to change my mood stabilizer.  anyway altho i resisted i gave in eventually feeling that i was acting like a child with a tantrum by not even considering other options that who knows might work just as well.  well, i was wrong.  i should have stuck to my guns.  i feel like crap, im not thinking worth a shit and im swinging on that old pendulum rapid, slow, erattically and not even in a straight line back and forth!  i’m swing forward and backward and sideways too.  and i just don’t know what to do until they get my power in my brain turned back on so its functioning right and those damn zig zag lightning bolts and yells and screams and tears and pictures of everything flashing in my eyes goes away and ‘normal’ returns once again.

normal, which isn’t even normal.  which is still somehow outside the pale of where most people live, normal for me for bipolar everywhere, where normal is no more electric bolts in your brain, no more images flashes thoughts screaming and racing around.  but no more feeling either, every inside passion, every fire, tamped down.  don’t want this, this crazy in my head, but don’t feel alive when i’m well.

they talk, they all talk about recovery but there is really no such thing.  for normal is never normal,  it’s just less insane.  its never ok, it’s never gone.  it’s just not as bad as what might be.  it’s flat, it’s plain, it’s black and white, maybe a few shades of gray.  but it is not normal.  it just looks like normal and it’s the best we got, so we better take it, baby, while it’s hot.

 

“Mercedes Benz” by janis joplin

Oh Lord, won’t you buy me a Mercedes Benz ?
My friends all drive Porsches, I must make amends.
Worked hard all my lifetime, no help from my friends,
So Lord, won’t you buy me a Mercedes Benz ?Oh Lord, won’t you buy me a color TV ?
Dialing For Dollars is trying to find me.
I wait for delivery each day until three,
So oh Lord, won’t you buy me a color TV ?

Oh Lord, won’t you buy me a night on the town ?
I’m counting on you, Lord, please don’t let me down.
Prove that you love me and buy the next round,
Oh Lord, won’t you buy me a night on the town ?

Everybody!
Oh Lord, won’t you buy me a Mercedes Benz ?
My friends all drive Porsches, I must make amends,
Worked hard all my lifetime, no help from my friends,
So oh Lord, won’t you buy me a Mercedes Benz ?

That’s it!

“Me & Bobby McGee” by janis joplin

Busted flat in Baton Rouge, waiting for a train
And I’s feeling nearly as faded as my jeans.
Bobby thumbed a diesel down just before it rained,
It rode us all the way to New Orleans.I pulled my harp from and my dirty red bandanna,
I was playing soft while Bobby sang the blues.
Windshield wipers slapping time, I was holding Bobby’s hand in mine,
We sang every song that driver knew.

Freedom is just another word for nothing left to lose,
Nothing don’t mean nothing honey if it ain’t free, now now.
And feeling good was easy, Lord, when he sang the blues,
You know feeling good was good enough for me,
Good enough for me and my Bobby McGee.

From the Kentucky coal mines to the California sun,
Hey, Bobby shared the secrets of my soul.
Through all kinds of weather, through everything that we done,
Hey Bobby baby kept me from the cold.

One day up near Salinas, Lord, I let him slip away,
He’s looking for that home and I hope he finds it,
But I’d trade all of my tomorrows for one single yesterday
To be holding Bobby’s body next to mine.

Freedom is just another word for nothing left to lose,
Nothing, that’s all that Bobby left me, yeah,
But feeling good was easy, Lord, when he sang the blues,
Hey, feeling good was good enough for me, hmm hmm,
Good enough for me and my Bobby McGee.

La la la, la la la la, la la la, la la la la
La la la la la Bobby McGee.
La la la la la, la la la la la
La la la la la, Bobby McGee, la.

La La la, la la la la la la,
La La la la la la la la la, hey now Bobby now Bobby McGee yeah.
Na na na na na na na na, na na na na na na na na na na na
Hey now Bobby now, Bobby McGee, yeah.

Lord, I’m calling my lover, calling my man,
I said I’m calling my lover just the best I can,
C’mon, where is Bobby now, where is Bobby McGee, yeah,
Lordy Lordy Lordy Lordy Lordy Lordy Lordy Lord
Hey, hey, hey, Bobby McGee, Lord!

Yeah! Whew!

Lordy Lordy Lordy Lordy Lordy Lordy Lordy Lord
Hey, hey, hey, Bobby McGee.

“What Good Can Drinkin’ Do”by janis joplin

What good can drinkin’ do, what good can drinkin’ do?
Lord, I drink all night but the next day I still feel blue

There’s a glass on the table, they say it’s gonna ease all my pain,
And there’s a glass on the table, they say it’s gonna ease all my pain
But I drink it down, an’ the next day I feel the same

Gimme whiskey, gimme bourbon, give me gin
Oh, gimme whiskey, give me bourbon, gimme gin
‘Cause it don’t matter what I’m drinkin’, Lord, as long as it drown this sorrow I’m in

I start drinking Friday, I start drinking Friday night
Lord, I start drinking Friday, start drinking Friday night
But then I wake up on Sunday, child, there ain’t nothin’ that’s right

My man he left me, child, he left me here
Yeah, my good man left me, went away and left me here
Lord, I’m feelin’ lowdown, just give me another glass of beer

What good can drinkin’ do, what good can drinkin’ do?
Well, I drink all night but the next day I still feel blue!

you can substitute any other part of your life, other than a man, and her songs still ring just as true, still hit those same notes of struggle and pain and the desperate hope for something better, for some bit of happiness.

 

Metabolic Weight Loss, Instability, Regrets and the General Pointlessness of Things

So, I am partway way through my 3rd week of 4 of Metabolic Weight Loss nutrition and exercise program.  Have I lost any weight?  No, I had lost 1 lb, but then I switched from Lithium to Depakote, whose side effect turns out to be salt and water retention!  No kidding!  I jumped out of the frying pan  (lithium) just so that I could jump into the fire ( depakote).  Stopping the lithium was supposed to stop the ‘voltage dependent drug-induced R(enal) T(ubular) A(cidosis)’ that was characterized by my body thinking lithium was Salt, and wasting the real Salt instead, leaving way too much Potassium in the body that can’t bind with lithium like it is supposed to do with real salt.  So, my nephrologist was in agreement with me that since the lithium was so effective in stabilizing me, then we should stay on it as long as possible.  However, my psychiatrist felt that it was imprudent to do that, and really pushed and pushed for me to change off the lithium to anything else.  So, after like 6 months, I finally gave in to her and agreed to switch to depokate.

Well, we expected the hyperkalemia (excess potassium) to resolve, since my body would not be wasting its own real salt anymore since there would be no lithium to trick it.  So, all my symptoms were supposed to recede and be ‘normal’ again.  But what ended up happening is that my feet just grow bigger and fatter and more and more painful all the way up to just under my knees.  I look like I’m walking on big giant stubs.    Sleeping or putting them up does little to nothing to help them go down.  I had to fight with my psychiatrist and my nephrologist just to get an earlier appointment to see my nephrologist sooner.  Then my Case Manager at my mental health clinic insisted I acknowledge how she had made it all come together so I could see my nephro sooner, because she talked my psychiatrist into talking to my nephro about the swelling issues.  Except, I saw my nephro yesterday, and he had never heard of either my case manager or my psychiatrist or my clinic and the only reason I got in to see him earlier was because he heard my messages and was concerned about what I described going on.  So, my new case manager is not just trying to grub for acknowledgement and validation from me, her client, but she also lies about what she does ( and probably about what she doesn’t do, too).  Neither she nor my psychiatrist had anything to do with me getting my nephro to see me sooner.  It was ALL me!  That means, I am really failing to be getting the help and support of my psych team and they are not doing any of the communication between providers that they are supposed to do and the follow up too.  That means I am doing all the coordination and pushing and organizing all on my own.  So what good is it to be determined as SMI (Seriously Mentally Ill) and then being told to go to ma particular clinic for all your cares so that everything will be coordinated and followed up on so you, as a SMI person, will not have to fight the system with each interaction or symptom or whatever.  So that you, the disabled person, will supposedly be getting help to do and stay on top of all these things and not have to get stressed out and can concentrate on getting better, more stable, more ready to return to work or volunteering, etc.  But they don’t.  They just keep pretending and taking all the credit and leave you to fight all the battles on your own just like as if you had no SMI designation or had no Disabled designation, or were a regular working person contributing to the community with little more than small issues to be dealt with, not the large ones of Bipolar, Schizophrenia, etc.  But now that I am recognized as disabled and SMI, I have no choice to what services I can receive.  I am forced to go to 1 out of 1 clinic, and I am forced to work with the ‘team’ I am assigned (Psychiatrist, Nurse, Case Manager, and, on some teams, you even have to accept the primary care doc that is on your team–you can’t even go out into the community to choose your regular doc!  Every doc you see must be in the clinic is where they are going with this.  They even have a pharmacy you must use in the clinic as well).  And now, I have no choice over any healthcare providers at all.  I am lucky they have not yet put me on a team with a primary care doc, or a nephro specialist.

So, anyway, back to the original point.  I finally got thru to my nephro that I needed him to see me, and he did.  He is such a great and awesome doc–my best doc by far.  Wish he could be my doc for everything!  So, he is concerned that my body is not recovering like it should be.  Now that the fake salt, lithium, is out of my system, I should hold a normal amount of salt in my system to bind with the potassium.  They should both be at about the same ratio.  I should not have to worry about the hyperkalemia anymore, nor should I have to worry about hypernatremia.  But, I am definitely having hypernatremia issues—that is, way way too much salt leading to this huge swelling.  This should not be happening, except there is a rare possibility that I am having a a rare side effect of the new med, the depakote. Once in a great while, some people get the side effect of intense swelling and salt retention.  Hah!  I let them talk me out of taking a med that we had gotten well controlled that worked wonders for my stability, just so I could avoid the future potential pitfalls of that med on my kidneys, and now I’m on a new med, which is not causing me heart and liver issues by retaining salt and water!   And now, this is not well controlled the way the lithium and its side effects were.  And the depakote is not stabilizing me as well as the lithium was either.

So, back to the original point.  How am I expected to stay and maintain a healthy weight, a healthy body, and a healthy attidude and move forward in my mental health recovery when this is what I’m dealing with?  I can’t lose weight cause all the mood stabilizers have that as an effect.  Most of them also have really bad effects on me like the lithium leading to the kidney problem and the depakote leading to the heart problem.  And if I’m forced to keep gaining weight, and I am having difficulties with all the related side effects, then how would I be able to lose weight, even with the metabolic stuff?  And if I can’t stay sane and lose weight and deal with the heart and or kidney or whatever other issues would happen….then how am I supposed to stay positive enough to move forward and become a productive citizen again?  Is it the illness, the side effects, the meds, or the complications…that keep me disabled?  That keep me from being a useful human being again?  And damn it, I am tired of suffering and tired of my life never being able to move ahead.  Tired of being unable to do things.  Tired, so tired.  Something has got to give.  No matter what I do to get better, something else is sacrificed to make it happen.  So there is always something never getting better.

And I am not the mother I thought I could be, and I am barely holding on to life for my kids.  No, really, I mean if my ex misses one support payment because he changes jobs, or something else, we could end up on the street.  And I am certainly not capable of raising a family like that for the next 2 years.  I couldn’t even take care of me in that state for a month.  I live in fear of this every month.  I just found out my ex is moving to California from Az, where we all currently have been.  But his agency can’t find him computer programming work in Az, so they found him a spot in a place in Cali.  But he’s not happy with it, it won’t meet the cost of living changes.  And he’ll be looking for a new job once he’s there.  When he switches jobs, a new court order must be petitioned by me, then the court takes several months from time of filing to rule on it, then the court orders the employer to hold the money and pay it to the state the custodial parent is in.  Then the state processes the funds and distributes them to me.  So, if he even misses one normal payment of the 2x/mo….we are evicted.  We lose our car insurance and can’t drive.  Our house of cards falls apart.

So, I think I have made mistake after mistake, leading to a tenuous existence from which my grip will surely slide sooner or later.  I should never have quit working.  I should never have stopped the lithium.  I should never have gone down this path.  Where to go now, to start over or push on, I don’t know.

Safe

What is it to be ‘safe’?  For me, it is complex, that’s what it is.  It means knowing I have a roof over my head from month to month.  It means knowing I have (any) transportation to get where I need to go.  It means knowing I have enough food for the month.  And just maybe, if I’m lucky, it means having TV and internet, and maybe phone.  It means not being hurt by someone, by anyone, by any situation or encounter or environment.  

Jeez, I guess I ask for a lot.  I don’t think I have ever felt ‘safe’ in all those areas, ever, once in my life.  I have always been on the run, fleeing from one ‘unsafe’ to the next, promised ‘safe’, only to find that it was also ‘unsafe’ in some way.  What I really want is just once, once, to be ‘safe’ about everything.  I feel like I have put in twice my number of years trying to find ‘safe’ while everyone else seems to put in half the amount of time and effort and they actually manage to achieve it.  I am still looking for it.  I am still running scared.  And I’m getting older.  And tireder.  And slower.  And don’t feel like playing this game anymore.  I don’t feel like searching and running anymore.  I want to rest.  I want to sleep.  I want to have something worth having.  A reason to stay.  To wake up every day.  

I actually had a therapist to whom I confided that I felt I ran twice as far, twice as fast with twice the effort and ended up treading water, compared to other people.  He agreed.  He said it was true.  He said those of us with PTSD, with BiPolar, with Trauma and Depression, have that as a common experience.  That it takes a lot to make it all pay off.  He wasn’t even able to assure me that all that work would ever pay off.  That I would ever find that elusive ‘safe’.

Does it even exist for us?  for me?  

Something Strange is Happening, And You Don’t Know What It Is, Do You, Mr. Jones

And a thank you to Bob Dylan for the title of this post tonight.

Have you ever just felt strange, strange in your own skin, in your own routine?  Normally, it doesn’t feel strange at all, after all, its your normal routine.  But something has felt off all day today.  Something wrong somewhere in my routine, somewhere in the back, pricking at my brain.  I know something is happening, but I just don’t know what it is.  All I can say is I have been a bit off all day, a bit wonky.  Something not right.  I was jangly earlier, y’know, how the sound of a chain pull on a light sounds, or how it feels in your hands moving, or a handful of change that feels like your spine when you move.  Words jangle too, even ones in your head.  And your whole nervous system is affected.  You seem to see things superimposed on themselves, like you are seeing twice, once for each clink of coins, for each chain pulled.  Your whole nervous system, even to moving your body, feels out of sync, like its a marionette, jerking and spasming as you try to move, walk, or sit.  Even sitting, your nerves are still clanking off-rhythm, you twitch, jerk and hear the coins.

I just hope that tomorrow is normal again.  I hope the jangling stops, and everything is ok.  

 

I knew I Shoulda Kept My Mouth Shut

i should never have said i was feeling the teensiest tinsiest bit better, a tad bit happy even.  because after i spent a great session i went home and found out that the agency that will be providing behavioural health services to the state Medicaid beneficiaries has been changed effective April 1.  OK, no so bad by itself.  but the then the letter says since MI is going to now be providing all Medicaid people with mental healthcare, they decided it would also be more efficient (and allow them to more closely monitor their conditions) that they will force any people who are ‘SMI”, or Seriously Mentally Ill (basically if you are unable to really work a real job full time due to mental illness—and that is me—)  all Medicaid mental health beneficiaries who are SMI will be forced to change their Medicaid insurance plan to the MI plan as well (the one that will be providing general mental health and SMI—if you are SMI, you will also be forced to use MI plan for all you PHYSICAL healthcare as well.  If i am forced to change to their Medicaid physical health plan, then i will automatically be dumped from my Medicare plan since, it is a dual plan, meaning my current plan gives me all my Medicare and Mediciad physical health coverage.  If i am forced to drop my physical Medicaid plan because I am SMI, then I will also be forced to drop my Medicare plan, and the only plan I will be able to get for my Medicare services would just happen to be, yes, you guessed it, the new MI plan.  So, because my mental health care is categorized as SMI, and MI is now going to provide all SMI and regular mental health Medicaid services, I will be forced to change my Medicaid physical health plan as well.  And, if I am forced to do that, then I will also be forced to drop my Medicare plan and again go to the MI plan.

I have seldom felt more raped, abused, beaten and whipped than I do right now.  I no longer have choice of Medicaid physical health plans, I no longer have choice of Medicare physical plans, and it is all because I am listed as SMI instead of ‘regular mental health’.  So, this insurance plan gets to force anyone listed as SMI to take all of their insurances, but those listed as general mental health get to choose their Medicaid plans and if they are on Medicare, they also get to choose that plan.  But not us SMI–apparently since we are such a ‘sick’ population, we dont’ get the right of choice in healthcare, on insurance, rx, or on doctors.  I will have to stop seeing all my doctors.  All.  And get all new ones covered by MI instead.  Why should I be persecuted just because I have a more Serious Mental Illness than some?  Why should my choice of insurance and doctors be taken from me?  What will I do without my therapist?  I have been working with her almost 3 yrs and I am just going to be forced to change within the next 6 mo.  And i will lose my psychiatrist, my case manager, my nurse, not too mention all of my non mental health related providers.

Well, I shouldnt have talked about starting to feel better.  I should have known something like this would come along.  It always does.  And now it has.  And now i wish i never started to heal, to feel better, i wont win anyway.  i wont accept what they say. and since i cant keep seeing my therapist, or any other providers, there is nothing for me to gain–only lose, i wont let them win by forcing me to take something i dont want instead, i wont roll over and play dead, i wont let them control me.  so maybe i die,but they lose to. they wont make me say ‘thank you may i have some more’ either.  they’ll see what happens when they try to take away control from the people they are supposedly trying to help.  even one person refusing to be abused by them and dying will be enough to make the state take a look at what they are allowing MI to do underneath their very noses to the ‘vulnerable’ population they claim to be serving.

Sitting With It: Update

Well this topic kinda goes along with the whole kidney doc issue and getting a second kidney doc opinion.  So, before when I wrote I didn’t know what choice to make regarding sticking with the lithium and having my body fall apart, or, switch to a different med combo so my body would be fine, but lose some of my mental clarity, functionality.  And I guess I have sat with it long enough now.  I am going to stick with the lithium until there is no other option in any way at all.  And, if the body damage done by the lithium is irreversible at that point, then there would be no point in switching at that time anyway.  So, pretty much, I’m sticking with the lithium til the very end.  Only time I would switch meds is if I am sure that the body damage from the lithium definitely precludes using it further, and if I am sure the damage would be reversed upon stopping using it.  Otherwise, lithium it is, come hell or high water.  It’s the thing that keeps me alive, and the thing that will be my undoing.

Sitting With It

Well, so I have decided to fall back to my old standard for when I can’t make a decision on some topic.  I find that ‘sitting with it’ often allows the decision/answer to float itself to the top of my brain, presenting the answer to me.  The only thing with that though is that I never know just how long I will have to sit until it all gels and the purified answer rises to the surface.  I am kind of antsy, and kind of in a hurry to resolve this situation about whether or not to stick with the wonderfully working, slowly killing me, lithium.  The anxiety is really bad, with this decision hanging over my head.  I wish my brain would hurry up and tell me what to do, cuz the waiting is killing me.

Eeny meeny miny mo….