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!  

I Am a Wild Animal

I am a wild animal, and I can’t keep it inside. All my life I have tried, so hard, to keep it in deep inside. But when I have fallen into my manic, mixed, depressive, sometimes psychotic episodes, I can’t keep it in. The wild, feral animal that I really am escapes and I can’t call it back in.

I have started over so many times. Every time the animal escapes, I have to pick up the pieces of my life, the parts I have destroyed, the people I have attacked for no purpose. I lose it all, and I start again. Now I am tired. I am losing control over the animal inside, it is growing stronger. I don’t care if I hide it. I don’t care if I take meds to help keep it sedated. I don’t care anymore. I want to quit fighting myself and let the animal take over.

But that would be wrong. I would hurt people and that can’t be tolerated. So just let me end us both, the animal that is gaining the upper hand, and me, who is too weak to do anything. Let us just go forever. Finally. No more struggles.

On How Acid and BiPolar Are the Same…An Essay

As a young college student, I found myself experimenting with the usual course of mind-altering and mind-expanding (so-called, anyway) drugs, among them, of course, LSD.  While I ever only tried it 2 or 3 times, and I never had quite the ‘mind-altering’ experience I was promised…I do remember noticing certain changes in my perception of the world around me.  For example, the playground at the park was quite a bit more fun than I had remembered it being for a really long time 🙂  Even more, everything I thought or said, seemed to be more alive, more colorful, behind my eyes, in my head, out loud.  It was never a large group of us, and there was always a ‘sitter’ to help keep people grounded enough not to freak out.  But the gentle differences I noticed made life seem more vivid, more tangible, almost like I was more alive.

As I got older, got a real life, but still in college, I didn’t pursue my friendly visits with LSD, although drinking was still my almost nightly buddy.  I got married, got an off-campus job.  Real life but still in college.  Then I started having these episodes, these moments, or sometimes more than moments, phases, days, hours, where I saw the world in more than vivid color, I saw it in techni-color and panivision on top of all the real colors already there.  Things stood out as more than 3-D against the paleness of the normal things, others stood out as larger and more dominant, more in my focus.  Sometimes I felt the world seem enchanted, amazing, wondrous.  Others I was wanted it to be just flat and gray again, something I could handle not overwhelming.  Sometimes I thought the colors and feelings of life would never return and I was hopeless.  I didn’t know then that what I was seeing and feeling was not how everyone else saw the world, the things in it.  I still thought I was sharing the same kind of disruption in perception that I shared with my friends on my trials of LSD.  I thought this is how people feel and see and struggle through life.

It was only through my husband that I got a teeny tiny taste that this was not typical of others, that this was not actually the norm.  I wasn’t able to really understand that, though.  It seemed like I was interacting and reacting just like every one else to me.  I couldn’t understand how I was different.  But I started being more aware over the next few years that I seemed to live life and experience life much more intensely than anyone else I knew.  That I was more dedicated, more fastidious, more efficient, more awake, more energized, needed less sleep, needed less food.  That I couldn’t understand why others had to stop to eat and sleep, and they seemed to be so lazy and careless to me.  It seemed that no one wanted to actually do or accomplish anything, save me.

Everything I laid my hand to, turned to gold.  Except friends, my husband, where I started having more and more issues, but I couldn’t see it had anything to do with me.  It just seemed as though they were receding from me, and I couldn’t see why, so I just accepted it.  Although I was having more and more short-lived volcanic eruptions, I still felt as though it wasn’t anything to do with me…I felt it was my husband, being slow, being stupid, not following what I said better, driving too slow, just not keeping up in general.  But as fast as I would erupt, I would burn out, so by and large, although he didn’t really enjoy this new development, he said that he loved me enough to put up with the short eruptions to have me for the rest of the time.  I began to get that there was something with me, but I couldn’t see what it was.  I couldn’t see how my eruptions were not proper, not appropriate.  They seemed to be the only way to behave, to react.  I knew there was something I was missing, and it probably had to do with me, but I just couldn’t get what it was about me that was not ‘right’, that was ‘off’, somehow.

It wasn’t until after my 1st child, my son, was born, that I had my first real psychotic depressive episode.  Don’t get me wrong, I realize now that most of my childhood years, and teen years, I was really depressed and angry…but not psychotic, not suicidal for every moment.  But after my son A was born, I was really psychotically depressed.  I don’t even know how I made it through that first year.  And by the time he was 2.5, and my 2nd child, my daughter H, was born, I realized I needed help, and lots of it.  I could finally see how much my perceptions were ‘off’, how much my thinking and behaviours weren’t ‘right’ compared to others.  I wasn’t psychotic anymore, but my perception was really different.

From 1999 when I first noticed how I was so different until 2005 i struggled continuously working with my doctors (who I later discovered were more like mental butchers) trying to find the right med combo.  In 2005 I had the most severe mixed episode I had ever had, making most of my life before that look tame.  For a little more than a year, I was in the most awful psychotic manic episodes where I was doing anything and everything that was dangerous, risky, and made no sense at all.  I was basically a rubber ball bouncing all directions, doing things that looked euphoric (sex, drugs, etc) but were in fact signs that I was not grounded in any sense to the world, that I was in fact actively suicidal, and hoping for a passive death.  Then those psychotic manic extremes gave way to the most depressive psychotic extremes I have ever experienced.  I woke up one day and saw how badly, how crazily, how hurtful my actions for just over a year had been during that psychotic mania (with some severe depression thrown in for spice).  I saw how I was alienating everyone in my life away from me, how I hurt them more than I ever would have done, how I wished I could have seen and stopped myself from all of this destruction.  I wanted to know why my docs had allowed this, why I hadn’t been hospitalized, why my meds never got worked out better.  I was so devastated, so horrified, so terribly sorry, I ended up spending the next 6 months in my bed sobbing uncontrollably, only emerging to use the bathroom and find some crumbs to eat in a dash, then back to bed sobbing more.  Then came the blessed sleep, sleep that I couldn’t have enough of, that I begged for every waking moment.  It was the only time I didn’t feel I was being ripped apart and all my body and brain being tortured unrelentingly.  I thought I would never stop crying, and never emerge from my bed.

My husband was so supportive, he stood by me.  He tried to ground me when I was flying and flirting with death, he tried to bring me out of my tears when I wished I could just sleep forever.  But a marriage can only stand so much, and I had hurt him so badly, and he was in such need of companionship of a someone not so ill, that the bond between us was broken forever, even though he stayed with us another year until the end of 2006.  Then, I lost my husband to another woman, a woman I called friend.  When this happened he quit supporting the household of me and our kids.  He quit his job, cashed in his pension and spent it all on her.  The court did not stop him doing any of these things, even though they are the norm.  The court instead brought CPS into my home, and said because my husband left me and failed to pay child support or rent, that I was a neglectful parent, because I was not capable of working and was in the process of applying for disability.  They made me meet these impossible goals-they said I had to make money, have a job, but if I couldn’t work because I was so ill, then I was not capable of raising my kids.  They told me to go to the hospital when I felt suicidal or unstable, but when I did, they took my children from me and put them in foster care.  Luckily one of my friends signed up to be a temporary foster mother to my kids, so for them it was not as bad as it could have been.  They finally decided I was unfit permanently, and was going to lose custody.  I begged their father to take them with him to Arizona where he had moved from Iowa.  He agreed.  They spent a year there with him, and I was the most bereft ever being away from my kids, from being a mother to them.  I was so desperate, so hopeless, I tried to kill myself over 20 times in that year I was away from them.  I still couldn’t understand why the docs couldn’t find any meds to help me stabilize.  I couldn’t find any reason to live without my kids.  After that year, I finally was able to move to Arizona, so I could at least have visits with my kids, be in their life.  For the first time in 3 years, I saw hope, I saw a life possible through all the darkness.

Bipolar is like living in hell, unconnected to the world around you, stuff in your head that doesn’t make sense, and you think it does.  Colors, sounds, inability to sort, inability to make thoughts.  Bipolar is just like LSD, except it never really wears off.  Even if you have found a good cocktail of meds, every so often, the disease breaks through again, and at first seems fun like Acid, but quickly turns sour as it overstays its welcome, and becomes a really bad trip.  Some might be drawn to Acid for the induced psychosis, but when you have to live it, when it is part of your life forever, it is no welcome escape.  It becomes a prison in your mind for your mind.  And most people grow out of the desire to experiment with such drugs, as regular life becomes the norm for them. But those with bipolar cannot grow out of it, cannot stop it from happening.  So for those of you who don’t believe or don’t understand bipolar, drop some acid and imagine it lasting forever, even when you can’t stand it anymore, even when the trips are bad, even when you don’t understand what is happening, and you want to get off the rollercoaster.  Maybe then you will understand your friend or family member, who seems like they could be ok, be fine, if they just wanted to enough.

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.

 

Maybe…

Maybe I’m not really sick anymore.  Maybe I just learned it’s easier to say I am.

Maybe if I just tried again, got up on that horse again, I could be someone.

Maybe I was never sick to begin with, just sick of life.

Maybe I’m really better now, Maybe things are better now,

But I won’t give them or me a chance to grow, a chance to bloom, to afraid to fail

Again.

 

What will happen if I open the door, Open the door to life again?

What will happen if I step outside, step outside of my safe place again?

Step outside into the real world again, with expectations, obligations, and responsibilities?

Where I have to perform like the elephants at the zoo and the monkeys at the circus?

 

What if I make mistakes, What if I can’t perform anymore?

What if I can’t make the grade, fail to beat the score, can’t move fast enough anymore

Can’t keep up with the pace, find myself again failing the race.

Lose my place, keep trying anew, finding I can’t make a fit anywhere.

 

Things going wrong, haywire again, find myself stuck back inside

Unable to venture out, unable to win, the bar too high that was once so near.

Finding I’m back at the bottom, but this time there is no net

No one believes I can’t make it yet.  They say I’ve had time enough

To get back into that groove, can’t keep quitting when it gets too tough.

 

No more support, no more kindness, no more safety net to catch me now.

End up back in my head, can’t get out ever again

Can’t leave my shelter, my safe space, I know now

No one will believe me if I try again and fail.

 

They will say she is just not ill, She is just too lazy

To do her share.  She is selfish, expects the world to

Work for her and us to tell her so.  She wants to wallow

In her despair, Brought on by her own failures.

 

The system will say she had her chance, that if she had been telling the truth

She never would have tried again.  She just could have stayed inside, no one

Ever questioning the tide.

 

But maybe I was wrong, all those years ago…

Maybe I wasn’t really sick, just swallowed up in my own sadness,

In my inability to change my life.  Maybe I just gave up, gave in,

To my inner world that said I’d never win.

 

Maybe I should have kept trying, and I would not be so stuck today

On whether I deserve a second chance at life, or whether I should stay.

Inside.  Safe.

 

So I’ll never know if I could have won, Never know if I could do it again.

The risk is just too high, can’t be a failure all over again.

Once is enough, and done is done.

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?  

Metabolic Weight Loss and Nutrition

Ok, so the deal is I am supposed to eat 5-6 medium sized meals a day.  I can pretty much eat what I want, but they prefer if you indulge more in proteins than in carbs (duh), but for the most part it doesn’t really matter.  Also, I am not supposed to follow any other diets, like for cholesterol, salt, calories, whatever.

So there are 2 appointments each week. The first day of the first week was an intake–they have to do a complete pain assessment, as far back as you can remember–and then (supposedly) they tailor your exercises to your weight and eating habits (5-6 meals) and to your pain.  So, by eating 5-6 meals a day, you are increasing your metabolism, so you will actually lose weight when eating 5 meals compared to gaining weight when eating only 1 meal.  So, the 2nd day of the 1st week was some light (to some) exercises.  That day, my neck happened to be bothering me quite a bit, but I had held off on the pain pills until after PT just to see if it really helped.  So, I did mostly stretching kinds of things, raising hips while laying on hard surface, stretching neck, doing rows, riding the bike (but not at a particular speed, just whatever you can manage).  The one that really surprised me on how noticeable it was was leg lifts out to the right and left sides but making sure my toes were pointed forward.  It seemed easy, but I was actually exhausted and all rubbery and jelly-like afterward!  Anyway, my neck pain was relieved quite a bit, and I didn’t need pain pills or muscle relaxers either!  Oh and for weigh in, I had stayed the same for both appointments that week.

So, this was the first day of the 2nd week, and they added a few more exercises and skipped some of the others and increased some longer.  Again, I was especially surprised to see that the way I walk was causing me problems too.  Way back when I hurt my back over 10 years ago, I had one leg go completely ice cold numb for about 3 years, and apparently even after feeling came back to it, I had adopted a new way of walking with my toes turned out (duck-like).  So, we did some walking exercises and balance exercises ( I was never blessed with particularly good balance, and I have noticed it has been much worse the last 5 years or so).  The balancing exercises really showed me how much difficulty I have in just walking and standing.  No wonder I get so tired shopping or showering!!  I could couldn’t even stand on one foot with the other bent up at the knee for 5 seconds without having to restart.  Well, I have one more day for the 2nd week, and then there are 2 more weeks before I’m considered ‘done’ and I’ll have to fly on my own with what they have taught me.  This week on weigh in, I actually lost 1 whole pound (so, since I’m eating 4x more, that’s not actually as bad as it sounds!).

They said the next 2 weeks, (sadly, the last 2 as well), they are really gonna push me farther with the stretching and exercising so I can continue it at home and lose more of a real weight faster, plus be stronger and better, like the 6 Million Dollar Man (but not quite, lol!)