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.

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.

Just When I Think I’m Out….They Pull Me Back In

Thanks, Al Pacino, as the youngish Don in Godfather 2 for that quote and sentiment.

Tonight, just a list. A ‘food for thought’ kind of list.  A list that says, ‘how am I supposed to be getting well, when “it just keeps getting piled higher and deeper” ‘ kind of list.  Well, enough confabulating, the list:

Son’s car repairs, beyond what he can pay from his salary as part time at Taco Bell–$310.  Without this repair, the car will not pass emissions testing and will not get its tags and will be undriveable. The testing must be completed by the end of this month. 

My car repairs, which cannot be completed because I still owe the shop half the money from the last repairs.  And because my son’s car is already off the road.  $–unknown (due to accident, see later on list)

My son’s school fees-$200.  Daughter’s school fees-$200.  Son’s clothing needs-Some of everything.  Daughter’s clothing needs–all of everything.  Total-$400’ish.

Moving costs for August 3-rent on old place, rent on new place, +$300 deposit on new place, plus renting a moving van for 1 day-$50.

Copays ex just reimbursed me for that now have to go to other costs than to reimburse me.  Still need to pay provider the copays ex just gave me tho.  Hmm…$200’ish.

Insurance company for woman who rear-ended me on freeway in May.  On June 30, representative for insurance said they accepted 100% responsibility, but in mail 10 days later, written notice they were denying any responsibility.  They still had their adjustor come and do estimate (he said it was definitely the other car that caused all my damage, and he has completed and sent in his report–I talked to him to be sure).  They refuse to return my calls, even though their voicemail says will reply in 24 hours, I have left messages every day since June 5th.  Meanwhile, my car is driving very scary and am afraid to use it, or to have it seen at my shop, cause if I fix it, then the other insurance definitely won’t reimburse me.  Actually, this is the insurance that refuses to call me back:

Got divorce finalized in December 2011, applied for deferment or waiver at time of filing, so I had to pay nothing at that time.  Have never received anything from court since, until, July 15 when they sent me a collection notice for 20% interest in 30 days time if not paid in full by end of July–$400.  Told them I could pay it in September, they said too bad, so sad.  Pay or go to collections. Or try to get new deferral, but it won’t be approved because is from so far back.  Apparently, that is not their responsibility that they did not bill me appropriately, I was supposed to know I had a bill for x amount and pay it without a statement or invoice, etc.  They said I did not update my address, I said I did, and I had the scanned documents to prove it that I mailed in, and the postmark would prove it.  They said it has to be in person update of address to their specific court billing department, and that the normal updating of address for court is not for them and means absolutely nothing, even though I could prove I had sent it in.

Oh, and additionally, I get to refile for modifications to my divorce child custody and support and insurance, since my ex just told me he’s moving out of state on Friday, so he won’t be seeing the kids on weekends anymore and so he will have to increase the amount he pays in support for each of them.  Wonder what the fees for filing that will be, on top of the above $400 from 2011 that I was magically supposed to know about.  Maybe they can roll it all together?  And hit me for it all at once?  so I’ll be even more broke–if I get any more broke, I’ll be homeless eating at soup kitchens.  And I’m not being mellow dramatic.  And this is the courthouse and court that is acting so ridiculous:  

And then there’s the things that don’t cost money, but are so much fun to deal with that I just couldn’t leave them out.

First one, a 1.5hr conversation with a supervisor in my ‘team’ at my mental health clinic where I was trying to request a perishable food box, not the dry goods one.  I knew they were separate and from separate places.  But I didn’t know the names/labels the staff and case managers used to refer to them.  So, it turns out Food Box A-Dry Goods, is from a church and requires one’s case manager to fill a form out with the client a week before it is delivered to the clinic for client pick up.  You can only make one request for Food Box A-Dry Goods in a 3 months period.  I have never filled out a form, and have often received food boxes more than once in 3 months.  Also, the food boxes I have received were perishable, and my case manager delivered them to me, or told me when she had them so I could pick them up.  So, after going round and round that I never signed or filled out a form in 5 years of going to this clinic, where I was afraid I was going to lose it and burst out in tears, or ‘get that tone in my voice’ that makes people just walk away from me and ignore me forever, he finally said ‘well, case managers have the ability to go to 22+ food pantries to get perishable food boxes and deliver them to their clients.  Maybe this is what you are talking about?  And I said, flooded with such relief that I was afraid I was going to bow down on my knees and pray to God right then and there thanks that I was finally being heard, understood, and listened to, YES, THAT IS EXACTLY WHAT I HAVE BEEN TELLING YOU FOR THE LAST 1.5HRS.  THAT MY LAST CASE MANAGER DID THAT.  THAT THAT IS WHAT I WANT FROM THE NEW CASE MANAGER.  THAT IF SHE DOES NOT CHOOSE TO DO THAT (as it is optional for them to do that) THAT THEN I WOULD GLADLY FILL OUT THE FORM FOR FOOD BOX A-DRY GOODS, BUT ONLY IF I COULD NOT GET FOOD BOX B-PERISHABLE GOODS (which are up to case manager to do or not to do).  Then, he finally agreed to have her contact me tomorrow to find out if she does do FOOD BOX B-PERISHABLE GOODS, or not.  And if not, then I will fill out the form for FOOD BOX A-DRY GOODS, tomorrow.  And it only took 1.5 hours.  But I was REALLY proud of myselves for not bursting out into tears (the guy would have walked away if I had) or for ‘sounding’ argumentative/belligerent from frustration.  He would’ve walked away then too, maybe set security on me even.

And the piece de resistance, the mignon final, my late father’s wife, who is listed as Co Power of Attorney, Durable, for Health Care for my only living family (2 cousins who are sisters, who raised my dad) has shunned me, blocked me out of the loop concerning my two cousins, and has made my cousins believe that I am trying to steal their money and place them in nursing homes, when in actuality, I am trying to convince them to accept some home health and cleaning services so they can stay in their own home, by contacting the Area Agency on Aging and having them do a service counselling appointment.  Well, my step mom, now that my dad’s dead, has been trying to get their money for the last 3 years.  But when I actually want to step in and help them by having her do that, she shuns me and intimidates my cousins from talking to me or allowing the staff at the nursing home from talking to me, or allowing the Area Agency on Aging from talking to me, or their doctor’s from talking to me.  So, I am now effectively out of the loop because my step mom is going against my dads’ last wishes that my family should be in their house as long as they can be safe and healthy and have their needs met.  Since he died, my step mom has been trying to get them out of their house and take their money.  Now that I saw how they are living as hoarders (y’know those real life TV hoarder shows, ya, my cousins could be on that show) plus the filth under the hoard.  Plus they don’t bathe or wash their hair.  And the need assistance to get in and out of the house and in and out of the car.  So they need help if they are to stay in their home. They think if they accept help, they would spend down their estate/savings (which is true, but then they would be eligible for medicaid and would have every service covered).  They also think if anyone sees how they live, they will be forced to leave their home, but that is only true if they are found by a doctor or judge to be incompetent.  They are certainly not that.  So, step mom has made me the scape goat and has convinced my cousins that if they speak with me, they will lose everything and that I hate them.  I still have power of attorney, durable, for healthcare, because the only way that can be revoked is if my cousins themselves tell a healthcare provider that provides any service for them that they do not want me as their poa any longer.  They can also put that in a short note in writing.  Or, they can have it witnessed by 2 competent people or by a notary.  But my co-POA, my step mom, cannot just go around saying I am no longer POA just on her sayso, without any statement from any healthcare provider of my cousins or a written notice of it properly recognized by the state.  But still, step mom is doing just that, and is just going around announcing that she has removed me as POA, or that the cousins have, but there is no proof that the cousins have done any such thing.  Therefore, until proper recognized written notice is provided or until one of their healthcare providers says the cousins told them these wishes, I am still POA, no matter what step mom says.  But the hard part is proving it, and in engaging in and staying through to the end and winning this battle.  Just the thought of having to engage in this battle is epically depleting.  I don’t know if I can even see it through if I engage fully in it.  Especially with all the above stuff already weighing on me and being immediately pressing.   This really is the actual place they are at right now:   

Sorry.  Didn’t mean to whine.   Others have it worse.  I should think of all those in Ethiopia or wherever.  I am completely overwhelmed just in contemplating the oncoming battle over the cousins…don’t think I have the stamina to see it through or win either one.  This was really just meant to be a list that I could refer to to see what all I am dealing with daily because it all gets jumbled up in my head and I get so stressed and anxious and short tempered when it all gets tangled up and I can’t find room to think or breathe and at least in this list it is all laid out so I can keep each thread separate and at the very least know what is on my plate, even if I don’t want any of it, or know where to start or what to do with any of it.

 

 

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.  

 

Everythings OK Now, Really

So, okay.  I’ve been bitchin and moanin, and not doing anything to change it.  And I can now–do something that is.  For a long time, I was unable to do anything, but thanks to my great therapist A, I actually can change how I see things and how I respond to them.  And I also realized that my biggest trouble, the reason behind my triggers, is that I interpret things around me as a child would, and my behavior is based on that perception.  So, now, I see that I can start to understand things around me from an adult point of view instead, and that then, my behaviors will change.  And that doing this will free me from my triggers, my trauma.

This in a way goes along with my post on being a Sheep.  But while that post was bitter and hurt, I am now looking at  it not as a child, but an adult.  So, I am not being forced or coerced to be a sheep.  Instead, I am going to allow medical docs’ recommendations to not only be heard, but to be applied. So, if my doc thinks it is a better thing to change meds, I will give it a shot instead of becoming adversarial about it.  And if they think going to recreational groups and some therapeutic groups would be good for me, I am going to give it the old college try.  They may still be mistaken, but I will at least find out instead of being a child in a tantrum, denying anyone else can have anything useful to offer.

So, I am going to start going to at least one group at my clinic a week.  And I am going to allow them to guide me to different meds.  And I am going to lose all the weight I have gained when I started on lithium 6 yrs ago.  Maybe it will all be for naught after all, but maybe something will be helpful. But continuing on as a child will never change anything, so I have to start somewhere.

I have to say, I am excited and scared to death to start this part of my journey.  There are no parts of me, or my experience, or my knowledge that has any clue about how to be an adult.  What do ‘adults’ think like?  What do they see?  How do they interpret?  What is it like to be an adult in one’s own life?  But in the past, I’ve always winged it when encountering something new, and all of me always figured it out, sooner or later.  So, I guess that’s just what we’ll do now.

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

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….

Of Course I’m Fat! And of Course It’s Because I’m Crazy!

So, long story short.  Because I take lithium, my body holds it and stupidly gets rid of the real salt.  That makes my potassium go super high.  So to keep the potassium down, i have to eat a low potassium diet and keep my lithium stable and see nephrologist to make sure it all stays in balance.

So, two weeks ago, my feet swelled up quite a lot, at least 3+ non pitting.  Even going up above my ankles.  So I finally got to see the nephro today and show him my ankles.  I asked what it could be from, if I needed tests to find out.  He said to me well, according to your chart, a year ago you were 22lbs lighter.  So, the reason you’re ankles and feet are swollen so much is because you are overweight and your body can’t keep up with it.  What you really need to do is go home, cut down on the carbs, the salt, the calories and the potassium–then start exercising.

I got a little tetchy at this point and queitly said through clenched teeth, are you telling me you are not going to run any tests or try any drugs to attempt to treat my huge feet?  Because I am fat, and so, that means there’s nothing wrong with me having hugely swollen feet?  to which he very nicely and roundaboutly basically said, yes.

At which point my amount of tetchyness dissolved immediately into a full waterworks with tears dripping down my face, and me trying to hold in my sobs and not make any (unseemly) noise.  To which he responded by saying, well, you are certainly labile today.  I can’t understand why that would be.  I don’t see why you are so upset, you gained the weight.  I think this appointment will be the last we’ll have.

To which I said, I’m upset because my feet are grossly swollen and have been for over 2 weeks, and regardless of how much I weigh, they still need to treated because this is not normal.  And I am scared, and frustrated, and don’t want to get sicker or have more problems, and I want you to help figure out what’s wrong and fix it, and I’m not getting that are going to do that.  Granted, it didn’t really come out like that though.  I was still trying to hold in my bawling, sniffling and leaking eyes.

He left the room and then came back and said you can go now, we’re done.  So I went to my car and cried for 10 minutes before I could see to drive. I tried holding back the rest of the tears until I got home, when I realized I wasn’t 100% sure he was going to still follow me after what he said in the exam room.  I finally got connected to the office, and I asked if he was still intending to follow me.  She asked why would I think that he wouldn’t–so I said because he said so.  She left and returned, telling me I must be mistaken, because she just asked him and he said Oh, she must have misunderstood me!  Of course I am following her, AND, I am sending her to have her legs examined for valve prolapse/vericose veins AND I am cautiously starting her on diuretics AND I want to see her in 6 weeks.

So, my 41 y/o feet are a large amount swollen, and the reason is “I’m fat”..and there is nothing else to be done about it.  And when I cry because all my fears, frustrations and have just been summarily dismissed as ‘nothing/nothing important’ and then my emotions are dismissed as occurring only due to my being diagnosed with bipolar disorder.  If any other person without a known mental illness had been there, he would never have assumed their raw emotions were just a symptom of their mental illness.  He would assume they were valid emotions.  He would assume they were worried, scared, afraid of having a serious problem.  He would have offered them the available possible causes and treatments.  He would not threaten them with not seeing them again.  He would definitely not have discounted their experience of the situation or their fears and concerns.

So my advice to you is DONT GET FAT.  DONT GET SWOLLEN FEET.  DONT SHOW/HAVE EMOTIONS or the doctor won’t take you seriously. They will dismiss your complaints, your symptoms, and any information or emotion you share, as being only due to your mental illness.  They do not think you are credible and will discount everything.

I am going to find a way to have someone accompany me to all my appointments from now on, to act on my behalf as both a witness, someone who can keep track of what has been said and done by me and by the doctor.  Someone who won’t let me be discounted  and unvalidated but will call the doctor on it.  Someone that if I start to cry or get tetchy will smooth things over so things don’t get carried away.  I’ve thought about doing this for a long time, but I was managing to get through each appointment as it came, so I never went any further than thinking.  Now I’m really gonna do it.

I have to go now.  my leg is numb up to my hip, and foot is tingling so strong I can’t stand it.  But it’s ok, I’m just fat.  I’ll just go lose some weight right now.