Agony

I am in SO MUCH PAIN.  Erythema Multiforme is pure torture.  I am essentially being burned from the inside out and will lose the skin on my arms, thighs, and entire back.  I think my upper chest will be spared, but that remains to be seen.  Every moment is an eternity.  There is no possible way to get comfortable.  I've tried.

My entire body is affected - from the tips of my toes to my jaw - and my ears.  I'm in shock most of the time because it is so overwhelming.  There is absolutely nothing to do but wait it out and hope that it does not get worse....but it will.  Even though I stopped taking the Lamictal two days ago, it will continue to poison my system for the next 6 +/- days.  I am unable to leave the house because I scare people.  My body is on fire (102.9 at last check) so if the sun hits me ... I'll just go ahead and avoid finding out how that feels.   

Erythema Multiforme /Lamictal Rash

I've made the decision to stop all treatment for bipolar, etc.  The treatment has been much worse than the actual disorders.  As I've said in previous posts, I've managed to stay alive for 40+ years - it was touch and go there for a bit with 2 suicide attempts - but I can figure out the next 40 years and look for help when required.  This current situation may very well kill me if it spreads to my internal organs.  Now is the time to bow out and admit that some people will not find a pharmaceutical answer to their problems.

Odd, really.  I begged to die for so long and now, when faced with this challenge, all I want to do is to make it through this and live - mostly because this is a slow and tortuous way to go.        

Erythema Multiforme

Waving the white flag

The dreaded "Lamictal Rash" (Erythema Multiforme) sent me to the ER this morning since my primary care physician and psychiatrist were too busy referring me to each other in a not-so-amusing game of hot potato.

The ER doctor was not impressed with the absence of care in my case. 

I am on high dose prednisone for a couple of weeks and face a solid month of recovery.  All from 25 mgs of off-label use of a simple little anticonvulsant.  Go me.

I am in extreme pain, nauseous, dizzy, and my lymph nodes are swollen so the stiff neck is an added bonus.

I just put in my order for a medicinal banana split, with extra strawberries.

I'm done.

The dreaded "Lamictal Rash" appeared last night, along with a very stiff and painful neck.  Lamictal was my last, best chance at an acceptable maintenance medication so this is a big disappointment.  I placed calls first thing this morning to my primary care physician and psychiatrist explaining the situation, as I was instructed to do if this should ever happen.



*crickets* for several hours.



I finally heard back from my primary care physician's nurse, who said that I should direct my issues to the prescribing doctor.  I explained (again) that the prescribing doctor is in fact a psychiatrist who had instructed me to contact my primary care physician if any adverse reactions (rash) occur with Lamictal.  Psychiatrists have offices with velvet divans.  They do not have exam tables and paper gowns.  (sarcasm)  The nurse asked if I was able to breathe.  Really?  Of course I can breathe; I'm talking, right?

I was once again told to contact the psychiatrist/prescribing doctor with my issue. 

I did.

Again.

No answer.

When (IF) the psychiatrist calls he will say that I should be seen by my medical doctor to determine if I am having an allergic reaction to the medication, or he will send me to the emergency room. 

Ah, the emergency room.  If I go there I will wait hours upon hours.  They will take a look at my rash and then refer me to the two doctors who are throwing me back and forth like a hot potato.

So this is what the bottom of the crack looks like after you fall through.  Interesting.

Here is the plan:  I no longer have Bipolar I, Anxiety/Panic disorder, PTSD, ADD, OCD, Dermatillomania, etc. - I have been cured.  Isn't that wonderful?!  I have to stop taking the medicine because I truly am on my own and if I take another dose and the rash REALLY takes off....then what?  Who's going to treat me?   

I am sick and fucking tired of being treated like an idiot because I carry these labels.  I am intelligent, underserved, overcharged, and, at times, harmed by my medical team.  I've had to fire people, hire others, and beg for treatment, only to be denied assistance when things go wrong.

The health care system in this country is bullshit.  I'm done.  I'm cured.  There is nothing wrong with me at all.  I'm sending the FUCK YOU flag up the pole.  I navigated this alone for 40+ years, I can do the rest of it in the exact same way.  Should be loads of fun.

*mic drop* 


UPDATE at 4:20 p.m.  Psychiatrist called.  He said that my PCP should have fit me in, but it doesn't matter because the Lamictal is done.  Once I described the increasing nature of the rash and stiff neck he said that I should stop taking it immediately.  We are back to square one.

Inside out

I’m scattered about today. Everything is misspelled and difficult to write and my mind is racing. My mind is racing but unable to be still and make a decision. My handwriting is a mess to the instructor but I can read it. I cry in the parking lot on the phone with my husband. It’s too much – I’ve lost the ability to understand – I glaze over and miss key points. He comforts me but not really; his words are a tinny echo.

I talk too much – too fast – take up the workshop time. I ask “good questions” but am distracted and distracting. People stare. What do they see? Me, fat? Me, unsure? Me?

For some odd reason confused people ask me questions, assuming that I would know the answer, be able to answer, have the answer … do I appear ok to you? Trust yourself because I am not to be trusted.

I do not have the energy to get up to get my medicine in the cabinet. I am too tired to ask someone else to get it. I do not want to make the noise necessary to ask. I hate the sounds of chewing and talking and television and, jesus fucking christ, stop the useless babble! What you’re saying means nothing at all right now. What problem are you solving with your discussion? What good is it? Why bother?

I like silence. I would prefer quiet. However my mind is most unquiet and the world is deafening.

Every cell is shaking. I hold myself in static positions. Why? From fear? Of what? My husband keeps swaying his knee. The dog pounces on her toy and walks by my chair. WHY do people and animals just move about like this? It’s wasted energy. You must have a purpose for what you do. I click my teeth when I read and count – for every beat.

I just want to breathe, all by myself. I am the brain of the house – isn’t that frightening? It’s exhausting – I get tired. I have a hard time sleeping because once I start the brain wheel it spins and spins and reaches breakneck speed. You do not stop something like that all at once…or at all. It just burns out. The stops are very dark. The stops are very dark when you alone hold the key to the starts. I have a malfunctioning brain at the helm of a confused and abused body; certainly the most useless thing of all.

Alone for a few moments. I asked for this and am so thankful for the break from the noise. No typing now … it is time to bring it down. Just me, the wind in the trees, the chimes, and the dog.

Right hand on my chest, and the breath.

Choose.

Pick a card - any card. 

BUT WAIT - before you pick a card you should know that all of the available cards contain shitty situations.  These situations will require effort on your part to improve them; to mold them into something that you can live with.  You should also know that in order to change your current situation, you must pick one of these cards; life is what unfolds based on the choices you make along the way. 

How do you choose?  Will you choose to avoid the game altogether and thereby check out of life?  Avoid the risk?  Deny yourself the chance to turn a shitty situation into something slighty better than death ...possibly wonderful ....perhaps delightful?  This is your chance.  Pick a card.  What do you do?

I have an entire deck of shitty choices in front of me right now.  I left my old life behind when I crashed - the money, colleagues, social circles - all gone and forever altered.  If you leave the game people rarely hold your hand as you exit. 

A choice must be made.  This choice will change the course of my life and require a great deal of effort on my part.  Do I have the strength?  Probably not, but I'll have to find it anyway.  Any move you make requires at least some forward momentum, no matter how slight.

Do I choose to barely make it and live as a victim to my diagnoses?

I have been advised by my doctors and therapist that my old career is over - I will not be able to work in such a high-stress environment ever again.  If I choose disability, I choose a life of abject poverty - of trying to live on $1,000 a month. 

Do I choose to ignore my diagnoses and try to join the old game?

I could ignore the advice of my doctors and therapist and push it all down - like I used to do - and head back out to the playground.  It hasn't been that long - I could do it.  How long before I lose it all again, and will I survive the next fall?

Do I choose to take a new, risky road? 

I could choose to do something that I've never done before, but that takes a great deal of effort and a solid commitment to see things through.  I'd be pulling up my own bootstraps during the weakest time of my life.  If I fail, I fail hard and without a net
. 
Do I choose to take a few steps back and accept something less than what I had before?

I could choose to take a job with less stress, money, responsibility  ... everything - something slightly better than poverty and mind-numbingly boring. 


The one thing that all of these choices have in common is that they require me to push back against my illnesses, and that is what lead to this current crisis.  I have no idea what to do.  At this point I feel that I should start small and work my way back.  Unfortunately, the world does not wait for the weakest of the herd and I will likely never make it back.

Ladies and Gentlemen:  Allow me to introduce you to just some of the challenges facing individuals suffering from any sort of illness.  The choices are never easy, but if you want to LIVE you must CHOOSE. 

Rainy days and Mondays

Contrary to the next line of that song, this rainy Monday did not get me down.  Today was a good day for me.  I had a few issues during a focus group discussion this evening with two people that I shall refer to as the "chip cruncher" and "snot sucker", but other than that - things went well.  The chip cruncher and snot sucker lived to leave the room, and I did not even bother to choke them in my mind.

No issues. 

I have to start testing myself now - progressively adding additional goals and expanding my ability to live a full and productive life.

I've lost 6.2 pounds in the last three days, so the weight appears to be coming off almost as fast as it went on with the Lithium and Risperidone.  I look rested - not crazed.  

I'm hopeful.  I want this positive flow to continue. 

Holding on for dear life

In terms of severity of symptoms, this was a good day.  My sleep has improved and I think that has allowed my brain some time to rewire a few of the broken bits. 

I had breakfast (really enjoying coffee again), took a walk around the river with my son, and fueled my body with healthy food.  I'm down 5 pounds as of this morning.  I have a tremendous amount of work to do to reverse the significant weight gain caused by Lithium and Risperidone, but progress has buoyed my commitment to carry on.

Several people have noticed "a difference" in my speech and moods.  The depression is just under the surface and I work very hard to keep it at bay.  I can actually feel it creeping in and hold on for dear life to fight against it.  At this point it helps to stop the fall if I engage in some sort of mental exercise, but it's a constant battle.  I do not want the fear of falling to get worse than the actual fall, and hope that the increasing dosages of Lamictal will be the answer.  We have a lot riding on this damn drug.

That said, in the last two days I have gone from suicidal to so manic that I had altercations with two separate strangers (men) in less than 24 hours.  It was very dangerous behavior and I was lucky.  We are not there yet.  It's frightening.  I stay home most days because I never know how I will act or react in any given situation.  It's best to reduce the chances of legal or physical harm, so I stay home unless someone is available (and willing) to accompany me and swiftly deal with any issues. 

I am a liability and as a result require near constant supervision, and that breaks my heart.

Come Josephine in my Flying Machine

"Oh! Say! Let us fly, dear
Where, kid? To the sky, dear
Oh you flying machine
Jump in, Miss Josephine
Ship ahoy! Oh joy, what a feeling
We'll go through the ceiling
Ho, High, Hoopla we fly
To the sky so high

Come Josephine in my flying machine
Going up she goes! Up she goes!
Balance yourself like a bird on a beam
In the air she goes! There she goes!
Up, up, a little bit higher
Oh! My! The moon is on fire
Come Josephine in my flying machine
Going up, all on, Goodbye!

One, two, now we're off, dear
Oh, you, pretty soft, dear
Whoa! say, don't hit the moon
Oh, no, not yet, but soon
You for me, Oh, gee! you're a fly kid
Not me! I'm a sky kid
Gee I'm up in the air
Above you for fair..."

Last night was bad.  It was another "Just let me go...I want to die...you would be better off without me...I drag this family down...I'm tired...no more...please, just let me go..."

This morning I woke refreshed, reset, level, and ready to work on my goal(s) for the day, even though I'd clearly set none the day before because I wasn't planning on living to see today.

Going up she goes...up she goes...

Today is better.  I am a couple of pounds lighter, don't feel like dying, and managed to shop for food and drive about the city without incident.  The swings are hard to manage, but I'm here.

Right now I'm here. 

Depression

Depression continues - very down.

One moment at a time. 

That's all I can manage today.

Who am I?

Therapy today.  We discussed the new doctor and mood stabilizer (Lamictal).  I’ve been depressed…very down.  All things stop when I am like this – even self care.  I had to shower today because an appointment means that I must leave the house and be with other people who know how to live – who have the ability to live life with others.  Since my daughter left for college (and even prior to that), I have not showered.  I’m guessing at least 5 days.  This is not uncommon for me (or others in my present condition).  I am told that this will improve as symptoms improve with therapeutic medication levels.    

I have a long way to go.  My therapist assures me that I will get there, but it takes time.  I’m running on blind faith here.

We discussed things to this point.  I had it all – if you can call what I was living all; high-pressure career, appreciative clients, respect of my colleagues, all of which consumed my life for the last thirteen years; there was no balance.  I had nothing left after 5:00 p.m. 

Employers love people like me.  Our ultra-perfectionist nature is rewarded with ever-increasing work.  We are the all-too-willing community teat for the rest of the fucking slackers.  My therapist said (again) that she is shocked I made it as long as I did in that position/condition.  The unfortunate thing about employees like me is that we burn out in epic fashion, leaving the employer with a bit of a mess to clean up in the aftermath.  How many people will it take to do my job?  Well, I took some time off once and five people had a hard time getting shit done.  Stupid business practice, but I was a willing participant - always ready to please and please and please the unpleasable machine. 

We discussed my OCD, specifically my obsessive planning.  Some people can just go to the beach and enjoy.  I begin three days prior to that beach trip thinking about (in exhaustive detail) what to pack, food (recipes), parking, various routes to the location, cost, gas, how many people, does everyone have a towel, do we need extra sunscreen, what about the dog…packing the car two days before, gassing it up, first aid kit…

I said that I envy people who can just grab a towel and go – without a care – and enjoy the day.  I suck the joy from everything before we even get there.  I do that with everything in my life.  Everything.  I just clicked my teeth for every word written on this page.  I will make sure that the windows are up in my car eight times before I exit.  Everything I do is obsessively and compulsively regimented.  Everything. 

Once my moods have stabilized, we will begin to discuss me.  Who am I – really?  What makes me happy?  What do I like to do?  I've discussed this before; I do not have the answers to these questions – I never really did.  I was all work and that nearly killed me.  I’ve never asked myself these questions.  Why bother?  I was already dead.

My homework is to set a single goal each day and follow through.  Today, I showered.  Perhaps I will do something else.  I will note these accomplishments and do the same the next day.  If I fail to accomplish my goal(s), I am to focus on what went right, NOT obsess over what went wrong.  I have to learn that the "to do" list never ends.  I will never finish it.  Deadlines aside (another discussion) it is ok to leave things for the next day.  When the list is finished, you are finished.  That is life. 

My response to this homework assignment was a deep, tearful breath.  It’s like starting over from infancy with crawling, speaking, walking … and so on.  I crashed.  This is the bottom.

It is a long goddamn climb back to uncertain territory.  Will the view from the top be the horror that I remember?  I am not accustomed to not knowing how things will progress, so this work is particularly painful for me.

My car needs gas.  I haven’t pumped gas in weeks.  The last time I tried to pump my own gas I kicked the ever-loving dog shit out of the gas pump (and injured myself) in a manic fit of rage.  I have set a goal to gas up the car, by myself, again today and see how it goes.

Right now. 

    

Darkness

D A R K N E S S

Periphery of shadows

Overtaking, suffocating

Obstacles wound

Deflating, soul grating

Farewell momentum

lost my way

Flailing through gloaming

Combating the gray

Here to crash

Silently slip away

Spare loved the pain

Another tormenting day

- tmr/j (06/20/12)

Fresh starts, sputters, and stops

My daughter left for college.  The time leading up to her departure (and for a good twelve hours following) were the hardest moments of my life.  I cried nonstop for 28 hours - gut wrenching, ugly-faced, full-body-involvement sobs, wails, screams - and some stifled moments when I was in her presence.  At one point my husband begged me to take valium to ease the pain, and I agreed.  It helped, but not enough to stop the grief of saying goodbye to my only daughter - my youngest child.

I probably needed a good cry.  I rarely cry.  It's not in my nature to let go like that.  Eventually I gave up - utterly exhausted - and drifted off to sleep with my husband holding me tight.

I woke the next morning (my daughter about 5 hours into her 16 hour drive) feeling spent and ready for the next step - finally meeting my new doctor for meds discussions.  No more Lithium and Risperidone.

Driving to the city is always very stressful for me, but I managed.  I arrived early, scoped out the place, decided on parking, went up to the office to double check the appointment time (a bit of OCD was showing under my hoop skirts there), and went for a quick lunch salad.  After lunch I arrived early (of course) for the scheduled appointment.

It's always hard to start fresh with someone new.  Its hard to tell your story AGAIN.  I tell it so often that I wonder if I should just write it down and provide a written copy ahead of time for new people - just to save a half hour and most of my sanity.  It's hard to tell The Story; it drains what little reserve you have in the tank. 

The doctor is only there for med management and accepted the prior diagnoses without question.  He prescribed Lamictal (what my therapist wanted me on from the start) and I took my first dose that evening.  I have several issues that require medication (he said I will likely be on 4 total), but suggested that we start with one med at a time and add others on as we go - just to be sure that we know what to blame in the event of any sort of allergic reaction.

 Fresh start.

I woke this morning feeling relaxed and loose - not much in the way of pain or worry.  I spent most of the day like that and then at around 5:30 this evening, the shadows crept in; slowly at first and then all at once.  They (the feelings of doom) are very much like shadows in the corners of my vision, taking over my body...surrounding me...suffocating me...and eventually taking over completely.  They fill the room. 



The depressive side of bipolar disorder is a very dark place, and I hate being there.

  
I am very impatient and waiting for this fresh start to make a difference - over the course of many, many weeks AGAIN - will be difficult for me.  I just want to be better now.

Then again, what is better?  I don't have a clue.  We have to find out what normal is for me, because I honestly have no idea what normal is; I have nothing to draw from for normal.

Now we wait.  We have to titrate up slowly with the Lamictal to therapeutic levels to avoid any potential adverse reactions, the most serious of which is a skin rash which, in some cases, is fatal.  http://www.lamictal.com/    

Meanwhile, I have to stay out of my daughter's room for a bit, and have plans to keep busy with other things until I am ready to clean that out.  It is hard to say goodbye.  It's hard to give her up to her own life, especially now.

Goodbye for now

I don't know which end is up.  My daughter leaves for college today and I am, to say the very least, a bloody mess.  It has taken much in the way of sobbing, bawling, uncontrollable scratching, shaking, a couple shots of Valium, and little wounded noises bursting forth from my soul to come to a place where I can say that this is good.  I raised her to do this - to go forth and start her life.  To be independent.  To use her talents to help others.  She has accomplished so much and come so far in her life.  This is the ultimate goal of parenting.  Unfortunately, no one prepares you for the intense pain that comes along with saying goodbye.  If I had been well enough I would have done more with her.  We would have spent time together - doing things. 

Time is over.  There is no time.  Time will now be spent loading a vehicle for the trip to college and checking for last-minute things.  No doubt we will forget some things.  No doubt I will lose my fucking mind when I enter her bedroom to clean and stage it for selling our home. 

No doubt.  That is the day that I will remove all evidence that she existed in this house (potential buyers demand a near clear slate).  The hard days will continue.

I am frozen in place - unable to move.  If I move time will move, right?  If I move events will happen faster.  I do not want that.  Time, after the brain, is our most valuable asset.  I am out of both.
  
The fact that I suffer from mental and physical illnesses makes this harder.  I'll admit that.  I know some parents who are excited to let their children go.  I cannot imagine being like that.  That requires a selfish side that I do not possess.  I do not live through my children, but my life has been spent caring for my children - to the best of my ability.  I did a good job, and took that job seriously.  I hope I did a good job.  They are wonderful.  Now is the time that I have been dreading.  How did it get here so fast?

Time.

I have things to do and everything is so much harder for me these days.  The pressure from others who do not understand how difficult even the simple tasks can be is tough to manage, but we go on and do. 

I'm off to go on and do. 

PEACE. 

Make way for the secluded island of misfit minds

dig·ni·ty  [dig-ni-tee]

noun, plural - dig-ni-ties.

1. bearing, conduct, or speech indicative of self-respect or appreciation of the formality or gravity of an occasion or situation.

pri·va·cy [pri-va-cee]

noun

1. The quality or condition of being secluded from the presence or view of others.

2. The state of being free from unsanctioned intrusion: a person's right to privacy.

3. The state of being concealed; secrecy.

I learned a very important lesson in this process.  If you want to keep your dignity and have things remain private ... forget it.  Nothing is ever private.  In spite of your very best efforts, someone tells another and yet another embellishes the story and a few more add to the telephone game and then ... then you're sunk.  When the game makes its way back to you, and when potential employers get wind of your "mental illness", you're cooked.  The only answer is to pick up your hoop skirts and leave town with your head locked in a barrel.  Head for the hills, sister.  Make way for the secluded island of misfit minds.

Fair?  Fuck no. 

In my next life I choose to avoid mental illness.  However, if I must have mental illness, I also choose global deaf-muteness.

 

Down the rabbit hole

I have reduced my psych medications to zero as if this evening.  In doing so, I have increased my mania ten-fold.  I should be hospitalized right now.  I am relying on Valium to get me through at this point.  Valium and avoidance.  I keep away from others to keep them safe from my razor tongue.  The shit that I say doesn't even make sense but I am tearing this family apart with every slice. 

I will burn it all down if I allow myself to think about it for very long.  I'm in here - deep in here - and it HURTS to be me.

I have lost so much, all at once, that I have no idea which end is up and the losses continue.  My only daughter will turn 18 in another state, away from me, just as she turned 16 in another state - without me.  It is probably for the best because I have been most unkind to her and I DO NOT MEAN TO DO IT, but there is that damn razor tongue again.  The little bits of buried me are powerless to the force that is mania. 

It's bad.  The medication was bad.  This is bad.  It's all bad.

Monday - new doctor - please hurry.   

 

Jeeeeeeeeeeeeeeeeesus

Mania.  This is it.  Bloody screaming, crazy, out-of-control, shaking, running, speaking very fast, racing thoughts, see a knife, cleaning the counter, yelling, spitting, stomping, throwing, breaking, slamming doors, insulting, warning, yelling to others to go away and not witness....no, really - go away and do not watch this. 

Really.

Valium down the hatch.  Safe in a room under a blanket.  Trembling.  It will pass.  Very soon.

EXHAUSTION

I have never experienced an exhaustion so complete and all-consuming as the one I am in right now. I would describe it, but I am so, so, so tired.  I told my husband that I should be in a hospital.  Instead, I am resting, drinking plenty of water (if I can), and eating healthy. 

I spent the night hallucinating.  Every single second of the evening, overnight and early morning hours (awake or asleep), I saw odd things - things that definitely were not there.  I am reducing my meds to zero in preparation for changing them next week.  My choice because I know that they will be changed and know that I want this fucking poison out of my body.  Immediately.  I want the weight to start falling off.

I am angry.  Angry that someone would ignore my pleas regarding the ill effects of an ancient medication and continue to up the dosages.  I am angry that someone would send me to a place with criminals for intensive treatment.  I am angry that someone would care so little about solving the puzzle that is my health.  That is the job - solving the puzzle.  You don't have to like me, but you DO have to be invested in solving the problems -THAT is why I paid your fucking amateur ass $1,000 an hour.

Bitch.

It is time to rest my head.  Monday - and my appointment with an ACTUAL DOCTOR - can't get here soon enough.

UPDATE @ 4:35 p.m.:  My head has been POUNDING all day long and nothing touches it.  The only thing I want is fresh air and a place to rest my head.  Food?  Fuck no - I'll puke. 

I haven't had the energy or desire to shower since Friday.  I don't remember when I last brushed my teeth.  If I even attempt to do either one right now I will vomit.  If I had a shower chair - perhaps - but the act of standing under pelting water makes me ill.  Toothbrush and toothpaste in the mouth is an automatic boot. 

One thing is clear, the medication, while old and goddamn sucky, was doing something.  I have been VERY manic today, in spite of the headache.  Irritability is off the charts.  I am unable to do anything but be a bitch, hold my head, and allow my heart to beat. 

Off to bed.  Again.

Aftermath

Yesterday was rough. Very rough. I am still in a state of shock. I met with my therapist today and she apologized a hundred times - had no idea that the program I entered yesterday lumped criminals and addicts together with people like me.  It was not her decision to put me there so I gave her a pass.  The rest - fired.  Done.  My therapist agrees and understands.

I'm ok.  My therapist said that I disassociate when faced with very difficult situations.  I kept it easy today - no challenges, no triggers.  I also have a private psychiatrist and will see him on Monday.  I reviewed his available resources and they impress me.  He seems to be just what I am looking for - a partner in my care. 

I have been physically ill today (dealing with other health issues at this time), but took a nap and that helped a great deal.

Not much to report today.  Yesterday was so traumatic that my brain is just too tired to function right now. 

Cluster fuck

I went to the hospital and left 45 minutes later. It was every horror you could possibly imagine and then some. Lock down, in with drug addicts trying to escape jail time, alcoholics, thieves, etc. I was told to be there at 11:00.  I arrived early, of course, with all of my things ready.  I had my healthy lunch, a snack, plenty of water - that's what I do, you know?  I am prepared for everything.  After waiting 30 minutes I asked why I was there and what was coming next, only to be told, "Sorry - your person did not show up today - you can wait or come back at 1:00."

I had vitals taken out in the open in front of others.   I asked to be in a private spot for such personal matters and they refused.  I had to take a drug test in front of someone else (I'm bipolar, not an addict). I had to take a fucking Breathalyzer test! In front of other addicts!

Listen, I'm not knocking people, but I did not belong there.  I did not belong there. 

Openly crying at this point, a recently relapsed heroin addict (I know this because that is how she introduced herself) walked over to me and said that I should leave my pretty rings at home and keep my purse on my arm...."we're all a bunch of addicts and stuff goes missing here."  She was trying to be helpful. 

I left.  I don't know how I managed, but I walked to my car, opened the door, closed the door, locked the door 8 times, then started to scream.  I screamed for a solid three minutes.  I then picked up my phone and fired everyone who said that I should go to that mixed company hell-on-Earth cluster fuck.  It was the most unhealthy thing for me at this time. I am in fucking shock, exhausted, shaking, sick.

My therapist (the only person to survive the mass firing) is taking care of the referral I need to obtain a private doctor to help me with my meds.  As of this moment I am no longer taking the Lithium and risperidone.  My choice.  I don't care.  Gaining 45 pounds in 5 weeks is BULLSHIT and not good for anyone.

I am resting now - that is all I am able to do.  This was one of the worst days of my life, and I've had some seriously bad mufuckin' days.

I can't.

It's like driving yourself to your own beheading.  Who would do that?  What kind of brave fuck would do that?

Me.

Intensive Care

I don't want to go to the hospital tomorrow.

I am afraid.

I no longer wish to take this medicine.

I am so tired.

I want my old life back.  It sucked, but it was something.  This is a whole lot of nothing.

I am losing the ability to do the things I love.  I am losing the ability to love.

I am falling apart.

I'm right, as always

I took half of my Risperidone, something that she wanted to wean me off of anyway, and half of the Lithium, but all at once as she - the stupid psych nurse with an ENTIRE YEAR of experience - instructed.  Result?  I did not stand there and piss myself with my body on fire and my organs wanting to crawl out of their ugly skin suit.  I felt sort of sleepy, and I slept.

Oh my gosh , ain't that a trip?

No one died, least of all me, and I did not experience the expected horrific side effects of moving up TOO GODDAMN FAST, DUMBASS. 

Tomorrow begins at least 30 days of partial/outpatient (hopefully) hospitalization; I am at the hospital for the majority of the day, but am allowed to go home in the evening.  I have other health problems that require immediate attention, but apparently this comes first.

Are you fucking kidding me?!

To prove a point to my stupid (self-proclaimed genius) psych nurse, who claims that it is my eating that has caused this now FORTY FIVE POUND weight gain (fucking moron, I have only lost or maintained since 2007 and my eating has not changed), I 've had almost no food in two days.  What has this given me?  A total gain of 8 pounds.  Eight fucking pounds.  OH and when I took all my meds at once as prescribed last night?  I pissed my pants right where I stood.

I am starving, exhausted, can't make it to the bathroom in time to piss, can't reach my own ass to wipe myself, my entire body is screaming in pain, and I have gained 8 pounds in two days. 

What I want to do is stop the meds immediately.  They are known "weight gainers".  Still, I know that if I do that, it will be even worse in the form of probable death, because that was where I was headed before the meds.  By my own hands.

I'm going to a show this evening.  Whatever the dress code is at the theatre -- makes no difference.  I'm wearing a fucking second hand skort from goodwill and something that looks like fish scales to cover up what looks like a triplet pregnancy.  When I lift my hands even my long shirts show my belly.

OHMYGODIJUSTWANTTOFUCKINGSCREAMANDDIERIGHTNOW!!!

I don't care about anything anymore.  Meds to keep me alive that make me want to die.  I just don't know.  I don't know.

'isms

(On gaining 41 pounds in the blink of a Lithium/Risperidone eye):


"Yeah, well....sanity doesn't really matter if you can't stretch your arms around to wipe your own ass, now does it?"

 

Crawling

The bitch psych nurse upped my lithium even though I told her that it was NOT WORKING.  "You have not reached a therapeutic level," she said.  FUCK YOU.  I'm taking almost 2000 mgs now, all at once, all at bedtime, along with other antipsychotics.  My body wants to turn inside out.  I feel like absolute shit.

Everything is crawling.  Everthing hurts.  I feel wretched.  There are no words.

She made a point of telling me that she has been able to prescribe medicine for a year - like it was 25 years.  I laughed in her face.  What a self-absorbed bitch.  I told her it's not working.  She has a duty to find something else. 

And so it begins ... losing control of my life.

I start intensive care on Monday.  That will remove this bitch from the equation and put real doctors on the case.  I hope that they can figure this shit out because I am ready to take a nap on the tracks. 

-EXTREME-

This is written at the top of every page from my psych nurse:  Bipolar I Extreme w/o Psychosis, though a few times there was psychosis and those were dark times indeed. 

I look at that and wonder what the fuck happened.  How did I get here?  How did this happen?  What fucking worm worked its way into my head and jumbled things about in such an EXTREME way that I can hardly manage the basics for daily living -- like self care? 

I have learned one thing - how to manipulate things (probaby not, but allow me this one indulgence).  If I say that I want to die - that sounds the alarms.  If I say that I want to hurt people, that sounds the alarms.  If I THINK those things but stop short of SHARING those things, all is well with the psych people.

Maybe.  Is it?  I don't know.  Perhaps they are smarter than I give them credit for, the fuckers.

Quite simply, I want my brain back in one piece, and I don't want to get lost on a ward forever.  I want things to work.  I want to be brilliant.  I realize now that much of my brilliance was probably a result of mania....and we are planning on losing that.  It's a shame because mania - controlled - is responsible for some of the most amazing things that humans have thought, written, acted, created...

I wouldn't wish this on my worst enemy.

Learning how to let it go

There isn't much to share today.  I set a goal to walk (waddle) a mile and did just that.  No fanfare needed.

I had a few issues that upset me, but worked my way through them and that was that. 

I have an appointment with the hated psych nurse in the morning, and also with the billing department for the Intensive Outpatient Program.  They will give me a tour of the facility at that time. 

I am scared.  Scared was the word of the day today but in the end I had to let it go.  I realized that it did no good to hold on to it.  Scared, scared, scared, scared....is this doing anything?  No. 

I learned to let it go - like that WOPR computer in WarGames.  I feverishly played the game of tic tac .. err... Scared until I finally realized that there was no possible winner, and then let it go.

  

I am not ok

I made the call to enter the intensive outpatient program at the local psych hospital.  It was difficult, but not as difficult as living inside of my own head - that place is full of pain.

I am not ok.  I am very down right now.  While I enjoyed my day and time on the coast this afternoon, the shadows moved in without my consent and have taken hold.  Every movement is a cut from a razor.  Every breath is a raging fire.  It hurts to speak, think, hear, type, sit up. 

It hurts.

My mental illnesses are going to take this poor family down.  We certainly weren't living high off the hog before (what a dreadful saying), but we did have a home, vehicles, jobs, support from family and friends - we had things.  Now I no longer have a job, unemployment will not happen (you have to be available to work), I am unemployable, entering the hospital for weeks and weeks, and somehow these bills that we barely paid before - with help - will still have to be paid without my paycheck.

HOW DO PEOPLE DO THIS?  HOW?

My husband is furiously working on this house - working against a deadline uncertain.  When will the money run out?  Will we make it that long?  Will the house be ready, show and sell before that moment when the song stops playing?

Will we be ready?  Able? 

I am not ok. 

The one thing I cling to is a statement made by a person who probably doesn't really give two shits about me - my therapist.  She said that it will be ok.  I keep saying that, but it's bullshit - how can we know?  We can't.  We don't.  We do not know. 

I am afraid to buy a bottle of water for fear that the $0.99 used to purchase that bottle of water may be necessary one of these days.  We've had those days over these last few years - not enough money for food or bills - but always paying the bills first because that is the right thing to do.

I am frozen in fear - unable to allow myself the luxury of taking a walk around the block because I should be at work right now.  I should be working.  Instead, someone else is sitting in my chair ... doing my work ... collecting my paycheck. 

I am not ok.    

Asking for help

Today I said the following to a dear friend and my therapist:  "Losing your greatest asset - your mind - is a scary thing."

It is scary.  It is frightening as hell to agree that you need help and submit to an intensive outpatient program or inpatient care.  How do I know that I won't be one of those crazy fucking whack jobs running through the ward halls with my ass hanging out, drooling, screaming...

How do I know?  My mind fails me all the time.  I no longer trust what is real.  What if I walk through those hospital doors and never exit?  What if I am lost forever?

My therapist assures me that things will get better and that I will be better and that I will get my life back.  I don't know what to believe.

Do you have any idea how brave one has to be to walk through the doors of a place and not know if you will ever exit?  I will - very soon.  I am scared to death. 

FACT.

I don't remember

I've been sitting here between moments of sheer terror, anger and despair, trying to think back to happy times; moments when there wasn't a care on my mind or in my heart.  Moments of pure joy...bliss...laughter...light.

I don't remember.

I remember (sad, bad, mad?) grandparents, naked and drunk.  I remember bad people at base housing.  I remember the word "NO" a lot from teachers when I first started out because I could already read and write and count and do so much more than the soft-headed spawn in the short chairs who ate paste and wrote in a some sort of retarded foreign language of lazy parents and hit or miss.  I remember packing boxes. 

I remember a record player and records that were different colors.  Some were yellow and one was even red.  That was pretty cool.  "Little Miss Stuck Up" was one of my favorite 45s.  I remember not being able to take a bath.  That sucked.

I remember Christmas being hard, but always having something.  That was bittersweet.  The joy always came with a price so joy was never joy. 

I remember church and God and the fall of men of God and then... no god. 

I remember family illness, wearing my grandmother's clothes, being teased, and skipping school.  I skipped a lot of school.  I didn't skip to play, I skipped to get away from the teasing and the eyes.  All those eyes - looking right through me.  Surely they saw that I had no idea how to be around them.

I remember protecting my sister - I always did that.  She was my job, and I took that job seriously.  I took that job seriously until she fired me a few years ago in the most painful way.  I will never recover from that.  Ever. 

I remember picking strawberries for money in the hot June sun.  I ate half of them so the money wasn't great, but ---- the moments at the lake after work, when I rode my bike to the point to swim and laugh and jump -- was that joy?  I think so. 

Things started to go wrong at about this time.  It was when I first remember engaging in neurotic excoriation and thinking about dying.  It was when I first started my attempts to solve things by walking ... solvitur ambulando ... and talking - to myself.

I remember abuse at the hands of others.  There isn't much to say about that.  I remember people coming and going - some good and some not - none of them really mattering one way or the other in my life.   

I don't remember much more after that.  Isn't that odd?  I remember only bits of pieces of a span of 40 odd years.  Was I ever happy?  Do I even know how to be? 

I don't remember.

Get on board or get the fuck off

I have no idea who I am anymore.  This person who gets painful rushes of adrenaline just getting up from a chair - has no strength to roll over in bed - hates strangers - frustrates and angers so easily ... this person who feels so fat, ugly, breathless and useless ... this person is foreign to me.

I want to be left alone while I deal with this.  Unfortunately, I have to perform each day.  A requirement of life is that you live it.  I have to find a job.  I have to deal with a psych nurse I hate and sit with a therapist I love, but who has reached the limit of what she can do for me.

With regard to my therapist:  she is wonderful, as I've said, but during our last meeting I asked her what came next ... where we went from here, and she did not have an answer.  I do not do well without a plan - that's just me - illness or no.  If you do not have a next step, you are not going to make it with me. 

The psych nurse is an asshole.  She is inappropriate and stupid.  She forces me to do things that I do not want to do, and threatens to do them without my consent if necessary.  I showed her self injury wounds that had healed and she grabbed my cell phone to call my husband to discuss blue papering me.  I explained that I had no desire to actually kill myself - self injury is rarely about that.  If I wanted to die I would not be at that appointment.  She asked me to share all and I did, only to have her grab MY phone?  Without asking?  I do not trust this person so she will never get the real me.  I plan on telling her just that tomorrow, along with my husband as he wants to be there as well to support me.  I also plan on telling her that I need someone else to manage my medication because she does not give two shits about my weight gain.  Thirty six pounds (it could very well be 40 today) IS NOT GOOD.  It must be dealt with.  Perhaps there is another health concern that has crept up.  Perhaps my thyroid is fucked up.  Dear nurse - do you not recall that thyroid issues were one of the things that we checked prior to Lithium therapy?  Don't you think we should check it again, given that it was borderline to begin with?!  WHY IN FUCK do I have to think about these things?  Isn't that why I am paying these professional people $500-$1,000 an hour?   

I need people to either get on board or get the fuck off.  I am paying the bills and make no apologies here.  I have silently lived with these torturous thoughts for most of my life, so don't expect me to sit back and take abuse after I've found the strength to ask for help...after I continue to display the bravery it takes to carry on down this road.  Either you're in or you're out.  I am not looking for someone to say what I want to hear or do what I want them to do, I am asking them to tell me the truth and do what is right for me.  If you are unable to do that - you're out.

UPDATE @ 11:30 a.m.:  I called my primary care physician to check the status of my thyroid and diabetes tests - both of which were normal.

NO idea what to do at this point.  I feel absolutely alone in my care.  This weight is not acceptable.  I will not go on living with this weight.         

I am angry

I am angry - all the time.  People piss me the fuck off.  The person behind me in the theater with her feet up on the seat next to me - in my face.  Fuck you.  I hate you.  I hate the way you open your candy and chew like a cow.

The people in the back row at the movie theater, laughing and making loud comments - I hate you.  Fuck you.  Shut the fuck up.  I paid money to watch this shit and I want to watch it in silence.

People using that strobe flash feature on their smart phones to find their stupid way in the dark theater during the movie - I hate you.  Fuck you.  I hope you trip and break your stupid, selfish faces.

The person who parked on the cart pad at the grocery store because he/she was too lazy to PARK and fucking WALK to the store like everyone else - the person who felt that parking and walking was for other people and not him/her - I hate you.  Fuck you.  Yes I kicked your car in.  Sorry about that.  I couldn't get around you without falling down or getting wet so I made room by making your car smaller.  It was a public service.

The bitch in the grocery store, chatting the clerk up when all I wanted was some pasta salad from the deli - fuck you.  YEAH.  FUCK YOU.  We go to the same therapist and I will gladly tell this to your wandering eyed face you stupid bitch.  No one gives a fuck that you are upset about some stupid personal thing with some other dumbass.  Move over.  I hate you.  THIS is why I told my stupid psych nurse that I will not join in on group therapy.  I will tell every motherfucker in that room to get fucked.

I will.  It will be bad.  Trust me.

My therapist agrees, and feels that I should not be made to do something that I do not want to do.  We get along just fine.  She even says things that I do not agree with, but I don't feel the need to tell her to fuck off because she is not imposing on my life.  She is not busting her shit out all over my life.  She is considerate.  C-O-N-S-I-D-E-R-A-T-E.  Let's learn that word, assholes.  Let's keep to our own personal space and save the rest of the population from our stupidity.  Wouldn't that be lovely?

Yes - I am fucking angry. 

Monster

I have gained 36+ pounds in just over a month.  I know for a fact that I am not eating 6500 calories a day, so the discussion the pharmacist had with me about "significant weight gain" caused by my medications, and the worry she displayed in regards to that fact, are valid.

I feel like fucking shit.  I don't have the strength to roll over in bed, so I am stuck in one spot and wake with countless aches and pains - it's like someone is beating me during my sleep every night.  Well, when I actually sleep.  I get an average of 2-4 hours a night so that is hardly sleep.  Speaking of sore, my knees are SCREAMING from the added weight that I am carrying.  I can see my ass parked in a rolling fat cart if this keeps up because the gain has been so much, so fast, that any more weight will make it impossible to walk.  Standing is torturous.  STANDING. 

I have to stop this medication that I desperately need to stay alive.  How will I do that?  Which would you choose?  I will not survive.  I will take enough pills to fall asleep on the tracks and wait for the next train.  In the alternative, I will continue down this road - each day gaining a few more pounds and looking more and more like a monster.  Each day hiding the beautiful person beneath.  When people see fat they see slovenly, lazy, stupid, gluttonous.  They do not see illness, sadness, despair, hopelessness.

 

They do not see me.

I have been sqawking about the weight gain to my psych team for weeks now - since the beginning - and neither of my mental health team members seem to give a shit.  They are only interested in getting me into a hospital.  I was nearly blue-papered twice.  I'm not insane - I just need some assistance with these medications, assholes.

The fact is that the medications are not working.  While they may be pulling the poles in, they are not stopping the mad swinging between them.  I still go from manic to depressive in a matter of minutes, several times a day.  I don't want to kill myself - that is the only  change.

Whoopdefuckingdoo.