The Middle Road

Just a quick note to mark this place in time:  I've reached the blessed state of -- balance -- ; I'm not depressed or bouncing off the walls or cutting myself or wishing to die:  It's The Middle Road.

I finally found a doctor to prescribe my Depakote:  my primary care physician.  I'm in a very good place right now.  No side effects (knock on wood) and life is going well. 

I can't ask for anything more.

Just to be clear, and as a note to my future self:  I need my medication.  If I stop taking my medication, everything falls apart.      

The Chair

The weeks since my last post have been very difficult for me.  I know - broken record - but they were the worst in many years because they robbed me of the last thing I held dear: the ability to put my thoughts into words.  The fear consumed me, wrapped around me, suffocated me, and forced me into a tiny three by three foot square:  The Chair.  The Chair is my safe place - home base - no evil can touch me here.

Of course the warped part of that is the fact that The Chair is, in itself, evil.  It is my prison.  I don't see it that way, but it is.

The Last Stand.  

If you are of a certain age you remember the old tube televisions.  After turning off the set I used to watch the once vibrant and engaging picture get smaller and smaller until it glowed as the tiniest little dot in the middle of the screen.  That dot stayed there for quite some time, and then it was gone.  Much like that concentrated speck of light - an entire universe on the head of a pin - my world has shrunk to the size of a recliner.

After the failings of Lithium, Risperidone, and Lamictal, which gave me Stevens Johnson Syndrome (still dealing with the side effects of that), my doctors have moved on down the pharma line to depakote.  My doctor was so concerned about side effects that he started me on a very small dose - 250 mg daily for four days, and 500 mg daily thereafter for a couple of weeks.  We will move up at that time if all goes well.  I took my first 500 mg dose last night.  So far, so good.

Swallowing that first depakote pill took every bit of bravery and strength I had.  It took me two days to build up the courage...turning the prescription bottle over in my hands for hours.  Pills have not been my friend.  In fact, the pills charged with bringing me back from suicidal ideation nearly killed me. 

The words come so much harder now, so I have very little to say.  It is important to mention that I am not a victim to my diagnoses.  If you could see inside my head you would see an epic battle being waged against the disorders by my desire to be well and live a balanced and joyful life.  I do not sit here because I've given up.  I sit here because I'm holding this fucking mountain as a last line of defense against disappearing forever.           

She's a maniac

I fell hard and fast yesterday, ending the day with suicidal thoughts.  There is simply no way to do this alone and survive.  No matter how much I want to believe that what I am experiencing is situational, or explained away with some other fantasy, the fact remains:  I am not well.  My biochemistry is all wrong.  I must keep going - keep searching - keep working hard to fight the fight to find ME. 

Instead of a midnight walk to the railroad tracks, I reached out for my phone and left an after-hours message for my therapist.  She returned my call straight away upon arriving at her office this morning, and I saw her today. 

Here is what I know (and what my therapist told me):  Making that call was brave; I wanted to die.  Making that call took incredible strength; I was so tired.  Making that call was wise; I wanted to end all thought process because even simple awareness caused me unimaginable pain.

I hate the deep depressive states the most.  The intrusive thoughts of ending my life used to frighten me, but now I know them like certain old toys.  You know the ones -- the toys you take out and play with on occasion - the rainy day toys.  The 'what if' toys.  The whispering toys.

I happened upon a quote from novelist Anne Lamott yesterday that tugged at the despair and actually gave me a bit of a chuckle.  For all I know it probably helped my hands reach for that phone.  It said, “I thought such awful thoughts that I cannot even say them out loud because they would make Jesus want to drink gin straight out of the cat dish.” 

My darkness is the darkest of the dark and the most horrific of all horrors.  It is a closed box void of all choices but one - to stop the brain.  It's peaceful in a way - there is nothing else, just the plan and the hope that the plan works.

Falling asleep last night was like throwing a life preserver out for the sunrise.  I made it.  Not only did I make it, but I greeted the sun with wide, wild eyes.

Enter the maniac.

I hit the ground running - literally running.  I ran downstairs and throughout the house - circling each room for no reason other than to see it, smell it, leave my spirit in it.  I did this until my bladder decided that a pit stop was in order.  I barely finished there when I called to my husband - still in my pajamas - and yelled that I needed something to eat to take my prednisone.  The dog was by my side for all of this, but not for the fun - she was whining and crying on our wild and confused tear through the house.  She was afraid.  I was afraid.  I woke up in a full on manic state.

My husband took me to get some food, which I swallowed without chewing when we returned.  Knowing that these moods can be a quick flash or protracted and painful, I took advantage of the beginning stages of this upswing and brushed my teeth, listened to a couple of new albums while pacing the floor, answered my therapist's call, took a shower (for the first time in 5 days, performing each action 8 times.  Twice), dressed, decided that we all needed manicures and pedicures (my husband had a pedicure today)...and then it got worse just before I entered the hospital this afternoon to meet with my therapist.  I know how this works.  I could not write my name.  I could not speak my name to the receptionist, who had to call for my therapist who quickly took care of the usual paperwork.  My thoughts were coming hard and fast - too hard and fast to process and it made me very afraid.  It always makes me afraid.  It's as though some invisible force is wearing me as a suit for a marathon.  It's exhausting.  So scary.  It's near as bad as the lowest of lows because that is where the high drops you.  Imagine running up the side of a building, reaching the top, floating over the height of things...never touching the ground.  This actually feels quite nice for a short time.  You certainly get things done.  At the beginning stages I am hyper-focused, so much so that I am capable of INCREDIBLE moments of brilliant thought.  I solve problems, write beautiful words, appreciate splendid music and views, love with my entire heart - it is what I would imagine heaven would be like if it existed.  These moments are dubious in their trickery, and they are fleeting.  They can go on for a week or more, or tick away with the seconds. 

This is different for everyone.  For me, because I learn more each time this happens, these moments begin to overlap in a frustrating game of "catch me if you can" and I end up running after the runner in an effort to keep up.

I never catch up.  The runner is a heartless bastard. 

I soon lose the ability to think clearly.  I have a hard time pulling words from the mess in my head.  I am unable to write my name, or spell it for that matter.  I get anxious, agitated, scared, frustrated.  I often lash out in extreme anger - like an animal without a voice.  I am held captive by my inability to keep up with the runner.  I can literally see the runner leave me standing in the middle of the road --- alone, confused, exhausted.

I write this now with enough valium on board to ground a herd of cattle.  I am not tired, but I do have some control over my brain and the typing helps release some of the nervous energy that would usually be spent tapping myself in the head or wringing my hands or tearing at my skin.


These posts are difficult to write (I still click my teeth once for every word - my poor teeth), but writing seems to be the only thing that brings me back these days.  Writing is my anchor.  These posts are also a way to track my days in real time and end up being very valuable in my treatment and, hopefully, my recovery.


My goal for this day:

☑   Live, no matter what.

I did that.   

 

    

On my own...again

All of my appointments have been cancelled.  I have no therapy, psych nurse practitioner or psychiatrist/med management appointments at all.  I am on my own...again.  We've come full circle.  It's hard to avoid feeling down right now.  I thought someone had discovered the elusive answers to the issues that have consumed my life.  I thought that things would get better from that point forward.  There would be hard work, but I was willing to do that work - to put forth an honest effort to invest in my health, something I have been unable to do until now because I simply did not know where to begin...what was wrong...how to fix it.  I was told that it would "get better from here." I put faith and complete trust in that statement.  I believed that statement with every cell in my misfit body.  I had hope. 

Everything happened all at once back in April.  All of the balls that I had flying in the air came crashing down.  I was up and down and up and down and down and...down.  I wanted to die.  I wanted to live.  I wanted to squeeze the shit out of life with my fabulous plans...fabulous plans that I could not make happen because my mind was a jumble of bits and pieces and nothing fit.  Nothing made sense.

I fell into the deepest and most frightening despair of my life.  Self harm was almost constant.  I would cut my stomach with scissors under my desk at work (usually while my boss was grilling me), claw at my body at home, in the car, while I was sleeping.  When I saw blood, I felt better.  Contrary to what most people say about self-harm being a release and a cry for help - it was more; I wanted to die.  I made plans to die.  I was going to take my life.  The living world had lost its pull on my heart and all that was left was my mind.  My mind was saying yes to the end.  It felt right to finish the journey.  People would be better off without my negative energy in their lives.  They would go on.  Be better.  Do better.  Learn from my illnesses.  I had to give myself permission to stop trying so fucking hard to be well.  I gave myself permission to stop pretending. 

It happened all at once. 

After letting the mask fall, I told my husband that I had to leave.  I wasn't going to, but after 20+ years of marriage I was not going to leave him with a letter.  I was not going to leave this world without saying goodbye to my one true friend.  He did not ask me to stay, but he did beg me to wait.  He stopped everything and asked that I join him in a discussion with our family doctor.  I agreed and we saw him the next morning.  Our family doctor referred me to a therapist and psych nurse practitioner.  After some discussion and many tests, they diagnosed me with several disorders and started therapy and medicine.  I had hope, I think.  I certainly had something.  It gave me a moment to focus on myself - perhaps to stay alive and see if I could salvage the second half of my life.  Perhaps find joy.  No, not even joy.  I desperately wanted PEACE in my heart and mind.

The answer quickly turned sour and became a problem.  Another problem.  Another thing to endure and survive.  I tried.  I FUCKING TRIED, but the cure was just another cross to bear, and my weary shoulders had long since worn out.  I gained a massive amount of weight, pissed my pants, drooled, and started to loathe the very sight of my ever-expanding, hideous body.  This was not the answer.

I discussed my issues with Lithium and Risperidone at every appointment, but my concerns fell on deaf ears.  I felt like a prisoner to another problem.  It was my problem - they gave it to me and expected me to make it work.

That did not work.  I spoke and no one listened.  I became the patient.  The mental patient.  I was not a partner in my own care - my opinion did not matter.  I had no say - no control.  The people charged with my care - my life - would just ignore my questions and carry on as though they were never asked.  I would ask again, and the conversation would continue.  I was invisible.  My input did not matter on this train.   

In the meantime, I had a career and responsibilities.  I have a husband and children.  I have a home.  I have an extended family.  There were life events - graduations, college, new responsibilites, injuries, demands, bills...

It happened all at once.

My boss, who had abused me for years (and I permitted it because I needed that job), layed the final straw on the trembling pile when he demanded that I cancel two medical appointments and tell personnel why I had those appointments.  I made the decision to leave my job of almost 11 years.  In doing so, I knew that I would leave that career forever.  I'd lost my edge many years ago and it was time.

It happened all at once.

I wanted to die, attempted to die, left my job, received shitty care, was twice almost involuntarily committed, agreed to a forced intensive outpatient program that nearly killed me, gained 45 pounds, and lost every last regular contact with coworkers, colleagues and clients.  I lost control, my self-respect...I lost nearly everything.

I'm right back where I started, only now I have nothing, save my husband.  I have less than nothing because my care up to this point has cost me thousands of precious dollars and did nothing but make things worse.  I am obese.  I am battling serious adverse effects of Lamictal.  The children (3) will soon be off (one is already) to colleges and careers.  We have to sell the house.  Life is forever altered because I dared to ask for help. 

I am exhausted.  There is nothing left under my burned skin.  I feel a small twinge of life deep inside, but those have let me down before.  The plan going forward is quite simple:  set goals, do my best, focus on what I have accomplished and not what is left undone at the end of the day.  If I run off the rails, I will seek help.  "Help" has been very unkind to me, but the twinge is telling me that I should keep trying.  Is this good?  No, no this is not good.  This is a dangerous time.  I know that.  My family knows that.  We tried.  I tried.  That twinge is all I have and I pray that it is enough to carry me through to the next source of help and hope, if there is such a thing. 

It's all me.  The scary part is that I have no idea who the hell "me" is.   

   

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. 

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.         

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.        

When one door closes . . .

 

“When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us.” - Alexander Graham Bell

After the horrific experience at work earlier this week, I was completely drained - had nothing left to give.
 
http://www.blogger.com/blogger.g?blogID=2305207368736623879#editor/target=post;postID=478760626101715239

It was as though someone pulled the pin on a grenade and threw it into the middle of my nightmare.  I did end up going to my appointments the next morning and learned that my illness had progressed to such a serious level - extreme was the word written on my chart - that my doctor told me that she was immediately admitting me to the hospital.  I refused.  She asked to speak to my husband and actually took my cell phone.  In the end, I assured my doctor that if I wanted to kill myself, I would not be in her office - - I would be dead.  She agreed, but insisted on daily telephone check-ins until Friday, when she fully expects me to enter the hospital for extended inpatient treatment.

I left the office with sincere promises that I would not crash my car or swallow pills and went to the pharmacy to pick up my prescription for Lithium.  After that, I arrived at work to an angry boss and a tossed desk.  Typical. 

I confided in a coworker and eventually made the decision to leave the firm.  Unfortunately, leaving the firm - quitting (such a harsh word for a perfectionist) - means that I would have no income.  I decided to meet with the personnel director to ask them to "let me go" so that I could collect unemployment.  After two meetings totalling 4 hours and many, many tears, they granted my request.  My last day at the office is Friday 5/18.  I have some training/transition work to do, but my days as a slave driver for satan are over.  That door will close.

Today was an interesting day.  The word was out and people were crying and in shock about my resignation.  While it feels nice to be wanted, the finish line is in sight and I am hyper-focused on crossing that line. 

I have moments of panic, extreme happiness, and great emotion; all of those a result of my illness, not necessarily due to the fact that I am leaving a place where I spent 11 years of my life...

Yeah - I don't believe it either.

I increased my risperidone dosage along with adding the Lithium to my meds.  I am also slowly decreasing, and eventually stopping, my sertraline, which was actually making me psychotic.  I am much more relaxed and the mania has decreased.  However, I am suffering from fairly severe migraine headaches and will discuss this with my doctor next week.

We have new doors opening every day, to include relocation and a potential business purchase.  Most people would let fear keep them from these new opportunities, especially during times of great stress, but I will walk through these other doors with my feet on the ground, my brain engaged, and my expectations flying high.   

Exhaustion

Last night was bad - very bad.  I had all of my pills in my hand and was ready to swallow them and die.  Of course I googled to make sure that what I had would actually kill me, and there just wasn't enough.  The realization that I would continue to feel pain sent my brain screaming inside of my head and everything peaked at a very loud and singular shrill yell, and then all was quiet.

I suffered through several hours of pure, white-hot pain.  The only thing that got me through was rolling Dante's circles of hell around in my mind - trying to decide where I would fit in if I joined the party.  Always joking, even when I am about to end trans.

I went to bed, thoroughly exhausted, at 1:00 this morning.

I have to get out of this chair, shower, make myself presentable, and go to work.  Now.  If I wait another 5 minutes I will be late.

I am choking the shit out of my life in an effort to keep my job.  This does not help me move forward in my care.  In fact, it makes things much worse.

There are no answers right now.  I am too ill to plan the moves required to protect myself if I lose my job or have to quit.  If I had a clear mind, I would formulate the best course of action.  I am unable to do that at this time.

I need rest.

Under the rock at the bottom of bottom.

Today was a bad day.  My brain fails me all the time now.  I don't have much to say.  I do not want to speak.  My mind is so mish-mashed.  I scribbled pages and pages of thoughts and observations today, but none of them really matter.  They all lead to the same place:  my brain fails me all the time now. 

My next appointment is on Thursday.  I am very low this evening.  Very low.  I googled how to kill myself without pain.  This (killing yourself without pain) does not exist; HOWEVER, there are lots of fucking assholes who enjoy making fun of people like me who are looking for an answer to this question, so I suppose I should thank them - the fucking pricks - they saved my life by PISSING ME THE FUCK OFF. 

I would be happy not to wake in the morning.  Switch off - done - peace.  Please know that I am using every bit of strength I have in my mind and body to stay with you all (my audience of zero) at this moment.  There are people I want to meet.  There are things I want to do.  There are places I want to see.  Those are the only things keeping me here now.  I am trying for all of those things.   I am trying.  This is the hardest thing I have ever done -- stay alive.  It would be much easier to end trans.  It would. 

I filled my risperidone prescription.  $1.06 - what a bargain.  The pharmacist looked at me with that face - the pity face.  Fuck you, bitch.  I am trying.  "This will make you gain considerable weight - I want you to be aware of that." 

"Really?  That's awesome, because  I'm not fat at all right now," (showed the straining waistband on my slacks)  - just give me my damn pills."  She pissed me off with the pity face.  I'm sorry.  That's all I can do is say I'm sorry. 

I'm taking the pill as directed.  I have to.  I have to trust that someone knows more than I do right now.  I am unable to trust myself.  I can't even remember what day it is without checking every few minutes.

If I believed in God I would pray.  I'm shit out of luck there.