Please forgive me....

...for this morning's post.

Self pity is a constant threat when one is suffering from chronic illness...especially one that is physically or mentally painful.  This weekend I slid down that slippery slope as depression  and pain had me in their clutches....It tends to skew your perspective and focuses your attention securely on your own navel. (You've heard of navel-gazing, right?? :) )  When a person also is alone 99% of the time, this becomes an even more pernicious predator....against which one must be constantly vigilant...and put it to a resounding and merciless death at its first appearance.

I admit, in this instance, it slipped past my watchful eye.  And I indulged in breathing the sickeningly sweet scent of "Poor Me Land's" air.  And like the cloying smell of ether numbs pain and ones' senses...so this atmosphere of self pity temporarily comforts and assuages the pain of the moment...but carries with it a horrible aftertaste when you realize just what it is you've bitten into. 

To feel sorry for myself is my most feared trap...and one into which it is SO easy to step!  It is numbing.  It is deceptive.  It can be tantalizing.  And it is thoroughly obnoxious.

So  I beg your forgiveness and patience.  I'm still not sure why I became so profoundly depressed over the weekend...but it was brutal.  It was a depth to which I hadn't fallen in several years.  I promise to be tougher with myself in the future.

What a child is meant to be

Things - they are A-Changin'

It' s been a tough week.
Last Saturday night I attended a spaghetti dinner at my church that was an awful experience and an eyeopener to how much has really changed since a year or three ago.  Back then, I knew everyone at church. And everyone knew me.  I was involved in church leadership...on committees...DOING stuff.  Now, I attend church once every couple of weeks...sit in my blue recliner in the corner of the front row...and immediately leave following the service...fighting tears of pain.
So I went to this dinner thinking how nice it would be to get out and to be with old friends.

Wrong.

I found friends have moved on.  Other people have moved in.  People who don't know me from Adam...I sat down at a table...which was avoided by most people.  One of my friends who drives me to some appointments sat down there finally...with her husband...and one other lady who has remained a loyal friend, although I rarely see or speak to her these days...sat down with me too.

After about fifteen minutes I felt the familiar pain increase ...as certainly as Old Faithful builds pressure and finally spurts.   Finally, I couldn't take the sharp ache and headed for the blue recliner... In the far, unoccupied part of the room, I sat alone...for maybe a half hour. And then heard the sounds of dessert...They faded into unintelligible exclamations of gustatory delight as people filled their plates and their mouths with the delectables.  Finally I decided that if I wanted anything, I should go up and get something.  So I tried to get out of the  recliner..reaching an arm down to pull on the level which would lower the foot rest...and found that my shoulder joint was too painful and too precarious to be able to pull on the lever...and  I couldn't free myself.  Nor could I turn my head or body around enough to summon anyone's help.   So I struggled in futility...and waited...finally a man wandered my way...and his eyebrows raised in amusement as he assessed my plight.  Thankfully, he was merciful enough to free me....

Anyway.  the whole time was lonely, and painful.
Then on the way home my ride wanted to know if they should pick me up for church in the AM...by this time it was approaching ten o'clock....WAY past my bedtime.  I knew that I'd missed my sleep window...and also that pain had escalated much to  much to be able to sleep anyway.  So I told them I would have to let them know in the morning when I saw how I felt.  This led to comments that despite their  back pain (they have a bulging disk) they are able to attend all the services ...Remarks of this kind continued all the way home. I SO much wanted to put them into my body...for just five minutes.

Then that night Sara died and I saw it as soon as it was posted.  Sunday was an equal hell...NO it was worse...I cried throughout the whole worship time...feeling devastated by losses. Depression sucked at my like the leech it is in a way that it hasn't for years.

And since then it seems like moment by moment...pain has escalated....until it is now North of Unbearable.  New joints add their voice to the mix of destroyed and damaged ones...daily.  My spine is increasingly stiff...I've noted that it seems to be fusing in a bent over position...as much as I long to straighten and stretch it out...I cannot.  Lovely.

Yesterday the arm surgeon gave me a tentative date for the first shoulder surgery...November 8th at the very latest...hopefully there will be a cancellation and I can go sooner.  Following that surgery will be my elbow replacement and then my other shoulder and then we can finally pay some attention to the aching knees.  But really  why am i going through all of this...when daily my spine degenerates and the spinal cord gets more and more compressed?

I see a definite advancing (or declining) toward a time when things will change markedly in my life.  I see a time when I too, lie like Sara did for the last year of her life....bedridden and crippled by this merciless and inexorable disease.  Until that day when Jesus finally beckons me and says, "ENOUGH" and I leave this world for the next.It seems to me that it would be so wonderful to have someone to talk to about this.  The only people who will listen and not get upset at my thoughts is those elderly friends of mine who are themselves, inches from heaven.

I really wish I could afford a therapist and had a way to get to  one.  It would be so nice to really be able to think these thoughts aloud...to release the rising pressure of words....

For a Friend Gone Home

Feeling sad this night. Mourning.  Lost a friend (heaven's gain)...and mourning too my own lost "life"--independence, usefulness, and ability to participate in the activities others take for granted.  So blog and blog readers...it's just you and me and the words I can give to you that remain.  Need to go and listen to some music now. Here is the playlist I made to comfort myself and others in times like this...go, listen, and be blessed.  Rigors of the Mind

For Sara, "GitzenGirl" (see: www.gitzengirl.blogspot.com)

 Photo by my daughter : Alexa

The Beginnings of my End

Think of a cigarette, its tip a smoldering red ember.  Think of a mental anguish so great that to take that cigarette and hold it to your arm, allowing it to tunnel deep, hissing and smoking, would actually be a relief to focus upon rather than being cognizant of the pain in your mind.  Think of a mental agony so persistent that it requires an entire pack of cigarettes to be burned down to stubs against the skin of your forearm…taking an entire night…hours of pain that seems to be not a pain because it is so slight compared to your internal distress caused by Voices which do NOT let up in their demands.  Then suddenly you snap into the reality of your tomorrow and realize with dismay that you have yet another wound to be concealed.

THAT is my reality.  That is my past and sometimes my present, (although I have not acted on these impulses in quite a while).  And telling my past to you now seems a great risk…requiring maybe more courage than I have.  One of my former psychiatrists once said to me that, to find someone with an illness as severe as mine, who is still able to convey their experience in coherent words, is a rarity and that such a story would hold great benefit to the medical community.  I’m sorry Dr. S. but that is not my purpose here.  I do not intend to educate curious doctors as to what goes on in the mind of someone who is psychotic at times. So what is my purpose?


It is to describe a life ravaged by illness, a biologically induced depression and psychosis, and riddled with other hardships and to portray the fact that DESPITE all of that; I serve a good God who can take these broken pieces of myself and use them to encourage the people I know and those I encounter.  It is to show you and perhaps to encourage you with the fact that, regardless of your circumstances or your history, God loves you and has a purpose for your being here…and that, in the discovery and pursuit of this purpose, there can still be great joy.

me in 10th grade

 It was amidst the unhappiness and busyness of my eleventh grade year that I experienced the frightening at first, but increasingly familiar Voices that were to be so much a part of my life in later years.  The first time I heard them I was in class and strangely, from nowhere, there came a voice, which was female and located just behind my left ear…”This is rubbish, and YOU are rubbish”…I looked around panicked thinking that, once more, I was the butt of taunts, but all eyes were fixed on their books and I knew that the voice had not come from any of them.  I was frightened…and thought much about this in the days that followed.  In the successive years, the Voice came again, at great intervals at first but then, with increasing frequency and eventually was joined by others until the whisper became a tumult....

me in 12th grade

It was around this time that my parents, I believe, alerted by one of my medical doctors; took me to see a psychiatrist and to undergo psychiatric testing.  I was frightened by the very real possibility that this doctor would be able to see into my mind and know of the confusion and sadness there that I'd guarded so carefully from view.  So I was very careful in the interview to appear lighthearted as we casually talked small talk of items that I thought had NO bearing on my circumstances or on the dark recesses of my mind, as the cliche puts it...  At least I was casual...he was more skilled than I gave him credit for being.  


As I took the LONG, long series of tests...I deliberately tried to skew the results..carefully hiding anything about me that might be construed as other than normal.  I am (or was back then) quite intelligent and I was sure that I had the stupid test beat.  After we drove home after an excruciatingly long day, my parents told me that I did not have to see the doctor again. I was relieved...and triumphant... "You SEE? I AM smarter than that stupid test or that stupid doctor!" I told myself with satisfaction....


But it turned out that I was the chump that day and not the doctor for, years later, my parents told me that in their concluding meeting with him, he told them that I had a serious mental illness...but was far too guarded for treatment to be beneficial.  So.  checkmate.  By the man in the suit.

Announcement

Just wanted to let you all know that I've been playing around with a new blog site ...it is located at:

Flying Faith; Muddy Trenches

It is a sampling of my artwork , poetry, photography and quotes that inspire me. 

Feel free to take a look.

A Decision made...for now.

I talked over my living situation at length with my pastor yesterday.  I'd meantime discovered that my insurance company will not pay for a living situation other than inpatient rehab.  And to manage anything else in terms of switching my Medicare coverage would require more time than I have prior to these surgeries... But we prayed together,...Pastor asked God to reveal to me clearly 'yes' or 'no' to the question of whether I should  now go into an assisted living situation.  I felt clearly God saying "no, not yet" and when we prayed again for him to confirm his answer, I heard God add, "I will provide for you."

So, I don't know really what that means or how it will come about.  I suspect from what the Pastor said before we ended the conversation, that my church will play a part in this provision for my need for help.  From wherever it comes, I just have to wait and trust that God has something in mind.  At first I was so frightened by what's ahead of me that I didn't really want to hear a "no" to that question.  I wanted the safety of  guaranteed help.  But since then--because I am so sure of God's answer to this question ...and because I know that my God delivers on his promises, I have relaxed and am now just in a "wait and see" mode. 

I know there will come a time...maybe soon, when that question will be answered in a different way.,..and that it will be really clear when "the time" comes.  I need to start thinking along the lines of preparing for that...making sure that my important belongings are dispersed as I wish  them to be...and thinning out my other less important "things" cluttering up my home and my life. But for now...I'm here...and I know that is where I'm supposed to be.

Tonight I have Bible Study at church.  I"m also in really really bad pain.  Pain enough to make me seriously consider not going...even though I haven't been to a church activity in over two weeks...and really really  miss it and miss the people there....The jury  is still out.  I  know that if I go, it will be an exercise in clench-jawed endurance.  And it will be misery.  I have to ask myself if the joy of being there will outweigh the pain of going.  It's a tough question.  I know I won't be able to focus much on the discussion...but will be happy  just to BE there around my faith-family.  Wow.  Do I ever HATE having to be isolated here - apart from the goings on.  It was bad enough not to be able to participate in any "extras" other than the church service over the past year. Now for it to be so really hard to go at all...well, it bites.

Taking a Step--Away from Independance

Today I did something brave.  Or desperate.

I called an assisted living center (ie: "nursing home")....I did this prompted by the sure knowledge that I will not be able to 'manage' at home alone following my shoulder surgery.  I am not sure, however, that I"m ready to pack my belongings and move into a single room with my life....for the rest of my life.  That idea will take more getting used to --and more desperation--than I am experiencing now.  I did find something interesting though.  There is nursing home, with relatively good ratings (see I checked) near to where my husband works..and five to ten minutes away from all of my doctors....and they have a program called a 'day program' where you go just for the daytime....and in the evening you go back home to sleep in your own cozy house.

This idea carries some appeal.  It is during the time when my husband is at work, that I will most need assistance in self-care and maintenance.  It would be nice to go someplace where I wouldn't have to be alone...and where, if I needed something, there would be staff available to help with it. And as the lady at the "center" said, if I am having any doubts about  my ability to remain home thereafter, I would be able to be more closely assessed and would receive the nursing home's input in that regard as well.

I liked that.  And I liked the "sleep in your own bed" part.
I called my insurance company....just for a "look/see" and found that, if the facility is not a rehab center offering me daily rehab; and if they are only there to assist in ADLs (activities of daily living), then no, they do not pay for that.  I guess then it would be up to my Medicare coverage to kick in.  BUT, I do not have Medicare Part B (yet) which is the part necessary for that coverage and...without Medicaid to pick up the slack...I would likely end up paying the percentage that Medicare doesn't cover.  ...Which could be a significant amount.

I really need some advisement here.
I'm not going to qualify for  Medicaid (at least not without a HUGE spend down) while I'm married and my husband is working.  Once more; it's a  case of "a little too much and a lot not enough." in terms of our income and financial status.  If he's been unemployed, it would have been easy. Nothing like being punished for being productive.!  My daughter is already cursing his job also because as she attempted to look into financial aid for college---even though she no longer lives with us--Daddy's income counts against her.  Why does no one ever subtract our expenses from that nice, 'big' income figure???  If they were to take into account our medical expenses alone, we would be teetering on the poverty line, I'm sure.

But no.
It doesn't work that way.
Why?
Because that would be uncomfortably close to fair...that's why.

Do I REALLY have Schizophrenia?

Questioning our diagnosis
This seems to be the norm for someone who is disabled, particularly someone with a mental illness.  And particularly a person with Schizophrenia. We have a disease. A disease that falls into predictable patterns-those which he or she will share in common with almost every single other person who has the disease.  This is not a matter of chance.  Nor is it a matter of exposure and assimilation.  I do not act like a person ill with schizophrenia because I hang around with similar people and I've learned or imitated their behavior.  No.  My behaviors were established long before I ever met another person with the disease...and it wasn't really until two years ago when I began to make friends on a forum for people with the same disease as I --and learned then that there were thousands, millions of people who struggle with the exact same things as I do....things which I'd thought were individual to myself.  Things which I'd thought were just my own "oddities" or strange characteristics; things for which I had no explanation....And they were things for which I hated and disparaged myself.

'Why can't  you manage to hold down a job and just get yourself together?"  Why is it so impossible for you to keep your room and home clean for longer than five minutes?  Why do you have so much trouble getting into the shower???  Why is it that there are no thoughts in my mind anymore...?  That  I will find myself staring into space for hours at a time thinking absolutely nothing?   That my formerly boundless creativity has taken a walk?    That I can't remember anything?  Why, why do I lose control of my thoughts and they take off on wild excursions, believing wholeheartedly the strangest things...being convinced of them--and then a couple of days later I can look back and think "That was nuts, What was I thinking to believe that?"  Why is it that I constantly make a fool or a spectacle of myself because of having these strange beliefs.?  Why is I spent so many years, when I had not a single other ambition but to smoke a cigarette and stare into the  space several inches above my cup of coffee? And why why do i have thoughts that I literally can HEAR and why are these  thoughts profane, disruptive and domineering?  Why do I sometimes actually believe these thoughts?  Thinking that these demons that have infiltrated my brain, or that the people who have overtaken my mind and planted these thoughts inside my head, their thoughts, not mine, have this power over me to affect and influence my behavior?  And why do malls and security guards and policemen send me into terror?   And on and on it goes.

And yet I would completely disagree with the diagosis of Schizophrenia..  No, this is just a bad phase,...things will right themselves...and I'll be okay again.  After all, I was "okay" for the years of my daughter's young life.  If I can just exert some self control I 'll once more be able to do what I used to do.  After all I used to be a unit secretary in a local hospital...That is tons of responsibility...It's a hard job...if I could do it then, I can do it now.  If only those nurses hadnt' turned against me and corrupted the mind of my boss to think I'd done something out of line, then I'd still have that job.  Right?  And schizophrenics are CRAZY they are never in control of themselves, they speak and nothing they say makes sense...I've never spoken a nonsensical thing in my life.........I've never believed anything crazy or out of line. Right?

  
No .  Wrong.

If my friends and family are to be trusted, there were long periods of time when I muttered to myself under my breath, and spoke irrelevant CRAZY things...  that I was suspicious and paranoid. That it was my own delusions which had made me report that nurse and THAT's why they all hated me and  I got asked to leave.  That I will never EVER "get myself together " and be back where I used to be, regain my mentail accuity and the intelligence which seems  to have flown right out the window.


I watched and listened to the people on this forum.  Hundreds of them.

All of them --JUST LIKE ME.
Struggling with the same things.
And encountering the same prejudices and misunderstanding of family , friends, and society that I have faced. The same mockery and hatred.  The same lack of comprehension.


They have all lost themselves and their potential and their former successful lives...just like me . .for the very same reasons.


Can it BE that I really have Schizophrenia?


Nah.