Tuesday, November 29, 2011

Why am I Here ?

Today was supposed to be my elbow surgery...however it was postponed yesterday until Dec. 13th...because the doctors all considered it to be too risky to be done at the hospital's satellite location where it had been scheduled to occur.  Not the that surgery is so risky; just my health issues make the anesthesia risky and they wanted to have the resources of the hospital should something go awry and also wanted to be able to easily admit me should there be a problem.

Honestly, today I'm glad I did not have to deal with surgery.  I'm in a lot of pain...(back pain and a splitting headache from my spinal issues in my neck)...and so pretty much have decided to stay in bed today...The only two goals I have are to make protein bars (done, just in the dehydrator now) and chicken soup...which is in the process.

It's a rainy, cool, damp day here today...the worst possible kind for my body but if I have to stay in bed, I'd prefer it to be on a rainy day...that way I don't feel like I'm missing anything.

Today I've been considering the question of "God, what do you want me to be doing with this part or  actually the rest of my life?"  I do not honestly feel that my life will go on for too much longer but I have been feeling really pretty useless and pointless lately.  I posed this  question to my dad and he responded with this "  have you considered my servant , Cynthia??" which if you don't know is a quote from the book of Job.  And I got to thinking about Job.  Initially, he raised a large family, and maintained  a righteous exemplary life...but after he was smitten with catastrophe and illness...what was his purpose? what was his function?   to sit amongst the ashes scratching  his boils with  a shard of pottey ?? Not so very useful.


But think further. 
He refused to blame God despite his friends' unfair accusations against God and against Job himself. 
He steadfastly declared that even if God should slay him, he would continue to worship Him. 
He steadfastly asserted God's claim to his life and family and possessions...and knew that if God should see fit to take them from him, he could not in any right, protest.

What did that accomplish?
Did it change his friends' minds about the situation? NO.
Did it result in anyone's real benefit? In other words was JOb able to serve or assist anyone at that time?  NO. (and this is one of the areas I struggle most with ...feeling useless and like I'm of no benefit to anyone).
Did it draw his wife closer to him or bring her closer to God?  NO, she told him to "curse God and die".

So what was Job's big accomplishment during this time of severe testing?
Did he change Satan's mind?  Did he make Satan fall in worship at God's feet?  NO.

The only thing that I can see that Job accomplished during this suffering was to bring God pleasure and pride.  In all that happened., Job did not sin. 
Yes, he  questioned.  And yes, God put him in his place for questioning.  But he didn't sin.

And God was pleased by that.

So maybe just by getting through day after day, without anger; with out blaming God, without despairing or giving up---I'm bringing God as much pleasure as I would if I were pastoring a church, or serving as a missionary.

And isnt' that what it's all about.?
Pleasing God?

I pray  that God can  point to me and say "Have  you considered my servant Cynthia?" with satisfaction and pleasure.  And all I really have to do is to keep on keepin' on and to continue to worship the God who made me; and the God who has placed me in my current circumstances.  I can honestly say that thus far, I"ve done that.  And if that is what I'm supposed to do right now; or until the end of my life; then I'll do it...to hear, "Well, done, good and faithful servant" because isnt' that more about who we are than what we do?  Who can honestly impress God with their service?  I don't really think anyone can.  But we CAN delight him with our faithfulness.

Monday, November 28, 2011

Calling You

Phil Keaggy


Inside, peering through my mind's eye
Looking to another time where time ceases to be.
I cried, no one hears but You alone,
Listening to this monotone for the missing part of me.

And I'm calling You in unspoken words
I'm calling You, I struggle for words in a whisper.

Outside, a beggar's plight through a window pane
No shelter from this pouring rain to be there by your side.

I've tried to do it on my own again,
And so I stand here alone again with nothing left to hide.

And I'm calling You in unspoken words
I'm calling You, I falter for words
And I'm calling You in unspoken words
I'm calling You, I'm searching for words

Hear me whisper as I breathe out Your name,
Break the chains free and rekindle this flame,
Come and hold me.

And I'm calling You in unspoken words
I'm calling You, I struggle for words in a whisper.

Sunday, November 27, 2011

Waking

I just slept for two days and two nights.  I think anyway...maybe it was one day and two nights. I am having surgery the day after tomorrow...and have made absolutely no plans....no preparation.
My  head is exploding.  I'm nauseous.  My hands are like baseball mitts. I need a shower.  And I'm not quite sure who to trust.  But I can give you a list of the people NOT to trust....that much is sure.  I don't have anything profound to say and if I did, you would likely not understand it as I seem to be speaking in a code that no one can decipher.

Thursday, November 24, 2011

The Oddest Thanksgiving Thus Far

I've had Thanksgiving dinners served on paper plates on cardboard trays in cafeterias full of unbathed people with tangled matted hair all mumbling their "thanks" - (I suppose.)  Mumbling something anyway.  I've had thanksgiving dinners when all I would allow was a slice of wheat bread (with margarine--to celebrate the special day) while perched on one of those cafeteria benches myself.  While  I thought of Thanksgivings past.  When my brother, Wes, and I would stay home while my parents went to the early morning church services that day and we, armed and dangerous with school scissors and Elmers' glue and construction paper would create marvelous creations: Pilgrims and "Native Americans" (although we wouldn't have had a clue what a Native American was if you'd have asked us; they were just "Indians" of course) and we would create paper replicas of that first Thanskgiving spread here on American Soil where the Divine Shone his approval from above.  

And while we scissored and pasted and laughed, (and argued); we would watch the legendary Macy's Day Parade wending it's way down 5th Avenue with the massive floats....no smart mouthed fat boys like Bart Simpson then to ruin the good vibes of the day...No, daddy's hoisted their clapping cheering tots to shoulders to best see the  incredible flying Snoopy and to be the first (maybe) to catch a glimpse of Santa's sleigh as it appeared and to be the recipient of a smiling ((promisory?) wave.

Then, uh-oh, a car wheel crunch on the gravel drive and  slamming doors scurried us into action. Sweeping all of the paper and gluey shavings for safe keeping under the couch, we scrambled to set up our staged feast of multicultural equanimity onto the dining room table where in a few short hours it would jockey for place with cranberry sauces, rolls, "The Bird", stuffing, potatoes, green bean salad etc etc.  But for now, there it was , center stage in all its pageant glory.

All this was recalled, (maybe), on those bench straddling days.  And it was recalled again on days of IV drips and Oxygen tubing tangling its way between plastic fork and mouth as I ate,  - again on cardboard tray, this time graced with a napkin with a Turkey wearing a pilgrim hat wishing me a "Great Gobblin' Time" as I gratefully ate the first meal in months that differed from the normal seven days of choices over and over for months.

This year, I narrowly was spared that.  I was discharged yesterday from the medical hospital...came home to a chaotic house of laundry and disarray,  Sinks full of dishes, piles of chaos in my room where I'd hurriedly packed on Sunday  Now facing perhaps the oddest Thanksgiving Day of them all.  And being extremely grateful for my family - or parts of it anyway who are gathering to surround me with protection as I wobble once more on the edge...and  am according to my prayer chain "very confused and needing some help in managing."  Makes me wonder what I've done to deserve such fame and  recognition??

Monday, November 21, 2011

Hospital Woes

In the hospital since yesterday.  Blood Pressure issues...I am disgusted by this body..and disgusted by nurses and even doctors who just DON'T KNOW MEDICINE.  I just heard a nurse giving report on me to another nurse in the hall.  According to them the morphine i am receiving is for the severe headache I had yesterday.  According to the my cervical fusions are "genetic"...no word about my spine ...No word about PA or AS...And they wonder why medical errors take place.  I provided them with a paper neatly and specifically outlining and describing my medical conditions....HOW CAN THEY STILL GET IT ALL COMPLETELY WRONG.?

Friday, November 18, 2011

Gifts and Crosses


Early this morning I watched a video blog by Bill MacPhee (http://youtu.be/zgi9N8XMNec) a man with schizophrenia who now is the editor of SZ Magazine and the CEO operating several online newsletters for differing forms of mental illness under the heading  of Magpie Mags, Inc.

He defines recovery as being able to say, "I wouldn't want to be anyone else but who I am today."  This definition really struck me between the eyes...I have fallen prey to an attitude very prevalent among people who suffer from mental illness, particularly Schizophrenia.  This is a sense of deep sadness and regret -- hatred for who we are, and longing for who we once were.  We mourn our lost abilities both cognitive and physical....     

So despite my
generally high degree of functioning (mentally), I fail this definition of recovery quite miserably.  My largest regrets lie in two areas: the intellectual (which includes a former acuity of memory that allowed me to recall everything I read or heard instantly) and also my physical appearance; my slim figure (now ruined by my medications and my sedentary lifestyle forced by physical illness and lack of motivation due to SZ., and my youth-my strength , flexibility, freedom from pain etc.  And that is not to mention my dislike of the positive and negative symptoms I struggle with daily

Today as I was reading Gitzengirl (Sara Frankl's blog)  I read of her early struggle with this same topic.  I'm somewhat embarrassed to say that she was much quicker in her ability to deal with these regrets than I have been...although maybe not really.  This was written in 2008 and she'd had the illness even before 1997.  These are her words:


I needed to remind myself that my old gifts were gone, and they didn't serve me in living my best life anymore. I had new gifts and crosses given to me, and I had to rethink how to live my life with them. It took awhile to find my new normal, and that continues to change on a daily basis. But when my focus is on living the best life I can with what I have in that moment, I always find my silver lining. I'm not expecting the gold I used to have. I'm not looking for the gold that I think I should have. I'm looking at the silver right in front of me and saying thank you every day
 She was so right here.  I definitely have new crosses...and these are really gifts from God, evidences of his trust in my ability to carry them and honor him in them...or evidence of my need for growth of strength,endurance and wisdom in these areas.  And I have new gifts as well...newly developed strength, endurance and wisdom! Note that these gifts are directly related to the crosses.  Another thing that falls into this category is a trust in the goodness, omniscience and love God holds for me....one that was so tried that it failed me in the onset of my illness and major depression.  That failure led me to reject God entirely for fifteen miserable years while I searched for a meaning to life which simply wasn't there in the "absence" of God.  I have endured levels of physical pain heretofore unimaginable to me in past years and learned to appreciate every single ability that still remains.  this does (or should ) lead me to an "attitude of gratitude" that was noticeably absent in my earlier years....when I felt that God "owed me" more than what gifts I''d been given.


However this gratitude is not yet a habit...it is not yet my "home base" --and I still bear some traces of unhappiness with who and what it is that I've become as a result of these illnesses with which God has seen fit to entrust me.  I still think back with some sadness at that  17-19 year old who had her pick of careers and potential to burn.  I think it is the "waste" of these abilities which bothers me the most.  But who am I to complain about or question God's purposes?  I now have a sensitvity to the pain of others that I never couldn't claim 30 years ago.  I have the ability to tolerate almost any physical discomfort--without even shedding a tear. (I save all my whining for here. lol).


Right now I'm grateful to Bill MacPhee's insight and to the fact that he put his finger right on the pulse of my problem in dealing with my life right now...and to Sara Frankl's wisdom in her personal solution to the very same potential bitterness that springs up as daily, abilities and strengths are being removed and new pain and dependance takes their place. These bitternesses need to t be nipped in the bud and replaced with gratitude for all that God has given me and for his plans for me...plans to prosper me and not to harm me (Jer. 29:11)  And the only way to make this exchange is through intentionality and awareness of the state of my heart and of my many blessings.

Panning for Gold

I've made an important decision tonight.  I'm going to stop (or greatly reduce) my talk about my pain and my being sick...I just looked over my last 9 or 10 posts...almost ALL were about illness and pain.  I'm sure you're sick of it. I know I'M sick of it.  So enough.

I'm sick.  I'm in terrible pain.  You all know that if you've hung around here at all.  So there is little point in reiterating it constantly.  I was just working on a goal I've made; I'm going to begin at  the beginning of Sara Frankl's blog "Gitzen girl" www.gitzengirl.blogspot.com  and read all the posts..from 2008 on.  As many of you know, Sara very recently died from Ankylosing Spondylitis, the disease with which I've recently been diagnosed.  I've been following and reading  her blog since she began it.  But now I'm reading it with a new perspective.  Sara was only 38 when she went to be with Jesus.  I have a full decade (and then some) on her.  But you know what? She was more grown up about it all than I've been at all.  She had a lot to teach me.  And she's already taught me a lot.  But I know that NOW there is even more there for me to know...to integrate and to BECOME. I'm not trying to become Sara-with-wrinkles.  I just want to have the joy in her that drew people to her so irresistibly.  I want to please God like I know she did.  And I want the welcome in heaven that I know was waiting for her.

Already, just in the first month of her blog she taught me several things.  1) There's nowhere to go, but through it.   And that being the case, I want to stop whining about it...and go through it with courage, making Jesus smile on my way.  And 2)  It's all about your life and not your death.  There is so much about my life that I haven't  told you.  And I'm sure that by remembering, I will also learn.  And maybe I will be able to lift the shroud of fog that covers my recollections...and see them clearly...and re-discover things long gone.  I had 15 bilateral ECT - electraconvulsive therapy - "shock treatments" in 2009 when I was very psychotic and depressed. These resulted in massive memory loss which has never returned to me...although bits and pieces have returned..  But if I chase a memory trail-taking an image or a recalled sentence and pursuing it with all my might - sometimes more will return....

What is a life...if not recalled, not recorded, not realized or benefited from? 

So stay tuned...and please return to this blog...I promise: no more "woe is me" posts.  Because woe is NOT me.  I'm blessed.  In so many ways.  And it's time to focus on these blessings and to be grateful for them.  Trauma, if that's where you decide to live, can only keep on hurting.  Yes, my life has been difficult and painful...but with all these storms, there just had  to be lots of rainbows.  So I'm going to go treasure hunting (to badly mix metaphors)  because after all is that NOT the point of this blog?  This is not about darkness.  It's really about the treasures found there.  So time to start panning for that gold (okay yet another metaphor) and to stop drowning in the river.

Here's the theme verse of this blog - in a different version than you may be used to: the Complete Jewish Bible.  Which gives the verses as they are really translated from the Hebrew.

Isa. 45:1-3
Thus says ADONAI to... his anointed, whose right hand he has grasped, ...so that doors open in front of him, and no gates are barred: 2 "I will go ahead of you, leveling the hills, shattering the bronze gates, smashing the iron bars. 3 I will give you treasures hoarded in the dark, secret riches hidden away, so that you will know that I, ADONAI, calling you by your name, am the God of Isra'el. 

Ill and Feeling Pensive

Feeling really sick tonight...with a sinus  infection and bronchitis.  Angry because I have to be on steroids again and the fact that this jeopardizes my surgery on the 29th.  Worried because of the craziness that steroids always bring to me.... I asked for prayer tonight on my Facebook status and a friend from church posted this for me...Psalm 20.

For the director of music. A psalm of David.
 1 May the LORD answer you when you are in distress;
   may the name of the God of Jacob protect you.
2 May he send you help from the sanctuary
   and grant you support from Zion.
3 May he remember all your sacrifices
   and accept your burnt offerings.
4 May he give you the desire of your heart
   and make all your plans succeed.
5 May we shout for joy over your victory
   and lift up our banners in the name of our God.
   May the LORD grant all your requests.
 6 Now this I know:
   The LORD gives victory to his anointed.
He answers him from his heavenly sanctuary
   with the victorious power of his right hand.
7 Some trust in chariots and some in horses,
   but we trust in the name of the LORD our God.
8 They are brought to their knees and fall,
   but we rise up and stand firm.
9 LORD, give victory to the king!
   Answer us when we call! 

I was very touched by that...and by the fact that she said she is praying this passage for me. I feel very secure in the prayers of God's people tonight.  Any sickness at all is dangerous for me. I am taking drugs which are intended to destroy my immune system to keep it from attacking my joints; so to recover from an infection is difficult ---and risky.  I'm hoping that because I caught this fairly early, it will respond to the antibiotics...and that my asthma, always problematic when I have this combo of infections, will quickly be controlled by the steroids. I'm scheduled for elbow surgery on the 29th of this month..and have masses of important MD appointments pending.

I keep praying that God will take me home to be with him in his kingdom....but when I actually get sick, then I always pray to get well! lol.  God must be wondering which it is that I really want.  I guess I just don't want to suffer. I finally got the nerve up to ask my daughter to be my proxy --in my durable medical power of attorney form that I'm filling out...She was pretty calm about it...and agreed to do it.  I questioned her as to whether or not she could handle it and carry it out and she said, Yes, she could.  This is a great relief to me. I didn't have any other good options for people to ask and I implicitly trust her to carry out my wishes.

Sorry for the gloomy topic.  It's not gloomy to me though.  It's something I've had to think about.  Something that is close to me...follows me like a dog on a leash. I've been close to death many times.  And with each new diagnosis..it looks more appealing. 

I look forward to heaven eagerly.  I just sometimes worry that I'm not quite ready for it....that God still has a lot of refining to do in me....that he wants me to return to the place of intimacy I had with him just a short while ago first.  And how MUCH I desire that too!  I don't know what is impeding me. Is it just that my capabilities mentally have changed so much that my capacities for prayer and study and meditation have changed so greatly that my former practices are just not possible anymore?  I know my desire for him...my joy in worship are still the same.  It's just ...I don't know...my level of moment by moment awareness and prayer has changed.

I've tried to change these things. I've prayed for HIM to change them in me.  What is lacking? I know my prayers are sincere.  My desire is true.  Please, if you know the Lord and he is your Lord, please pray for me in this.  Pray that he will ready me for heaven...or for living and doing his will for me here.
Thank you friends.

Wednesday, November 16, 2011

Jesus Culture- Your Love Never Fails

New Diagnosis

I wrote my rheumatologist an email over the weekend.  I told her of the severity of my pain...and of my latest symptoms...a shaking head and hand; headaches springing from my neck - severe and almost constant.  And I told her of my sense that there is something more at play here than "merely" PA.  She looked at my MRI of my cervical spine, done last week....and agreed.

One of the questions I'd asked her in my email was "Do I have Ankylosing Spondylitis?--and even though I really suspected that I do, I was still shocked when she agreed with me that it looks like that is what we are dealing with here because of the spontaneous fusions occurring on multiple levels in my spine.  She told me that I need to immediately see a spinal surgeon to find out whether or not surgery would be helpful to make it more unlikely that I will become totally paralyzed.  I did some reading--it's not so much the disease that would paralyze me as a fall, even a minor one, which can cause a fracture and cause paralysis or death

Does AS kill?  Yes. It definitely can (as we all witnessed in the passing of Sara Frankl).  Does it always?  No.  Not always.  But I have a sneaking suspicion that those who are "lucky" enough to live--often wish they weren't...And this was confirmed when I read of the risk of suicide amongst sufferers.  From what I've read online, it's a miserable, painful, exhausted life to look forward to. But I'm already experiencing that....So I wonder with some fear, "How much worse can it honestly get?"   I'm listening to Mark Schultz's song "What will you do with the Time that's Left?"  and he asks an even more thought provoking question: "What will you do with the Time that's Past?"

I look back on the years of health I had, most specifically my years in Washingtonville, NY--when I was working as an artist; at the only years of my life that I could label as "healthy, happy, and normal" --and I think to myself, 'If I'd known that that handful of years was all I'd have...how would I have lived? What would I have done?"

Well, for one thing, I would have taken greater care with the paintings I painted.  I would have been a better mom.  I would have done a better job.  But then I have to really step back and say, "you know? I was doing the best that I could at the time.  My artistic ability and my 'eye' kept developing --even during the years that I wasn't painting...so now, I look back at those paintings and find them amateur and awkward...but really, If I could have done better at the time, wouldn't I have??  Yes. I would have.  And that goes for just about every other thing that I did back then. I was the best mom, the best child of God, the best housecleaner, cook, card maker, wife, friend...that I knew how to be.  And honestly,  I don't think  greater effort would have improved anything...because that's how I always lived my life.  Poured out.  100% effort in doing my best.

And this was true of my faith life: poured out wine; broken bread as Oswald Chambers likes to put it.  Was there room for improvement?  Of course...I could have been even more available to God for him to use...But again..that would be in an ideal world ...In my world  with my limitations...I did the best I could..

But what about now?  Spiritually things have decidedly cooled off.  And while that's true in some ways...for example; service, attendance at church, time spent studying...and time spent in prayer...yes. my "report card' shows a decline.  However I am working with a whole different deck of cards...not only a different hand.  And considering my life now?  My abilities and my limitations?  Am I doing my best?  I really do not know.  Honestly, I don't.  Like most people, my answer to that would vary with the situation...sometimes I do; and other times I don't.  Do I mourn the times of failure? I do.  Deeply.  And am I asking for forgiveness and asking God to change me?  Honestly, I do..but I probably could do  that more...Just like I need to spend some more dedicated time in prayer. 
 
So what happened n my life to cause this deep exhaustion...which I often accuse myself of as Laziness?  IS it?  How did it come to the point where I sit in a recliner or sleep all day?  Maybe this is all I can do also.  Is it?  I just feel like it's such a pathetic amount of "accomplishment" compared to other parts of my life.  But I am exhausted when I go to bed.  Yesterday I went to the grocery store. I didn't even walk through the store..I rode one of those infernal scooters.  And came home and slept for two hours...and then, after getting up for a couple of hours, went back to bed to sleep for another eleven hours.  And now, having been up for one hour, I feel tired again.

It is really hard for me to be this tired and not feel guilty.  All my life I've burnt the candle at both ends......and now even my match won't light.  Is this a way to live and finish a life?  To fizzle out?  To "fade away" as Neil Young put it?  Do I really have any choice?  I need to ask and trust God that he will help me to live life to MY fullest.  And yes, to do this...I'm going to need some help -most of all from God to give me the endurance I will need.  And to provide the help that I know my family won't.


Monday, November 14, 2011

Pain Management

I  woke  up at 3:00 AM--in horrific pain.  The kind of pain where you are driven to complete distraction and would do just about anything to be rid of it.  I took the maximum dose of morphine that I'm allowed--despite the fact that I do not like doing that...and despite the fact that I've taken that dose for the least three or four time slots where it has been necessary and permissibe ...And then once the back and neck pain slightly diminished--at least enough for my other pain to rise to the forefront and be noticeable...I had to rub my special pain concoction creme on my shoulders and elbow...desperately trying to get this monster under control.

Yesterday I attended a church business meeting and pot luck dinner following the church service.  Now for me to even make it through a church service is some kind of major victory...and it was only accomplished with -again - high doses of morphine.  Even with the medicine, I was close to tears when, mid business meeting, I implored someone to please leave early and drive me home.

For at least the last week, it seems that my life is one desperate attempt to manage my pain after another.  I've had to combine the two strongest pain drugs available at my highest allowable doses...just to keep  my head above water.  Obviously, if this continues there will be physical repercussions such as medical dependency to one or more medications.  I've fought this occurrence with every fiber of my being....for years....preferring to deal with pain than to deal with dependency.  But now, I feel that option closing up.  I'm tough.   I can endure more pain than anyone else I know.  Childbirth, hip dislocations...yeah they hurt.  But I didn't cry.  I didn't yell.

But this..

This pain is beyond comprehension.  Beyond endurance.  Beyond stubbornness.  And I feel my resolve crumbling.  I've discussed in past posts  ( http://cynthialottvogel.blogspot.com/2011/05/treatment-of-lifetime-of-pain.html ) the reasons that I am opposed to taking pain meds on a regular basis.  And just this week, I've already faced one of those reasons...in the face of my beloved pharmacy - who normally will do anything for me; turning coat and saying that my morphine dose was too high for reason and called the doctor to "confirm" the dosage.  Fortunately my doctor hung tough and told them "YES, that is what I ordered."  When pharmacists start playing cop...you know that this is just the beginning of the opposition and lack of comprehension you will face on every side.  People who can't fathom the depths of your pain. or understand that these drugs do NOT knock you flat on your back at these dosages.  Or approve of anyone even taking them in the first place...beginning to butt into your life to voice their opinion and to try to control what you can and can't do to control your agony.

I am as opposed to drug abuse--maybe more so--as the next person.  There are few things I hate more than a junkie's habit....and I especially hate it that they've taken a necessary treatment for many and turned it  into something suspect and less than honorable.  Folks, diabetics NEED to take insulin.  They depend on it.  I NEED to take pain meds to survive. I depend on them (NOT in the sense, at least yet, of physical dependence...but in the sense that my pain is so great I really believe that I would go mad or would literally suffer heart failure were it not managed).  My need is no less honorable than is the diabetic's.  It is equally out of my control -- due to an illness that is out of control.  I should NOT be culpable for the junkie's error or abuse.  I should not be punished for it or have my treatment options reduced or curtailed as a result of the sins of someone else.

I could rant on this for pages. But I will leave it at that.

Saturday, November 12, 2011

Sara Groves - Less Like Scars (Music Video)

  
This video is another one that just
may had to have been written about/by me.
Maybe you can relate to some of these feelings too...
or maybe you can't yet imagine a time \
when you could say this about yourself
....Hang in there...the Time will come...
There is One who heals.

Friday, November 11, 2011

A Significant Day: Veterans' Day 2011

What's significant about today? (Aside from the fact that it is comprised of all one digit.  See? 11/11/11, Cool, huh?)

1) Today is Veteran's Day.  And I must make a statement about this Veteran's Day 2011.  What is the deal with all the 9-11 stuff making its way into Veteran's Day?  As brave as those firemen and policemen were; as much as they sacrificed: THEY WERE NOT VETERANS.  They did not have to be brave day after day; year after year....They did not go through boot camp; They were not away from their families for years on foreign soil.  I know this will raise the ire of some of those who suffered through 9/11 and maybe that of the families who lost loved ones that horrible day...But those people HAVE their day for remembrance: September 11th of every year belongs to them.  (And I'm among the most of the teary eyed on Sept 11th...I sincerely understand your grief, coming from a community that lost many to that horrific day.)

But really: let Nov. 11th belong to those gentlemen from the World Wars, who still, many decades later must bear the lonely scars of war; to the Veterans of the Korean and Vietnam War who face their unique challenges - again, decades later....And to those who served and to those currently serving in Desert Storm and the Gulf War.  These men are true heros...Having faced unspeakable hardship and danger; often coming home to public disapproval and rebuke when they should have been honored for stepping up to the plate and going to the defense of this country.  They struggle with disabilities, both mental and physical due to the stresses put on their minds and bodies while serving---for year after lonely year.

These men and women are heroes.  And they deserve their own day to be honored as such.


2) Today is also my 22nd Wedding Anniversary.  I joked when we chose Veterans Day on which to be married, that soon I was about to become a veteran....(How little we know of the truth we speak in jest!)  The fact is, despite the fact that I'd lived almost three decades of hard life prior to marriage; I was very much a neophyte to relationship...having come out of almost a decade and a half of mental illness and  relational isolation.  And I would say that for the first 20ish years of marriage I did a pretty good job of managing that and other difficulties and in being a good wife.  My marriage-those of you who know my husband and me can attest to this- has borne some real and unique challenges....due to the disabilities of both of us and to character makeups--and especially due to the fact that my husband and I come from differing faith traditions and also have diverging beliefs even now; and also due to my deteriorating health.

We managed, despite financial challenges,and differing philosophies on child rearing; to raise a daughter, now 19--who is a person for whom I'm daily growing in admiration and respect. (She has not had an easy life either--maybe we should let her celebrate our special "Veteran's Day" as well!)  And yes, it has been at times, times of war and skirmishes...but overall, the good news is that we are still married; still a family.

So yes; we each have battle scars.  But we are  still together and still committed to our marriage after 22 years...something precious few people can attest to.

So from a Veteran of the battle that is and has been my life - to the Veterans of this country's wars prior and present; Have a Blessed Veterans' Day---as you remember your struggles and wounds and the wounds  and losses of your comrades; may you also remember the joys as well...and be proud of all you have endured for a cause higher than yourself.
Blessings to you!



Thursday, November 10, 2011

My Get Up and Go....Went!


the following is a post from December of 2009, posted here on "Treasures"--I found it today because I'm really struggling with negative symptoms lately....Have gained weight, slept a lot, "hung out" online - and well, not done much of anything due to an incredible soul-sucking lethargy that has swallowed me alive--chewed me up and spit me out, dead.  Of all of the symptoms of Schizophrenia, the "Negative Symptoms" are, for me, by far the hardest to deal with....I can be stark, raving crazy...as long as I have energy to burn and am "accomplishing things" I can deal with it...But this? This is for the birds.

Something that I have been struggling with, which is a common problem for people who suffer from schizophrenic disorders, is that I have very little "ambition." It is much easier for me to sit in my recliner with my laptop on my lap--not working mind you--just cruising around aimlessly online, than it is to get up and actually DO something. (Just ask my husband...Just getting me to find the energy to do the dishes is a major task!) Now, I am a person, when I have been well, who is VERY industrious and energetic. I would rise at 4:00 a.m. and by 8:00 a.m. would have accomplished what it would take my friends all day to do. I don't say this to brag; it's just the way God put me together.

So to find myself now, so apathetic and ....LIMP....is a terribly hard thing to accept. Now this does not mean that I am lazy. And this is what I need to remind myself of and somehow come grips with understanding: it is a symptom of my disease. When I lived in a group home years ago, I was disgusted with the fact that all of us just sat around smoking or laid in bed all the time. As I said, this was totally opposed to my historical makeup and I did not understand that this is a very big part of the "negative" symptomology of schizophrenia.

(Let me just explain to you "negative" and "positive" symptoms. Positive symptoms are the more blatant "crazy" things a schizophrenic experiences: hallucinations, hearing voices, paranoia, agitation, delusions. The Negative symptoms are things like apathy, blunted or "flat" affect ((facial expressiveness of emotion)), tiredness, etc..) Now part of the great difficulty that we people who share this diagnosis face is that the medication used to treat the positive symptoms also worsens the negative ones. And honestly, these can be harder to live with than the more dramatic things. This is a great part of the reason that people with mental illness are so noncompliant with their medication regime: because, it can seem that the medicine is actually making us worse....fogging our thinking; slowing our responses; detaching us from our emotions; deadening sexual interest and performance....and on and on.

I often still "beat myself up" for my lack of achievement in the past few years. I think to myself: this is the only life I have, why am wasting it? Surely God would not want me to let it slip through my fingers like this? But then it is SO HARD for me to convince myself to do anything; and often what I undertake goes unfinished. And the fact that I have physical illness, struggles, and pain only worsens this difficulty.

So I need to look at myself, my abilities and my energy levels and my physical challenges and somehow come up with realistic goals for myself and most of all, ask God what HIS goals are for me and for my days. I find, more than meeting accomplishment-types of goals, that God more often sets up for me relational appointments. These are encounters with people: online or in person where I get opportunities to share Him and His love...often through sharing my story. And it may be that, at least for now, this is where God would have me to be.

I have a friend, an elderly German woman, who upon rising each day, says to God, "Lord, use me today!" And He does. I have been trying to make that my prayer as well. LORD, USE ME TODAY...in any way that YOU see fit!

Tuesday, November 8, 2011

Announcement:

Recently I had the great privilege of being asked by ANS (ASSIST New Service) to write my story for their news service, after I'd written a letter to them in response to a plea for feedback from their readers.  Michael Ireland  - a journalist who works for ANS along with its founder Dan Wooding, a well-known journalist, whom I had the great privilege of meeting at the Greater Philadelphia Christian Writers' Conference (GPCWC) this past August - wrote me an email following the publication of my letter in his article and asked me to write my story for their email publication.  Dan  Wooding spoke at one of our assemblies there, I believe in the closing chapel meeting and enthralled us with his fascinating life and professional story.

Here is the link to my story (this is normally an online email subscription service -free- which goes out, I believe, all over the world.) Holding Fast to my Rock
And here is the link to the ANS website - ASSIST News Service - where you may also sign up for regular delivery of articles, bios , current events, and news from the Persecuted Church around the world.  Great Reads!

Where to Start?

 This is a repost from a different blog of mine...but it seemed appropriate to post today.  I was just talking to a friend about what it's like to live with paranoia and SZ.  How you can get the craziest ideas...and they seem to you to be totally logical and believable.  

And then how at the end of whatever mess  you've made as a result of believing them - you look at them and  you still have doubts; Was that just delusional? Was I being paranoid?  Or on other occasions: Did I just hallucinate that?

And you JUST DON'T KNOW.
And you will NEVER totally know....regardless of how many assurances you receive from others that you were just being crazy....YOU STILL WILL HAVE DOUBTS...FOREVER .
Here's the post:


How does one begin the end of an ending?
How does one begin a beginning  while in the middle?
How does one end an ending before it begins?
How does one go back to the beginning and totally skip the wrong ending?

Confused?

Well, if you aren’t then, you are the person whom this post was intended for.

I’m sorry for the confusion, hurt, and misunderstanding that my rotten, lousy paranoid schizophrenic brain has caused.  I would do anything to erase the damage of the past week and go back to the friendship we had before all this mess began.  It's really just awful when my “home base”—the default position that my mind will take— is one of paranoia.  It is horrific to think that I could have so misunderstood and doubted a wonderful a friend as you are and have been.  I’m so so so sorry for the hurt that I’ve caused you and for the mass confusion that my misinterpretation has caused.

Please understand that my misinterpretation of your emails, has caused me equal pain; that the evil whisper of illness causes me at least as much suffering as it does the object of my doubts.  I really did think that you were furious with me and wanted nothing more to do with me.   I was hurt and wounded to the core….never once considering that once again, I was made a fool of by this damnable disease.

And the worst part of it by far, is not that I get hurt or have to live with the doubts and pain…but that I have caused someone else–someone innocent–to suffer as a result also.  I was an idiot to marry and am an idiot to ever try to  burst through the suffocating barrier between me and everyone else by forming a friendship….because always., inevitably, someone innocent will get hurt…and invariably, my heart will go through the familiar paths of doubt, worry, fear, anger, and then complete isolation that are the consequences of my wrong thinking.  And these are the things that happen when I’m WELL….NOT psychotic!!!  These are the things that construct my daily life.

I’m not looking for pity …because if anyone deserves it , it  is the people that my illness twists up and spits out….the ones who’ve dared to give me their hearts.

And I’m still, despite the evil my mind does, not the offender here either.  I guess I’m a victim too.

Anyway—-I’m sorry, times a thousand, for doubting you and for thinking you capable of such unreasonable rage.

I would understand if you did what every single other friend I’ve had does and did…and that is to cut me off cold.  To protect yourself from such pain again. I don’t understand why people can’t just SEE if for what it is when it comes.  But then neither can I so it is not fair to wonder that.  The thoughts are so insidious and so basked in so ”reasonable” a doubt that every one always falls for it…me and everyone else.  …Never can see it for ILLNESS, for a twisted, sick perception…and then as such just label it and disarm it by identfying it.  Then it would  stop.  I would say “OH THAT is what it is…it’s not her or him or them….It’s schizophrenia.” and then I could put it aside on a shelf where it belongs.
Nope.  It  is insidious. Believeable. Sneaky.  and fools me and everyone else and we all get sucked into a vortex of anger and pain.

I’m so sorry …It’s all there is to say.

Sunday, November 6, 2011

A Smile in the Nick of Time





Farther Along

Farther along we’ll know all about it
Farther along we’ll understand why
Cheer up my brothers, live in the sunshine
We’ll understand this, all by and by

Tempted and tried, I wondered why
The good man died, the bad man thrives
And Jesus cries because he loves em’ both
We’re all cast-aways in need of ropes
Hangin’ on by the last threads of our hope
In a house of mirrors full of smoke
Confusing illusions I’ve seen

Where did I go wrong, I sang along
To every chorus of the song
That the devil wrote like a piper at the gates
Leading mice and men down to their fates
But some will courageously escape
The seductive voice with a heart of faith
While walkin’ that line back home

So much more to life than we’ve been told
It’s full of beauty that will unfold
And shine like you struck gold my wayward son
That deadweight burden weighs a ton
Go down into the river and let it run
And wash away all the things you’ve done
Forgiveness alright

Chorus

Still I get hard pressed on every side
Between the rock and a compromise
Like the truth and pack of lies fightin’ for my soul
And I’ve got no place left go
Cause I got changed by what I’ve been shown
More glory than the world has known
Keeps me ramblin’ on

Skipping like a calf loosed from its stall
I’m free to love once and for all
And even when I fall I’ll get back up
For the joy that overflows my cup
Heaven filled me with more than enough
Broke down my levee and my bluff
Let the flood wash me

And one day when the sky rolls back on us
Some rejoice and the others fuss
Cause every knee must bow and tongue confess
That the son of god is forever blessed
His is the kingdom, we’re the guests
So put your voice up to the test
Sing Lord, come soon!
 
My good friend Caryn-(one of the "good friends" you know online and have never met; but without whom you could not live and thrive.) saw my Facebook status today which went something like this: "Did you ever have a morning when you wanted to hang a sign over you that says :
Don't mess with me; I've had a BAAaaaad night!"

And she sent me a link to a blog called  "Fearfully-Wonderfully..." to a post by the name of this song and I just had to also post this song for you here as well as the lyrics (because if you're deaf like me; lyrics help an awful lot!).  Caryn is good at wiping a tear and bringing a smile just when you need it most...(and believe me, about five minutes ago, I was in sore need!
I hope if you're struggling today, that this song will bring you the encouragement--and the smile--that you need...and if you don't need it today, bookmark this page--and come back on the day when you do.  Blessings, Peeps.
(And thank you, girlfriend.)

Saturday, November 5, 2011

When is Medicine Absurd?

http://www.medicinenet.com/rheumatoid_arthritis_pictures_slideshow/article.htm
Yesterday I spent the day on a stretcher in the ER of a nearby hospital because when alerted by the throbbing in my temples and the perspiration that soaked my shirt, I took my blood pressure and found, despite the fact that I'm on very high doses of three BP medicines, that it was again 190/105.  As you may or may not  know; this is stroke territory, so my doctor's office told me when I called them to "Hie thee hence to an emergency room NOW."  so I did... quite unwillingly I must add.  I hate Emergency Rooms.  Hated working in one and hate even more to be a patient in one..and REALLY hate the $75 copay I will have to pay!

I was there for a "mere" 8 hours.  And they did a.b.s.o.l.u.t.e.l.y NOTHING for me.  M y  BP went down a bit by itself and eventually they released me with instructions to see my primary doctor immediately...which I did today.  And he added another (fourth) medicine and is sending me to some kidney specialists because as he said to me today "It's time to get serious about this and bring out the big guns."  I didn't realize this but the hormone which controls BP levels is produced in the kidney and when there is a problem there, the pressure rates can become uncontrolled , as  mine did about 5 or 6 months ago and has been ever since.

Today, I also confessed to my doc that I"ve had daily...and now, nonstop, headaches at the base of my skull - and that my guess was that it was the PA (psoriatic arthritis) compressing nerves and spine up there.  I also told him of the constant nausea and the numbness in my hands...He looked once more at my MRI results of a year ago and confirmed to me that this was indeed the case.  He ordered a new C-spine MRI as well as a brain MRI (I gather to check on the status of my brain stem where the damage is ominously close to).  So these are the next three appointments I'll have to make (4 if you count the neurologist which Dr. D said would also be necessary).

Honestly, I think it's time to address the  question that begs asking: When  does one simply say "Enough."???    If I lived in some less medically inclined or proficient country...even one like the UK or Canada with state-regulated medicine, I would have died a number of years ago.  There would either not be the technology, the speed , or the funding available to meet my huge demand on all of this over the past eleven years.  So does one finally intervene in the medical insanity of tail chasing that has become my life and put an end to it?  I'm NOT saying to commit suicide, but merely to put the matter into God's hands instead of wrenching my life from the jaws of Death and insisting on prolonging it.

I think that once I see the direction that this next MRI shows is occurring (which I can pretty much predict to you), then I think I will have to seriously consider this issue and maybe put a halt to the whole medical rat  race that has become my life.  Honestly, WHO in the world needs to have between 5 and 7 MD visits per month??? Copays alone - never MIND paying for the 20ish medicines I take - are ruining me financially.  It is for this reason that I'm so glad right now that I had cancelled my shoulder replacements and have decided on a mere elbow arthroscopy  instead, to clean up some of the damage there, temporarily.  Enough nonsense is enough.  My shoulders hurt ...but I can live with it; at least thus far.

Do you have any thoughts on this issue?  When does medicine become an absurdity?  It's  not like anything except for the random sinus infection....ever gets healed...It just becomes another chronic condition to be suffered with and monitored by doctors forever after.

The question then that begs asking is : Am I ready to stand before God  and give an accounting for my life???  THAT question will have to be asked and explored further...stay tuned....