Finding the Now

  It's another gorgeous day. Hot, Sunny. Hint of a breeze.
In another life I would be out roller blading; at the beach soaking in the rays; on a trail taking a hike; even just walking through our quaint tourist attraction of a Pocono town, enjoying the shops.

But I don't have another life--yet. So instead i sat on my deck for maybe 45 minutes in the sun, surrounded by my herbs and tomato plants, praying and then reading. Nice enough.

The trick is to not think of the things that belong in my past life; or in my fantasy life. The trick is to focus on the small pleasures that are accessible to me. Made some strawberry, yogurt frozen pops yesterday and eating one of those is a small pleasure that brings the taste of summer to my tongue....My mind wanders to days when I used to pick my own berries. But I have to put the brakes on that thought before the sadness that comes as a trailer to that thought arrives. No. Live in the present. In this moment.

I am chatting online with a Spark friend. She is one of God's gifts to me now.
Yesterday and this morning I spent a lot of time working on the manuscript to my book which I'd abandoned for too long. Who knows? Maybe I'll finish it yet.
And I"m reading a book on my Kindle about which the author himself contacted me in order to request that I write a review of his book on Amazon.
And one of these days -hopefully soon - I will go to visit my daughter's new apartment in Allentown.

So yeah. Keep it here. Keep it now....And when the here and now are too filled with pain to be endured,take your pain meds, seek respite in sleep. Watch a movie and live someone else's life for a while.

Acceptance is what i need. Acceptance that my life has changed, is changing, and it will not return to where it once was. Find peace in that.
And know that your God is here with you, just as certainly as he was back in "the day"...only now you know you need Him more.

Evening Gowns and Sandals

Put one foot  in front of the other.  Try not to think of the weight of the burden of my "lot" and the fact that my back is bowed down under the pressure of it.. Keep walking. Just keep walking.  Doesn't this place look familiar to me?  Haven't I been here before? ---several hundred times?? Duh.  no wonder---it's a circle I'm walking.  For what infringement I do not know...but there are a number of them that the powers that be could have chosen from.  My feet are killing me.

I want to go out to lunch.  I want to wear my sandals. 

For those of you who have seen Private Benjamin starring Goldie Hawn--a mischievous young girl from a well off family who finds herself in the Army...and frequently in trouble...and in this case has been required to walk a circle wearing full gear.  The line above is the thing that she speaks in the midst of her punishment.

For some reason I just relate to that scene right now.  I'm wearing some tough, heavy , painful gear...and I'm walking and walking and not getting anywhere.  I was in a mall last week, in between MD appointments in a mall wheelchair and looked at the baubles and glitzy clothes and shoes.  When my daughter was tiny...maybe two years old ...and we went to a mall, invariably she would seek out the ladies evening-wear section....and pick the most sparkly , decadent, revealing dress there and she would tug me over to admire it...and she always said the same thing. "Mommy, when I grow up, I'm gonna buy you this because you would look  beeeuutiful in it."

Well, as I wheeled amongst even ordinary clothes, they seemed to me to be as inappropriate as the sequined evening gown.  I would love to go out to lunch...and I would love to wear some strappy kind of clicky heels ---but of course in order to do that I'd have to find a new pair of feet to put them on.  Feet that didn't scream at the slightest touch.  The truth is that your lives don't fit me any more.  Any more than do the clothes my daughter promised me.  My life has shrunk and my body has expanded to make all of that impossible. 

You know what?  This is war.  My life is a war against the powers that seek to shoot me down. Against mindsets that could be my undoing.  Against madness that can also finish me off.  It's a war against pain. A war against self pity.  A war....everywhere I turn I see bullets and dire scenes of carnage.  And I recall my former life.

And I really miss those sandals.

A Trifle Askew

Tomorrow I see my psychiatrist....mainly for my medications...but we also talk a bit and since I do not see a therapist; she's it.  A couple of months ago, if you recall, I was quite unstable in my thinking....struggling with several ideas that were becoming so distracting and so large on my mental horizon, that I couldn't get away from them.  My doctor at that time wanted to admit me to the hospital to have me in a safe environment so that she could revamp my meds completely.  I refused.  She made a few adjustments to my doses and added a med...Then also I had to go off of the mood stabilizer and switch to a different one because it was causing my sodium levels to be so low that it was a danger to my life.

Things leveled out somewhat.  I was able to see that the ideas I'd had were most likely delusional. (that "most likely" is my addition for my benefit of the doubt or rather my doubting benefit).  However this past week two of these ideas burst through the gates I'd built around them to keep them safely contained.  One outburst occurred when I learned that in the Smart Phone --the iPhone--there is a new development called SIRI and this causes your conversations to be sent to Apple, supposedly for them to be able to better the technology.  I'm not buying that for a second.  Apple clearly has burst through all acceptable boundaries and is now blatantly spying on the users of the iPhone.  And who will that include?  Did you know that Apple has bought Blackberry and also Android??  Soon every cell phone will be a product of Apple.  Soon every cell phone will have SIRI-ously infringed upon our right to privacy. 

So of course, hearing that sent my Apple-cored fears into a huge spin, once again causing me to worry about Apple's plans to rule society...
Then a niggling fear buzzed around my head like a mosquito just waiting to impale me and suck the blood right from my brain.  This fear was from idea # 2.  I won't delineate it for you...just suffice it to say that I'm no longer as comfortable as I was.

Also in the past several months I've been having a phenomenon where a scene will play out in front of my eyes...on a narrower visual field than my normal sight can encompass.  Almost as though it were playing out on a strip of film that is passing before my eyes.  I will see scenes...mini dramas.  Sometimes bizarre.  Sometimes commonplace.  Sometimes heartbreaking.  And sometimes graphically violent.  Someone suggested these are scenes from old movies I'd seen.  And no, they aren't...They may possibly be the visuals from some long forgotten dreams having been stuck in the crevices of my brain, resurfacing....Or they may be glimpses into another dimension...an alternate reality taking place in the same space as I inhabit only invisible to the eyes of others.  These are particularly apparent at night before I go to sleep--and no, I am not partially asleep and dreaming.  They occur throughout the day also, I could be mid-conversation with someone and be interrupted by such a scene.  The scene will continue until I become aware that I'm fixed on it....... or until it becomes too horrible or distressing to continue to watch and I tear my eyes off of it...Then it's gone.

So will I tell all this to the doc tomorrow?  In all honesty, it's not likely.  What is she going to do about it,, shy of her initial idea to incarcerate me so as to guinea pig me into compliance with normalcy?  I suppose these "symptoms" are harmless, and will only serve to make me miserable. Probably no one else will even know if my life is hampered or disrupted internally; it will likely not make it's way up to the open air of observation.  Short of a few awkward conversations about Apple, they have not hampered me thus far in an observable manner.

And the Answer is.....

I'm beyond tired.  Today I left to go to my rheumatologist in NYC at 8:30 A,M and didn't get back until after 5:00.  Traffic was horrible and we went through a storm on the way home that was so violent I wasn't sure I'd ever make it home alive.  Although I enjoy the trip and I enjoy talking to the friend who takes me; these trips to NY are about all I can manage...and it will probably be Monday before I've recovered somewhat.

I kind of left you all on a cliff hanger with my last post.  I've done a lot of thinking and praying since then.  My thought processes were fairly complex...wrapping themselves around the book I've been reading and the thoughts there.  But my conclusion was pretty simple.:

My days and times are in God's hands.  It is from Him that I take my next breath. And when "my time" comes...whether I"m on a biologic or not--nothing will be able to change that appointment I have with God.  And visa versa...on a biologic or not;  if God wants me alive, then alive I shall be.  Therefore, given that; it would be foolish not to take a medicine I clearly need.

So there you have it.  My answer.  Call it courage.  Call it stupidity.  Call it faith...I'm not going to change my mind unless God should radically convince me other wise...but since I feel he was central in my line of thought, I don't foresee that happening.

My rheumy made a very true statement today.  He said he doesn't think my other doctors have any idea about the severity of my situation or the severity of inflammation and damage to my joints.  He's right.  They don't.  And neither does my husband.

It makes life harder.  But it is what it is.

RX for Disaster

I figured I would post and let you all know what is going on with this ridiculous body of mine.
I have just gotten over endocarditis- (an infected heart valve)--for which I spent a week in the hospital and have been giving myself intravenous antibiotics through a PICC line in my arm for the past 5 weeks.  I have one week left to go.  Because of the series of infections I've had, (the last of which was the endocarditis)--I was taken off of my Enbrel (the medicine I take via injection weekly for the Psoriatic Arthritis I have).  This medicine works by weakening the immune system --since the disease I have is  one of the auto-immune system, when my body attacks itself , destroying joints and organs.  And since it destroys the immune system I'm wide open to any germ that happens to pass by.  So, for now, I'm off the med.

And because I'm off both Methotrexate (MTX) and Enbrel now, my arthritis is having a party.  My hands and ankles and feet are very swollen.  Every joint in my body is screaming.  And in the morning I'm so stiff and in so much pain that I can't move but NEED to move in order to begin diminishing the stiffness.

My spine is very much affected by this disease also.  I have Psoriatic Spondylitis which is similar to Ankylosing Spondylitis except that in the latter , the disks of the spine fuse from the bottom up.  In Psoriatic Spondylitis, the joints of the spine fuse in random order.  RIght now I have three vertebrae in my neck which are fused and I have 5 or 6 of my lumbar spine fused. I've never yet had an MRI of my T-Spine, so I'm not sure what damage there is in the thoracic spine.  My rheumatologists had all told me that the arthritis in my spine was likely from Osteoarthritis and that meds like Enbrel wouldn't help it.  However, as I'd suspected, the culprit seems again to be PsA, because amazingly, wonderfully, the Enbrel reduced the pain I've suffered with for YEARS down to a dull roar.  If the med did nothing else but help that pain, to me it would be worth all the risk of taking it.

So that leads us to the decision I have to make.
Do I continue taking the biologic drugs (like Enbrel) or do I not, and let the PsA continue to destroy my body?  Now, there is a note here worthy of consideration.  The biologics do NOT cure PsA...they do not even stop the damage to the joints.  But they do reduce symptoms and they are thought to maybe slow the disease process down.  My Infectious Disease (ID ) doctor and my rheumy have both cautioned me that the biologics can and perhaps may kill me....as it would be so easy for me to pick up an infection, either bacterial or viral, have it go into my artificial hip joints, my heart (which is susceptible to it because of a congenital heart defect I have), or into my blood (sepsis)...and that would be the end of me.

I have told the docs that it is my intention to keep taking the drugs. You may think that is insane.  But then you have never been in the pain I'm in.  And my body is becoming so limited  and I'm losing so much range of motion, that I can do very little except sit in my recliner or lie in my hospital bed.  In horrible, unrelenting pain.

My daughter is opposed to my decision. She wants me alive at all costs, in any condition. I've told her that it will not be long until I will need a nursing home (which we cannot afford) or else she will have to feed, change my clothes and toilet me.  I seriously think that death is a preferable state.  There are others who advocate for life in all cases at any cost.  I am for life too. A TOLERABLE life.  And if I'm not going to have that, then I believe in the right to choose my treatment....even if it carries a risk of death.  This disease can kill all by itself.  It causes cardiac and pulmonary damage among other things.  But even if it does not kill--it robs of life.  It steals from life: pleasure, freedom, independence, freedom from pain, mobility, finances. and a host of other things.

If I can have a short time....months or years that are relatively free of pain...it would be worth it to me--I would prefer that to another 15-20 years of unrelenting agony.  You must realize that I'm choosing LIFE. I'm not choosing death. I'm choosing life over a living death.

Then there comes another problem. I currently need both of my shoulders and both of my elbows to be replaced.  The surgeries carry huge risks of infection for me.  And not only that--they carry immense risk of permanent senility or confusion.  I've experienced that following my hip surgeries and it has become more severe and longer lasting each time.  There is quite a good chance that it will be permanent following any one of these impending surgeries.

Sounds like I should forego the surgeries, right?  But I honestly do not know how I will live withoiut the use of my arms. I do not know how I will endure that pain

I don't know.

you know, I just read this whole post and I thought to myself, "What does GOD want you to do?" I KNOW what I want to do....but I'm not so certain about what God wants.  I've got to pray about this and get into the Word for some of these answers.  And I will do that before I make a definite decision.

The Crux of Suffering

Yesterday I watched on Netflix a movie about St John of the Cross, (for those of you unfamiliar with his name, he was the Carmelite priest who wrote the book famous by it's title, not so much for its contents these days: "The Dark Night of the Soul"...  He joined St Teresa of Avila in her reform of the nunneries and the monasteries to turn the tide from an ever increasing worldliness to a religion once more centered on the cross of Christ.  He was imprisoned and eventually martyred for his efforts.

And then today, I began to read a book called A Place for Weakness, Preparing yourself for Suffering.  Now neither of these may appeal to your sensibilities or have a place on your "to read" list...and that, my friends is exactly my point.  Who among us, especially in these days where the richest and most beautiful are considered to be the ones most "blessed by God," would desire to consider the topic of suffering or of the persecution of past saints and often, their martyrdom?  We, in our American culture and those also in other wealthy countries, treasure fun, laughter, "toys," the latest gadgets and shun the ideas of sickness and death.  These things make us uncomfortable, not only in experience but in philosophy. We don't even want to think of them.

When is the last time you went to a funeral of someone other than a close friend or family member?  Probably not lately.  The idea of death makes us so uncomfortable that we do not think about it or surround ourselves with it unless absolutely forced to do so.

Those who suffer are often (sometimes secretly) considered by others to be cursed.  There is the unspoken (hopefully unspoken) assumption of some sin which has caused their distress.  There are the condemning suspicions of a lack of faith.  In other words, "If a person is suffering; then there is something wrong."  Suffering is viewed as an anomaly -- something that simply should not be .  And to a degree, that is true.  Our sense of appallment comes from the creation when man was surrounded by a perfect environment, one that did not include human death or suffering....It was how God intended it to be...however, there came a serpentine whisper, a mouthful of fruit and the "plan was spoiled."  WAS IT???

No, the plan was not spoiled ...that was simply the beginning of the story.  The story is that of God's restoration of man to the state of immortality and delight that God envisioned for us from the beginning.  And that whole "Story"swung on a crux.  (in other words, :a cross.).  The cross is the crux of the story.  And for this chapter in the carrying out of man's redemption: suffering is the norm.  It is part of the experience of mankind.   Is it to be mourned?  Certainly.  Mourning is much more a fit response to it than is disregard. David in the Psalms poured out his sadness and woes into the listening ears of a loving, sympathetic God.

But sympathy was not enough for God.  He also desired to be empathetic as well.  He longed to identify with mankind so that he could comfort us in our pain....but BIGGER THAN THAT: God's suffering is the ANSWER ; the SOLUTION to our pain and to the death that awaits each of us.  The cross once and for all eliminated death--the kind of death that is forever--from man's necessary experience.  Will our bodies die?  Yes.  Will they be remade and perfected?  Yes.  Will this be the case for everyone who reads this article?  I would love to say "yes" to that as well, but the fact remains ,just as the Bible says, "To (some) the cross is foolishness."  In other words, you ain't buyin' it.  And that is sad, but a fact.

But I do not want to be swayed from my point.
Jesus asked his disciples, when they sought worldly renown and honor, "Are you able to drink the cup that I drink?"  Foolishly they answered, "Yes, we will."  And Jesus told them they didn't know what they were agreeing to do.  But we all, in this world, must to some degree or another, share in the cup of suffering.  And we will all one day drink the cup of death.  This is not an aberration or a flaw in the story God is working out on this earth.  It is not a mistake.  The road to life is one of suffering.  (notice I said the road to life is one of suffering.  Not "the road of life is one of suffering".)  In order to gain life, we must do so by means of the cross.  And this does not only mean the normal sufferings of the human condition.  It means sometimes, as  John of the Cross discovered, poverty, pain , and brutal death.

What is to be our response to this suffering?  Well, our response should be paradoxical.  On one hand we are to mourn it.  It is after all, not the perfect condition God built into mankind to desire.  And to go through pain and death, whether our own or those of loved ones, well, it hurts.  And God doesn't wish us to deny our humanity and to pretend that it doesn't.  In fact, (here comes that empathy), Jesus knows intimately what pain feels like.  He knew loneliness.  He knew mourning and loss.  He knew the treachery of friends.  And he is here with us --near to us-- in our pain.

However, there is the flip side of our response.  We are to accept pain...not only our own but the pain of others.....as part of the road that we must walk.  The Calvary Road, if you will.  Our pain teaches us to identify with Jesus, just as his pain helped him to identify with us.  He identified with our human nature...and the cross allows us to share in his divine nature. Do  not berate others for their suffering.  Do not avoid them.  If their friend or family member dies,  accompany them to the funeral; share in their loss.  This is the true fellowship of the saints.  It is NOT gathering for a pot luck dinner after church....It is to bear each other's burdens.  And to place our own wishes, our own comforts, squarely on the cross.

Night time Terrors

http://www.freakingnews.com/Nightmare-Pictures--57.asp

This is the first time in a while now that I've had an entirely sleepless night...and that's because my routine was interrupted.  And it's also because I slept too much during the day today.  I did that out of boredom but mostly I did it because I felt awful physically.

And now, tonight, I'm wide awake...and not feeling so hot mentally.  I've got a horrible feeling of impending doom...like something awful is about to happen. 
Years ago, on  nights like this...and in fact, in every single night, I was consumed with worries and fears and such anxiety that I felt ill in my body.....to such a degree that I was desperate for a solution.  And I found the solution...it was in my own history.  I looked back over my life and I saw with fresh eyes how God had been there, all throughout my past, in every hardship, every catastrophe: providing and protecting.  And I'd gotten through every situation intact. 

All through Scripture God adjured Israel to remember; to remember the character of their God; to recall how he'd miraculously worked throughout their history to bring them, an unlikely ragtag of a people --to military exploits and through miraculous provision of food, water and clothing through a 40 long trip in the desert...REMEMBER.
Remember Cynthia, who your God is.
Remember the ways he's provided...protected...even against your own will...
Recall how he's called you.
Remember he's promised to finish the work he began in you.
Remember that he is your destination in Glory when this life is done and put aside.

So whatever is coming.  Whatever happens.  My God is good.  My God loves me.  My God will be my strength and my song.  My God will get me through.

"Fear not; I am with you"

Three Resolutions

Yesterday was a complete wash.
If you read the post before this one, you will see that I was confused, discouraged, and feeling like I was once more losing my grip.
Well, I won't go down without a fight.  I'm not really sure how to fight. Maybe I need to do some physical exercise.  I'm sure that would help....just a matter of finding something I can do that won't cause excruciating pain or worse, cause my hip to pop out.  I so much wish I had a PT person right about now.  Somewhere I must have that folder of exercises I did when my hips were new.  Do I?  I'm not sure if  I do.  Well, I know the basic "rules"...I should be able to assess an exercise and know if it breaks the rules or not.  I've just been "belly  up" and have decided that there is nothing I can do; and I know that that is a cop out.  YES.  I am extremely limited in what I can do (when you add in the fact that both arms are a notch above useless)--but have I gone through the list of Spark exercises and made a list of what I can and can't do??

NO.

Today I will do that.

Today, also, I will cease and desist in the area of face-stuffage.  I went shopping yesterday and in a pity fit bought a bunch of garbage masquerading as food and well, now it's gone.  So today, I know what I need to do.  And I will do it.

And most importantly, resolution # 3:
I will fall on my face before God today and ask him to PLEASE give me a glimmer of light; a glimpse of direction; a whisper of information; and a heart of courage.

So no, do not think that I've completely gone over the edge of despair and that I've given up.
I'm not there: yet.

Whoa!

tiredness.  From doing nothing.  Nothing today and nothing tomorrow.  Can God possibly want this?  Can this possibly be pleasing Him?
movies.  Like a movie viewer is placed over my eyes and I can't get it off.  I'm compelled to watch mini-dramas unfold...soundless.  just images.  Sometimes I can get the gist of what is going on--and other times can't.
aware- of my mental disintegration.  I listen to my "peers" and read what they write and my writing looks like preschool work next to post grad.  What happened to my brain?
The sadness of this illness has gripped me.

My husband thinks I'm useless.
Maybe I am.

I wish --so much--that I knew a person with SZ...someone I could be friends with who would completely understand what this is like. This Elmers glue that has replaced my blood.  These parasites eating away at my brain.  I have friends like that online.  But I need a 3 D friend.

Today I saw a man in the grocery store who looked like he may have SZ.  I thought it over and then decided you can't just go up to a person and say, "scuse me, but do you have schizophrenia?"
If he didn't --he'd be, pissed.  And if he did.  He'd still be pissed.  No one likes to be spotted out of a crowd and toe-tagged

My daughter needs a mom. A real mom.  A competent mom who could hop into her car and drive up there to help her move.
My husband needs a wife.  A real wife.  A competent wife who could cook him dinner and carry on a conversation.
my mom and dad need a daughter.  a daughter who remembers to send cards and buy gifts on birthdays.

I am a failure to each of my roles.

For how long can this go on?
how long can a person sit in her room and do NOTHING and contribute NOTHING to her world before the axe falls and she is ousted?
Why is God lingering?  What is he waiting for?

self pity.
Is nauseating.  I smell it on my breath.  But my feelings are sincere. Not woe is me. But "Whoa! Is this me???"

I feel the suck-tion of the whirlpool swirling down the drain.  Call it a drain.  Call it a rabbit hole.  It is what it is....and I know it.

Privileged Pain

Yeah, I'm back again.   I had something more to say.

Months ago, I prayed for a young pastor named Matt Chandler who was going through a catastrophic illness.  Sara Frankl first mentioned him and soon the internet was reverberating with prayer requests from his family and oceans of support by those who love him or by those who , like me, jumped on a band wagon of prayer to help someone who was in desperate need.

Tonight I was listening to a podcast from the Village Church which happens to be Chandler's church in Dallas....and I got curious enough to want to fill in the blanks about what had happened to him.  So Google to the rescue.  I came across an article in Relevant Magazine (http://www.relevantmagazine.com/god/church/features/24107-the-tested-faith-of-matt-chandler ) which had a quote in it that  hit me between the eyes. As I read of Matt's brain tumor (malignant) and surgery and his ongoing chemotherapy, there was a statement he made which sounded quite like some statements I've made in the past,....which maybe I need to be reminded of now, in these days of unrelenting pain. Here it is:

 “There’s this part of me that’s so grateful that the Lord counted me worthy for this.”  

When I heard this statement two verses pulled at my consciousness.  Here they are:

For you have been given not only the privilege of trusting in Christ but also the privilege of suffering for him.  Philippians 1:29


The apostles left the high council rejoicing that God had counted them worthy to suffer disgrace for the name of Jesus. Acts 5:41

There's an ad that is frequently on my Facebook page that says this : "RA is a tough disease...and it takes tough people to suffer with it,"

What is all this saying?  God has given me a long and hard row to hoe....And it is taking the very last drop of endurance and strength that I have to survive it...let alone to glorify Him in it.  The Bible says "A bruised reed he will not break " or "a smouldering wick he will not snuff out,"...There were years...many of them when I was bruised and smouldering...They weren't easy years...Yet God did not cotton pad my path....Through those years I think God fired my clay in the kiln of suffering so that in these days...when the suffering is pouring heavy and wet like a flood around me...my container is solid and finished to be able to hold this adversity like a cup.  And from this cup, He invites me to "Drink, this is my blood poured out for you."  As I drink the cup of His affliction, it becomes my own....part of my own flesh and blood.  His torment has melded with mine and I am uniquely privileged to share it.   I am honored that He considers me strong enough to continue to praise Him and not to disgrace Him by the way that I handle my pain.

And so, Cynthia, do not complain.  Do not rail at God for giving you this burden.  There is more at stake here than you know, and you have been called to play a role in God's unfolding drama.  So play it with:  Grace. Honor.  Thanksgiving.  Joy.
I will admit and confess that I am not always Christlike in how I endure pain.  And even today you heard me tell Him, :"OK cut it out already. That is enough."

I am not worthy to unloose His sandals....but He has counted me worthy to share His cup.  Sometimes I wonder why.  I mean, I do not have a huge ministry like Joni E. Tada.  I am not the spokeswoman for some disease or cause. I have not raised money for a cure.  I haven't spoken to groups of people.  All I do is suffer, write this blog and inhabit this house.  Is that all He is calling me to do?  Is He calling me to a deeper holiness to make a spectacle of hell?  If so, I've probably failed that assignment big time.  I do not know His reasons.  All I know is : HE HAS A REASON.
And I am honored that he has chosen me to be a player in this act, this scene...He has chosen me

Just as the crocus  endures frozen ground and frosty nights...it blooms and it brings us--straight from the hand of God, a message of Hope.  Spring is just around the corner.---So I endure my pain to bring you all HOPE...our redemption is drawing nearer.  This pain-filled world will be only a dim memory soon.

Crawling through the Moments

I don't know what to say.  I know I owe you all a new post. Whatever is going on in my life pales in the face of the pain with which I approach it.  I hurt from the top of my head to the soles of my feet.  I think of my life stretching in front of me...an ocean of pain through which I must swim in order to get to the promises of the other side.

I know.  The good news is I do not go alone.
I know.  The good news is that the sharks in these depths cannot touch me.

But I also know that there will likely not be a single minute for the rest of my life--aside from times spent under general anesthesia--where I will not be conscious of severe pain.

I don' t want that.

Duh. Talk about stating the obvious.  But no, I really mean it; I do not want this pain and I KNOW I have no choice in the matter.  The only choice I have is to pursue the pain with Biologic Drugs and to pray, 1) that they alleviate my pain. and 2) if they do not alleviate it, that they will quickly kill me.

My daughter disagrees with this decision of mine.  But I do not have it in me to agree to more years of suffering and horrific disability just to extend my life.  She doesn't know what it is she is asking of me....nor does she understand what will happen if I become completely disabled and dependent on her for everything.  I think that then, she will change her tune

I shudder at the thought of another night like last night...but I know it's coming.  My hands and ankles are swollen huge.  There is not one joint in me that does not hurt and a good many tendons also hurt.  The minutes will crawl...each one of them is a chapter in an endless book.  Each one of them is a torture session in a North Korean POW camp.  Morning will crawl on its hands and knees to get here...and it will get here only  to find that it forgot to bring relief.

There is no loneliness like the aloneness of those in severe pain.

Please my friend, pray for me.

I'm tired.  sad.  alone.

To Live or Die?

I was just looking back over some old blogs and encountered this one.  I thought maybe that there might be someone out there right now , who is needing to read this.  Or maybe you know of someone who is struggling with life and thinking of death....Maybe show this to them...Definitely pray for them, and if they have made any threats about suicide or have a plan, IMMEDIATELY seek professional help.  Call 911 or a Crisis Hotline.  

This was originally published on Dec 31st, 2010

 

I read a blog post of some lonely, sad young woman somewhere in this world...who was counting out her pills and planning her next move , early this morning in the wee hours. I commented to her urging her, of course to try to just get through the night without any rash action. Thought about my overt helplessness in the situation, but then began to pray for her. Not a position of powerlessness but one of power.

I pray she made it through the night.

Reading her post took me back to similar nights...nights when I could no longer tolerate my mental agony, and not only counted those death-capsules, but swallowed them....And the miracles God worked to save me...literally snatch me from the very grave's edge and bring me back. At the time, I was angry about that: furious. I remember they had to put restraints on my wrists as, even in my stupor, I struggled to pull the ventilator tubes from my mouth ....Determined to die. And so angry at being thwarted.

Things did not improve quickly after that.

It really took several years before I was not looking for any opportunity to exit this planet. But at the same time, I had this helpless sense, that no matter what I did, God would not allow it. That for some reason he had me here and I was "doomed" to stay and carry out that purpose.

Now, even all these years later, I'm not really sure what that purpose was specifically...It was probably a combination of lots of things he wanted me to do. And things he wanted me to become. I was not ready for heaven...and not qualified for hell. I was his child. And so I had to suffer through the hell of some years before I could get to the point where I could look back at that rescue with any kind of gratitude.

And things got better.

And then things got worse.

And now things are once more on the upswing.

Nothing in life is static. If you feel one way one moment and think it's not tolerable, wait five minutes, and it will change! Even things that are persistent like despair or deep depression...are ultimately temporary. The thing about depression though, is that, from the vantage point of being inside of it; it looks interminable. hopeless. But that is a lie of your emotions.

The other lie is that the only escape is death. THAT particular lie is, I believe, straight from the pit of hell. The enemy is a murderer and a destroyer. How best to accomplish that task but to convince us to take ourselves 'Out' for him? To make US to the dirty work. But later, when we come back out on the other side of that dark cloud...and look back with a shudder, we are amazed that we could have been so convinced to do such a foolish thing; To think that walking into that dark night would really IMPROVE things for us at all! It is only through LIFE that we have any hope of salvation...and here I am not really talking about God's salvation,...but salvation from death and despair.

I mean, really, how do you KNOW that after death there will be nothing?
I tried really hard to convince myself of this.
Wanted with all my heart to believe it.
But that is another of the Deceiver's handy dandy lies.

Now, years later, I've experienced and met up with the furies of hell. with spirits so malevolent that the thought of them too, brings shudders. I have no doubt that such a place exists...and our hell is NOT on this earth, as we conveniently try to believe.

I'm not trying to frighten or terrify anyone into staying alive...although if that works, so be it.
But it is something to be seriously weighed and SERIOUSLY considered. How do you KNOW what you'll be facing; where you'll be going should you choose that route? It's really a high stakes gamble...and not one you can change your mind about.

Why risk all of eternity because of the misery of a few minutes, hours or even years??
It's really craziness to do that. And the enemy is really good at obscuring Truth from our minds in times of distress. Better to admit, "OKay, I am not at my most rational right now...I should not make any eternal decisions in this moment. " and wait. Wait a day or a year....and think REALLY carefully.

Honestly, suicide does not make any kind of sense.
that from a person who's tried it more times than I care to admit.

But I'll bet my 18 year old daughter is glad that in those years before her birth, I did not succeed at my exit plans. For that reason alone my staying and sticking out these 20+ more years has been worth a few nights of misery....

Look at that agony as labor pains. Pains that will birth in new life ...and fresh starts ...and new hope. NO one would kill themselves because childbirth hurts. They are focused on the product of that pain..and that makes it so much more worth it.

ZOE -- חַיִּים-- Chayyim

Zoe: Life (in Greek)
Jesus said , "I have come that you may have life--and have it more abundantly"
I got to thinking about my last post.  The enemy wants us (me) dead. Dead spiritually and dead physically.  The Bible says he was a liar and a murderer from the beginning.  Perhaps, I've been thinking, I have fallen for the lie, and lost out on the life.  I'm not speaking in terms of my eternal disposition....but about the one here on earth.  It is entirely consistent to say that the lie of the enemy is to deceive us to believe that death is preferable to life.  Spiritually or physically....he'll take either one and preferably both.

Jesus says that his whole purpose is Zoe.

So then should we not reject every thing in our lives that leads us to death and embrace what leads to life?  That includes a whole bevy of things; the way we eat.  exercise.  And more importantly, analyzing our lives to pick out the "deadening" or "death-dealing" factors in them and to be rid of them.  To reject them...
There is honestly, not much about my life now that makes me want to live.  Honestly, the quicker death comes, the better.
But, that outlook, that condition, is simply wrong.  It is antithetical to all the Jesus came for.

This week a friend from a period in my life of about 14 years ago got in touch with me via acebook....and we ended up talking on the phone.   She suffers from a rare disease resulting from neurological damage. It is a painful disease and a crippling one.  She was on huge amounts of morphine, sleeping her life away ...and was, quite literally, going to die had things continued as they were.  But in an act of desperation--she made a courageous move in an effort to maintain and enhance her life.  She moved down South to a community, where literally--everything was with in reach and accessible to her.  She left every"death-dealing"situation and went, seeking life.

And my friend.?  She is once more the exuberant lady I recalled knowing, doing well physically and filled with hope about her future.
From my vantage point, well, I know the courage that such a move took.  The grip of Thanatos is a strong one...and to break free takes supernatural courage and strength.

For a long time friends of mine have encouraged me to make such a move. I am in a dive for death right now.  And it may be that there is nothing that can be done to make a huge change in that direction.  But is it right to go willingly, without resistance?  Is it right to stay where I am being slain daily and the hope in me is being trampled and is shriveling to nothing?  And possibly, her move, is not, nor should be, my move.  But what IS my move?  What would a move toward life look like for me?

This is something that needs consideration.  It needs prayer.  It needs some honesty.  And it will need a whole heap  of courage.

L'chaim

Thanatos

I think a lot about my death.
I guess that's kind of weird...but maybe not.  I spent over 15 years greatly desiring to die and attempted to do so at least 4 times over the years; and all the time when I wasn't trying to die, I was thinking about it.  Only, back then, I didn't think of heaven or of me going there or not.  I didn't really think about hell either.  I wasn't worried that, if I died, I might go there.  I kind of thought that, well, "I'm a child of God, so I won't go to hell.  But neither do I deserve nor want to go to Heaven, so maybe I will just go into the ground and rot into nothingness.  And that was what I wanted.  It seemed to me that life--any kind of life--even life in Heaven--was inherently tainted with misery and I didn't want any of it.  Also I was so completely drained of energy and motivation that the thought of  having to continue to expend effort in Heaven was completely unacceptable.  No, the only peace to be found, was in the ground with the worms.

There was a brief time when death seemed further away...That was from 1989-2000.  Eleven years.  Years when I was a newlywed and then a young mom.  Years when I worked hard physically and for the first time, enjoyed being in my body...Rollerblading and walking every morning...And then--completely unexpectedly-- a horrible case of mycoplasmic pneumonia struck.  And I encountered Death once again, up close and personal....but wasn't really too aware of its proximity at the time.  And the "gift" that the pneumonia left with me was a horrible case of asthma.  And suddenly, my life changed.  I was no longer a healthy young woman but a sick young woman.  I had repeated pneumonias, asthma exacerbations. and steroid myopathy  (severe muscle destruction from the steroids)...

During the next 12 years, (up to the present), I encountered Death up close and personal... Endocarditis (twice), MRSA (twice), and encephela-spinal meningitis all took turns at bringing me to the brink.  And then about 5 years ago., Psoriatic Arthritis entered --not so much to kill me--as to make my life a living hell.  And now, because of the damage that my arthritis meds do to my immune system, I'm wide open to life-threatening infection.

So now, especially when I'm approaching my 50th year, Death is again heavy on my mind.  I would so much like to be able to say, like Paul, "I've run the race--my life was not in vain."  I know that the reason that God has saved me so many many times from the grave was because I was not yet ready for Heaven....I still had road to travel in the pursuit of holiness...and God knows, I still do.  As tired as I am of struggling to get through a day, I know that I don't want to end this life until I've completed what work God has set for me to do. I know that when the moment comes for me to leave this body, I will go willingly and joyfully.

 So if you are coming to my funeral, be warned: you are coming to a party.
 "Free at last, Free at last, Thank God, I am Free at last!"