Goodbye

Well, once again I have been reminded of the frailty of man...and it has been once more clear that the Lord is my only friend.  He is the only friend who will not  run when the going gets tough.  He is the one who gave me all these difficulties and challenges in my life....so it makes sense that he has the guts to stick by me in the midst of them.

So many friends (actually, every single friend I've ever had) has at some point come to me and said,  "Your life is too intense for me.  There is too much drama. I need to back out."  I have literally heard those words twenty times.....sometimes coming from the mouths of my very best friends.   And those words hurt  And the injustice of them hurts even more.  God gave me the road to walk that I walk.  And yes, my life does get intense.  But I cannot leave myself.  I cannot say "Scuse me God, but I can't handle this so could you give it to someone else please?"  And once again, there is no one to walk to road with me. Once again I am completely alone except for God.

Maybe it is my own fault.  Maybe I should have learned, twenty friends ago that I am simply unfriendable. That there is  no one on this earth tough enough to walk with me in friendship. It would have saved me many broken hearts if I'd learned that back then.  Well, as of now, this heart is closed.I am going to have to learn that Jesus is the lover of  my soul and no one else.  It takes someone special to befriend a physically challenged person.   It takes some one even more special to befriend  a person with schizophrenia. But the person does not exist who can befriend someone with both of those challenges.  It's a fact.  I just have to get myself to believe it and deal with it. And if you are one of those friends who has dumped me.....don't feel bad.  You're in good company.  I had some very good friends.....and every single one of them is gone.

Maybe God really just wants to draw close to me and walk me through some of this incredibly difficult stuff by holding hard and fast onto him and him alone.  I have needs.  All kinds of needs and honestly I don't  know how they are going to get met.  But maybe God wants me to know that HE is the supplier of all my needs.  "There is a friend who sticks closer than a brother"  That verse bears some irony too because my brother is among those who have ditched me He has not spoken to me in 20 years.

The burden Jesus bore in Gethsemane was more than his friends could deal with too....and they all deserted him ..I know that pain.  I may not know the pain of being beaten or nailed to a cross but I know the pain of every single friend turning tail and running.

Jesus it's just you and me from here on out. I will no longer ever rely on a friend.  Ever.  There is a  verse, "Jesus did not trust his heart to them because he knew what was in the heart of men."  I''m kind of in that spot too.  I've got to stop opening my heart up and letting people come in and wreak havoc. I must be as wise as a viper and as harmless as a dove. I have to recognize the limitations of men and stop looking to them to meet the needs of my heart and soul.  And for the physical needs? God will have to provide a way there too.

So for now?  I'm so done.

the Crazies

All day long I've struggled to stay focused enough to do what I need to do.  Dinner was a disaster .  My knitting project (a bolster pillow for friends who are marrying on Sunday) is full of errors...because my thoughts are full of trailers.  Scenes of the coming attraction.  Only you are too tired from watching tv all day so you are on the verge of sleep and your thoughts veer right and left like a drunken truck driver into those wild areas of the nether worlds that precede sleep.  Only thing is...I'm not asleep  Nor am I tired.  And the movies I've watched all day are not on a screen.  My mind is on a bender without benefit of booze...hallucinogenic drugs make me trip and veer only, yeah.  I took no drugs.

so what?  What next?
Yes, I'm taking my medicine...the maximum dose of the only psychotropic that has ever helped me .At all.  Now suddenly it has failed me.  Do I just settle back and enjoy the movies? But what happens when I burn the house down because of distraction??  What happens when the delusionl thinking starts?  When the paranoia and terror begin?  What happens when my words stop adding up into any kind of sense.  see a person can't really stay comfortably insane.  Because that is a contradiction in terms.

There are two drugs, new ones, that I haven't tried. Today..no yesterday,...my psychiatrist told me a wonderful story of how Saphris snatched a very sick lady from the jaws of madness only to spit on her with an allergic reaction.  The other drug, Latuda, I've heard some good things about. Unfortunately both are new drugs and costly.  Even so, it's tempting to try them but what about having to go into the hospital to make the switch?  My husband is not for it.  It wasn't his idea.  So therefore he has negative feelings about it.

I don't know.  I'm inclined to do nothing.  And wait to see what happens.  Of course then I run a very big risk of losing all touch with reality. And that.  Is  a very bad idea.

Shuddering Thoughts

Last night I saw a truck back out of our driveway with lightning speed and disappear down the road....soundlessly.  The lack of sound did not come to me until later upon recall.  At the time I did not question that what I saw was real.

However, I then heard car doors slamming in my driveway.  Steps on my deck, voices outside my window.  When, heart pounding, I looked out the window into the darkness, my driveway lie silent and deserted in the moonlight.  Terror beset me.  My thoughts exploded with fearful surmises.  I tried to calm myself.  I said, "Cynthia, this is exactly the same kind of thing that was happening prior to your hospitalization last July."  But it did no good.  Fear was resident on the throne in my heart.

So I called Crisis.  Who else to call at 11:30pm?  The lady talked to me.  She made sense.  And she took the threats seriously....enough to suggest I call the police just to tell them my concerns. In the end, I felt better enough to go to sleep.

Today, visuals disturbed my knitting efforts.  I kept pulling myself away from the engineless cabooses of thought and tried to focus on the knitting and purling but it was a lost cause. Movies paraded before my eyes....silver herrings of thoughts flashed through my mind's corridors tripping me like strung wires at shoe level.

So what is going on?  Are my mental screws loosening?  Am I about to burst forth into alliteration and allegory?  I feel like I'm being stalked.  And that my capture is inevitable...just a matter of time and I'll be hoisted into foreign quarters where the walls are comprised of impermeable shadows.And escape is not guaranteed....because you see it seems that my "go to" medication is becoming ineffective and that is very bad news because none of the others did anything aside from making me fat.  What can that mean? I shudder to think.

Ups and Downs.

First of all, I just want to report that with a few more visitors, we will hit the 50,000 visitor mark and that is just astounding to me.  Thank you to all of you who have faithfully stood by and read of my ups and downs.  I'm humbled that anyone would have any interest at all in what I write.

I also want to apologize.  My last couple of posts have been real downers.  Honestly I haven't been doing really well.  I've been suffering some visual hallucinations, thought disorder, and just general depression.  My case worker, after she spoke to me on Friday, called the Crisis center and had them call me for four days in a row just to check up on me.  I was a little embarrassed because I was not having real severe struggles and there was really nothing they could do or suggest to help me....but still it was nice that someone cared enough to call and check on me.  Even if that is just their job.

I've still been KIND OF losing weight but really it's more just like losing and regaining the same four pounds several times over.  Never really making any losses.  But I do think that once my system gets moving again, I will find that I really have been losing weight, it's just been masked by digestive backlog.  I have to be losing weight because I've been eating nothing bad, all on the Fuhrman diet and exercising to boot.  So I'm sure I really am making some kind of head way.  One of these days, it will all show up suddenly, I'm sure.

I had been good about my Bible reading and daily devotions for quite a while....and then in the past week it's all gone by the way side.  I still pray, sentence prayers usually lifitng someone else up....but haven't really had any heart to heart discussions with God lately. And I'm feeling the lack.  I'm feeling like a real heathen....and it's not a good feeling.  I know God is not crossing his arms tapping his foot, but rather is just saying, "If you would just come to me I would help you!!" 

I promise, to God and to you, that beginning today, I will take care of this lack of abiding on my part....and I know God will be very glad to see me once again.  I will honestly, be glad to see him too.  It's like holding your breath for no good reason....and getting all dizzy and sick feeling just because you've been too stubborn to breath.  Well no more.  BREATHE.....BREATHE.....BREATHE.

I hope that things will begin to be more positive around here.  What do you think of the new look?  That purple just hurt my eyes everytime I came on to this site.

Have yourselves a blessed day.  And remember to talk to the Lover of your soul.  He is waiting.

What of Me?

There is a blog author, whose blogs I have sometimes reposted here on my blog, who wrote a blog that I read today and it got me thinking.  I've been thinking about recovery.  I mean, what is it exactly?  The publisher of SZ Magazine, Bill MacPhee, says that to be in recovery means you would not change who you are now for anyone else.  You are, in other words, happy with who you are and the lot you've been given in life. 

I know that compared to many people with this disease, I am blessed and have good things to be thankful for. I am married.  I have a daughter.  I am not living on the street or in poverty.  And if you have schizophrenia, those things are HUGE and can never ever be taken for granted.  Because many many others with the disease cannot say that they have those things.

I know I have to be thankful.

But sometimes.  Sometimes I'm not.

I graduated fourth in a class of over 900 kids....and that was just because a teacher made an error in my grades....I really should have been first or second.  By all rights, I should have had a spectacular career and made a mark on the world....just like all my classmates, those of us in the top five in that school did.  The only credential I have to my name is that I've been in over 40 psychiatric hospitals.

Day by day....I get up.  check my email.   chat online.  do the dishes.  cook dinner..and go to bed.  That is my day.  Significant?  Not hardly.

I try to be content.  I really do.  But when the most I can say I've accomplished in a week is taking two showers.  Well.  Sometimes I wonder why I'm here.

Here is a quote from my friend, Larry Drain's blog today, "If recovery seems far away know that it is not something to be found and added to life. It is simply life lived as well as you can. And sometimes in the worst of times we find the best of what we can be."

To me that is incredibly wise.  And incredibly hopeful.  Larry is going through some tough times right now.  And I somehow suspect that it is in these tough times that he is finding out what he is truly made of and finding that it is of high quality....He is being tried by fire and I can only pray that he is coming out like purified gold.

To me, in the mundanity of my days; in the bland everydayness of life; here in the place I call home....I see myself.  And I wonder if anyone would miss me if I wasn't here.  I wonder if my place here has any meaning to anyone but me.  I wonder if I am failing God by not being more; by not doing more.  I wonder if my life will produce anything that will endure time's tests.

I am not completely isolated.  For that I am grateful.
I have been able in tiny ways to contribute to God's world.  For that I am also grateful.
My thoughts are few.
My creativity even sparser.
My productivity less yet.
But I am known by God.
That must count for something, no?

Ripples in a Pond

I've just been thinking of some friends....friends who are gone.  Sara (Gitzengirl), Vicki (my sweet sweet chat friend)  David, (my first all-the- time chat friend). They are gone.  The loss of them rocked me.  I was intimately involved with David and Vicki as they prepared for their journey into eternity.  These people were critical to me in the past years....and now they are gone.  Gone.  Their lives are like a stone dropped into still water.  There is a ripple of concentric circles....and eventually those ripples fade and there is nothing but the memory of the stone, now resting on the bottom. The internet, once so alive with Sara....with her thoughts, her suffering and then with People celebrating her life and mourning her loss.  Now there is silence.  Her blog is still there, I checked.  Last I knew her Facebook page was still intact also.

When I go, it will be the same.  There will be a ripple of grief.  A ripple of reminiscing.  And then time will pass....and I will be simply, GONE. 

But in the cases of those who knew the Lord, their lives go on, just in a place where we cannot see them.  Sara is right now in Heaven with her Lord.  She is NOT gone....even though people here gradually will stop talking about and thinking of her.  For loss like that there is a bittersweet comfort.  There is the certainty that those people are not lost from the universe....simply are tucked away in another part of it.

How important it is to have a spiritual life begun while we are on this earth....so that we will have something that will continue to contain our spirits after we leave our bodies.  If we do not do that, then at our death, there will be grief, sadness,loss and that person is GONE.  Really gone.  They may go on living in some unfriendly environment such as hell but as far as having contact with others...they will no more.  They are on their own in a lonely place of suffering never to be seen again.

When I just visited Sara's blog, it was quiet.  Her personality and the specialness of her being is no longer there . It is a vacant house,filled with words and thoughts like old belongings left behind.  But as I thought about her, I realized she still IS.  Her spirit is in heaven.  And it is filling the skies with her sweetness.  I want to be like that.   I know that I will not be mourned like Sara was when I go...but there are those who will grieve.I want them to know that I am not GONE. I'm merely elsewhere.

I don't know why I'm thinking of death today.  Maybe because of the decision I have to make today about the medicines.  Or maybe just because I got to looking for some people who are gone.  I'm missing my old friends. I pray we will one day meet again.  My friends.  Your concentric ripples are fading.  Becoming more faint.  Soon they will cease altogether.  But I pray your spirits are kept safe in the hands of Jesus.  I pray I will meet you again and we will hug and laugh and reminisce.

Die Trying

Today I have to make a decision.  It can lead me to greater health and mobility....or it may well kill me.  I'm going to see a new rheumatologist.  He may want to put me on a medicine whose family is called "biologics"....I desperately need this medicine.  At first I was a bit ambivalent....but yesterday had a horrific day with pain....just sitting down and standing up was all I could do and it was accomplished with great caution and jerkiness and lots of pain.  My neck is progressively deteriorating.  My shoulders are increasingly useless.  My feet feel like they are filled with shards of glass. I cannot go on this way.

I'd had hopes that my diet would help my pain levels but thus far it has not.  Even Dr Fuhrman who claims to cure everything inluding the common cold, said that if you've had an RAD (Rheumatoid arthritic disease) for some time and you already have lots of damage, his diet is limited in what it can do for you.  I think I fall squarely into that category.

How can the biologic kill me?  I know I've covered this in past blogs but maybe you are new here.  I will explain for you.  Because my disease is an autoimmune disease, my immune system is confused and thinks my own joints and organs are the enemy and it sends out killer cells to destroy my own body.  Biologics work by destroying the immune system so it cannot damage me.  But you say, "Don't you kinda NEED your immune system?"  Yes. You do  And this is where the danger comes in.  When I was on Enbrel, first I had pneumonia and then I had endocarditis (and infected heart valve)...Either infection can be lethal.

My infectious disease doctor told me that he expects me to come in with sepsis one day and to not survive it. (Sepsis is a bodywide infection)  ...But then he told me that if he were me, and suffering the way I am, he would opt to take the medicine too.  

So today I must decide....before I see the doctor, what treatment I'm going to pursue.  And I honestly think I'm gonna go for broke and take the biologic.  That is if he will give it to me.

My daughter does not want me to take this medicine.  But she will also not want to have to care for me once I become completely disabled.  If these drugs can give me come quality of life...then why not?   My options are narrowing.  My mobility is diminishing.  My pain is increasing.  Time to do something proactive.  Now it might be that this rheumy will refuse to give me the medicine just like the last one did.  If so, I'm up the creek without a paddle.  There are no more rheumatologists for me to see in this area.  So I'm praying.  Putting it in God's hands.  And leaving the outcome to him.

You'd Think I'd Learn

On Friday I went to the pain doctor via a county run bus for elderly and disabled people.  My appointment was for 10:30....but there were three people on the bus (aside from the driver) so he picked me up first at 7:30.  We got to NY --where the doctor is--at 9:00.  I lucked out and they took me in almost immediately.  However that just meant that I had to wait for the other two ladies....and it turned out the second lady had an epidural on her spine so was under anesthesia and it took FOREVER....We didn't get home until 2:20 PM.....Well, on the way to the doctor, it had struck me: "I forgot to take my medicine"  --and that included my pain medicine.  Well, I was seriously hurting ....Fortunately I had my cane but could barely walk from the bus to my house when I got home (and he was parked in my driveway!!)  I thought to myself, :Well here's a good lesson.  You got to see how much your pain pills really are helping and you will NEVER be so stupid as to forget them again.....

.....Until this morning that is. Yep. I went to church without them.  Some folks just never learn.  And I'm one of them!

Today's sermon was on sanctification.  On Jehovah M'Kaddesh - the Lord who Sanctifies....Sanctify is an interesting word.  It has its roots in the Hebrew word for Holy: Qadosh.  It means set apart for the purpose of worship.  It's like making a vase to hold flowers....that vase is sanctified to hold flowers.  It's doing what we were made to do.  We were made to worship....and God has set us apart for that purpose.  It also means "set apart" as in wholly different than anyone or anything else.  Now in that sense only God is holy.  Only God is wholly "other."  However, we are called to be other than the people surrounding us.  The Bible says we are to be as stars shining in the darkness.  Brilliant points of light in a dark canopy of human failings.

We are both sanctified by God...set apart for worshiping him and called apart to be holy--unlike the rest of the world.  We participate with God in the process of our sanctification..and that is what it is: a process....by agreeing with God in his purposes for us.  We agree that we want to be "holy as God is holy" and so we strive to make choices that are pleasing to God.  That doesn't mean we won't make mistakes....No matter how much it hurts us, we still will sometimes choose the wrong thing ...or forget to do the right thing (like taking our medicine!)  But all in all, our heart is in tune with God's purpose for us.  We want to worship him by doing what is right and by the growth of character gems...the fruits of the Spirit in our hearts and lives.  And we stumble along in our baby steps, striving to follow in the Father's footprints ,...which are hopelessly too big for our stride with our baby legs....but once in a while we can catch up and plant our foot in the spot where the FAther has walked...or where Jesus has walked....and that fills us --and the Father--with joy too.