Running -- Into Walls

Well, a week ago tomorrow was my epidural...which was incredibly effective at reducing my pain. It almost eliminated my back pain--Untiltwo days ago.
I had a busy day planned. Picture a house where the primary person in charge of cleanliness and order--has been out of commission for about two years. You get the picture. Now we DO have help in cleaning it every two weeks ...but you have to see my closets! Mass destruction.

And even my paperwork has suffered tremendously. Take filing for example --
--I even have it tied up into bags, so you can take it more easily.

My desk is littered with letters that need to be answered; insurance claims that need to be followed up on; well...you get the picture I'm sure. And you may wonder why letters don't get written and phone calls made...after all, I'm not paralyzed. It's because pain paralyzes my life. It sucks away all my tolerance for frustration...It makes it impossible to even sit at my desk for more than two minutes... And I couldn't even do a lot of stuff on my laptop because for over 6 months, it was broken and after it got fixed, we didn't have a printer!

My closets are the kind where you have to fight to open the door...and then -- duck! Actually they are not quite that bad....well, yes, maybe they are.
I would love to have a day, just to spend on my bedroom closet, which doubles as a bathroom closet and linen closet......
For the past some odd years it has been a struggle just to get my clothes off, let alone hang them up! Actually, the clean ones ARE hung up...(just so you don't think I'm a total pig!)

Anyway, you get the idea of how I needed to spend the day, and maybe the next four years. And I did get a lot done. However, after working out today, I had a distressing lack of ability to move my left leg for several minutes...It was just kind of hanging there...attached but not FEELING like it was attached. I'm at a great risk for paralysis due to my back situation, so this did give me a pause. However, after several minutes, once again, awkwardly, it moved.

I don't think it likes lunges.

For that reason I had to cut my workout short after only about a half hour. But I got a bit of a workout today doing what I needed to do around here.

So here comes the second wall that I hit.
This morning I moved in a way that my back really didn't appreciate. And I felt the first horrific , mind-freezing stab of pain that I'd had in close to a week, since my epidural. And from that point on, the pain steadily came back...It still is not as bad as it was...but this is the way I responded to the injection of steroids into my bad hip. It worked great for about three days (that time) and then the pain gradually came back until in about two or three days later, it was back full force.

Now.
I'm not happy about this.

(Don' t you just love an effective usage of understatement??)
Actually, I have so much enjoyed my small vacation from hell, that I'm just not too willing to go back. Besides, there is still much to be done. And that 's just the WORK...never mind the fun!

Honestly, I'm joking about it ...but underneath the jokes are a lot of tears which haven't been (and won't be) shed.
I LOVED being able to work out hard and long. I was amazed at my strength and my improvement in my cardio endurance. Take pain out of the equation and I'm an exercising machine!

Even though I still had pain from the PsA in numerous joints, and pain in my cervical spine which is a mess too...The worst pain, is in my lower back. And that pain is over the top...
...and it pushes me off the edge.

Hospital Gowns and Zumba

I had an epidural on Wednesday of last week. I donned that lovely paperfiber poufy surgical hat...the gown which leaves NOTHING to anyone's imagination; the sockie-things with the rubbery bottoms and was carted off, IV in tow, to the OR. This is the FIRST time I think, that I've ever gone there on my own two feet, lol. I walked into the room...faced the OR team and felt a bit daunted by the number of people in there...it's only an epidural after all. And there is something about wearing a backless gown...that just sort of puts you a bit on the defensive....

They asked me to climb onto the operating table and to lie on a series of pillows on my stomach. Well, that presented a twofold difficulty:

1. I was in so much pain I could barely walk....It hadn't been one of my better umm,... years. And
2. I can NEVER lie on my stomach...With as many metal pieces and fusions as I have in my back, it really is not optimal, to put it very mildly.... But, always being willing to oblige, I did my best and tried not to scream too loudly ( :) ).

Then the instructions got even scarier..."Just scoot yourself up to the end of the table and hang your head down off of it..."
WHAT??
ARE YOU KIDDING ME??
The problem was again twofold:

1. "Scoot" is not in my vocabulary. and
   
2. With the condition of my cervical spine, my head wanted to stay upright, vertical, rigid , and squarely over my shoulders, thank you!!

But being ever willing to oblige, I did my best...and after not being satisfied with my first try, the doctor asked me to readjust and "hang off a little more" ...so finally, I did so and was SO grateful that just about then, they must have put the beautiful knockout juice into my IV...because the next thing I knew when I opened my eyes was someone telling me "It's all done"

DONE??
YOU MEAN IT WORKED?? HE GOT THE NEEDLE IN??
yes. After five prior tries...this genius doctor whom I badly wanted to kiss just then, got it into my arthritic, degenerated spine.

And then I felt it.
No pain.

I need to say that again.

NO PAIN!!!

Well, sadly, I was informed that this was due to the local anesthesia they had also put into my back and it would wear off.

"Still," they told me, "some people DO get immediate relief...although you may be sore tomorrow. "
Well, yeah, I was sore. But believe me, SORE IS NOTHING!!
WOO-HOO!

BABY, TAKE ME DANCING!!!

LET'S DO ZUMBA!!!!

ROLLERBLADING ANYONE???

And best of all, when the 'soreness' left...I was great. Very minimal pain. Well, at least, minimal to me. I've lost all sense of what other people would think of it.
When the nurse asked me prior to the epidural, what level on a scale of 1-10 I could live and be happy with, I told her "6"...she looked surprised...but , hey, when every day is an 8 or 9; a 6 sounds heavenly.

And you know what??

It is.

Holy Holy (lift up his name) Live, Phatfish

This is my new favorite video....I am compelled to watch it numerous times in a day.
Watch, Rejoice, Worship!

A Christmas Miscalculation

On this night; the eve of Christmas Eve...at about this time: midnight on the newly arrived eve of Christmas...about forty or forty one years ago...my cousin and I plotted in our beds that night in snowy Erie, Pennsylvania. We had decided that we would stay up until midnight. We determined that WE would tiptoe downstairs on the stroke of midnight and catch WHOMEVER IT MAY BE who was placing our gifts under that brilliant tree. And just maybe, we would catch a peek at what it was he...or they....had brought.

We didn't really believe in Santa. Neither of us had been raised to believe in such a fallacy. But OH, it was such a nice idea. And in our childishness, we wanted to believe in him...but at some level, understood that it would be most likely our parents whom we saw doing that gift-placing.

So, tucked in our bed, we giggled and whispered our way to midnight. Excitement tingled us and we fought off yawns as the moments ticked slowwwly by. finally, it came. Midnight!! Surely, even now, someone, was putting our gifts under that tree so that, magically, it seemed, they would be there as we woke for breakfast.

We crept silently, sleuth-like, down the stairway...and peered over the banister.
The room was dark!
Not even the Christmas lights shone at this god-forsaken hour...
And not a single package did we find under that tree.

Disappointment froze us and we slunk back into our beds for a disenchanted sleep.
The next morning, we questioned our parents: Where are all the prensents? Today is Christmas, for pete's sake! Where are the goods???
And we discovered, to our great chagrin that we had made a serious error in our calculations: we thought that THAT was the night before Christmas...not merely the night before the night before.

our balloon being popped.
our plans coming to naught...
WE abandoned our quest.....

And the next morning; on Christmas eve evening, the miracle happened.

As we stumbled on Christmas morning down the steps, rubbing sleep from our eyes, that amazing display of love was piled under the tree just waiting to be torn into.

Who needs Santa??

Morose Woes

Did you know that "morose" is not a word??

It's a fact - I have it from the mouth of a High School English teacher who publicly berated my daughter for making up words when she used the word "Morose"

What is happening to our educational system?"???

My daughter should have then asked her if "moron " is a word she might use.

Wireless Printers and Harp Strumming

So.
I got a wireless printer for Christmas...this printer sells for $150 normally and was on sale for $100.00 when it was purchased. However , it would have taken a computer tech to install it...and in fact it DID. When both my father (a retired I.T. director) and my husband (a computer savant) looked at the directions and said it was beyond the scope of their abilities, I knew it was time to call in a professional.

So I called the guy who recently replaced the LCD screen on my laptop. He came over and discovered early in the process of installing the computer that we had network problems...which took him close to two hours to solve. Then add the half hour that it really took to install the printer and I came up with a whopping bill close to three times the cost of the printer.

AND I discovered (or rather HE discovered) that our PC has a virus and therefore the printer would not work with it.

But in the end, I am happy with the result.
Yeah it was really expensive...But I got what I wanted. I can click "print" on my laptop and out in the living room, I can hear the printer begin to do it's thing.

It's all about perceived value right?
I mean, $400 to buy and hook up a printer, seems absurd...until you balance it against the giant pain-in-the-butt that it has been not to have a printer at all for these months. Then suddenly, that price seems not so bad.

I guess Christianity is a lot like that.
The price of being a Christian can be enormous...in many countries it will cost you everything you have and maybe your life too.
And even in this country, it can bring you mockery and giving up all of the "fun" things that God says are just wrong....including the "right" to "justifiable" anger and the "right" to pride that we, as mankind, so highly treasure.
The IS a cost. Jesus told us to "count the cost" before undertaking the journey.
Soon, in this country, there will be an even higher price to following Him.

So, what justifies this high price?
What benefit does it offer that could possibly make such suffering justifiable?

Well, it all depends on how much you love him and look forward to seeing him.
And it really all depends on how much you know about Heaven.
Honestly, the popular beliefs about Heaven would make me want to run the other direction rather than to suffer in order to attain it. Floating around on a cloud, strumming a harp, just doesn't appeal to me that much. And honestly, neither does eternal life. I mean, if I had to float and strum forever and ever...well, please, just let me decompose in peace!

However, Heaven is NOTHING like that. The books of Randy Alcorn have helped me to understand more fully what awaits us; what the Bible REALLY says about what God has in store for His children. And I want those two things: being with Him and to live in His Heaven--so badly that I would do anything, I think...pay any price. And the reward is so valuable , that any price paid will seem reasonable, even small in order to obtain it.

Goin' My Way??

Since I've stopped driving, over a year ago, one of the largest frustrations in my life is arranging for transportation. Thankfully, I have friends at church who have stepped up to the plate and are willing to take me places... However, their availability is limited and comes attached with feelings of remorse and guilt on my part. I rarely have the money to pay them for gas. And most of my doctors are in a neighboring state close to an hour away...so to take me to an appointment is a fairly major commitment.

And when you only have four or five people splitting the duty between them, and you have sometimes four doctors appointments in a month, the burden gets to be heavy...Never mind transport to church and to Bible Study (which are not really a problem because people are going by my house on their way there anyway) and the occasional trip into town for a haircut. So needless to say, these particular instances are the only ones I have EVER when I can just get out. It makes for a very limited life. And forget it if I run out of a staple grocery item midweek!

I have one friend who blessed me IMMENSELY. One day, around Thanksgiving time (I know this because she bought me my first ever Dunkin Donuts pumpkin latte...yummy!), took me out FOR THE WHOLE DAY. She called me and said she was planning on going to a bunch of local stores for a day of shopping and did I want to come!!!! DID I???? I almost jumped up and down at the chance. We had a wonderful day, KMart, Walmart, Shop Rite, TJ Maxx...by the end I was in horrific pain but so happy! Her thoughtfulness meant more to me than she will know...but did I write her a note and tell her that?? NO! I'm a real clod when it comes to etiquette. Two thirds of that problem is due to lapses in memory...and by the time I do think of it...so much time has passed that it is embarrassing and irrelevant.

I feel so much like a prisoner here...just the cat and I in our solitary confinement. My husband works long hours with a long commute, so is never ever willing to take me anywhere but to our weekly grocery shopping at Walmart. But if you ask me, a trip to Walmart while not high on my list of "Fun Things to Do"...is still preferable to sitting at home. At least it USED to be....

Lately, I've noticed a trend in myself ...a new tendency that is disturbing.
More and more I am turning down opportunity to go out...like to church or to social events there. And since my last fiasco at a church gathering, where the noise and confusion prompted total panic and I went running, coatless, out the door into the cold....I'm more and more reluctant and anxious about social atmospheres...Even going to the store prompts fear. I do NOT want to develop agoraphobia on top of everything else. I don't know if this is just a new manifestation of my illness (because it is a common one among schizophrenics) or whether it is an anxiety disorder cropping up because of the lack of social exposure. Either way, it can take a hike! I'm miserable enough being cooped up here...and that misery will not diminish...it will just be eclipsed by the GREATER misery of public panic.

There is little hope of a change in my situation. Even if someone were to give me a car, I don't think I'm really safe to drive one...between falling asleep at random times and not being able to turn my head to look where I'm going I wouldn't want me on the road either. Maybe I should just give up on going out and hole up here...tapping away at conversation on my computer keys.....And grow my hair down to my knees....Like Rapunzel.

The Crest of the Wave

Today, on a forum that I frequent for people who have the same psychiatric diagnosis as do I, the question came up as to whether some people got some enjoyment from their periods of exacerbation of their illness and whether this was normal...There were a number of responses, many of which indicated that yes, in the midst of the trauma and discomfort, there is a sense of heightened "reality" (which really is nowhere near "reality") and a sense of intensity that is just plain missing in our real lives. Even during periods of complete psychosis, I find a relief....a sense of letting go and a relaxing of the constant state of alert tension that I'm in to monitor my thoughts and behavior and to keep them within the range of "normalcy." And this relief can be very great...especially as psychosis rarely (for me, anyway) happens instantly...it is usually a gradual deterioration in the level of our thoughts and behavior...and often an intensifying of emotion that can be very welcome for a person who, due to the negative symptoms and also the side effects of the medication , can often feel dead or blunted inside....

For me this "blunted" manner of experiencing most (if not all ) of the things in my world, is particularly distressing. I am historically a creative person...and I find that during periods of stability, I create little...have no creative energy, ideas or impulses...and as an artist and writer, this is an intolerable state of affairs...and one that I can only deal with for so long. And after that point, things begin to break down...Angst settles in, often accompanied by depression and paranoia...and now, once more, I have that energy...and even though it is negatively spawned, it still feels like energy and is therefore welcomed. To a point. Then a line gets crossed and it becomes purely terrifying and horrible to experience. You always wish you could ride that wave...surf that energy and have it available at will. I wonder how creative people are that are normal (are there such people??)...do they feel energized to feel and create a lot or most of the time?? When they do; are they HAPPY?? or is their energy fueled by misery also.?

I would like to know the answers to those questions. Because for me, now, being on meds and being stable has sucked the life from my creative spirit...It has divorced me from any enjoyment I might derive in life or art...It has distanced me from the people around me whom I "ought" to love with my emotions as well as my will... And I often question whether the trade off is worthwhile.... However, should the opposite end of the spectrum lead me to conduct traffic in my bra and panties or to try to leap from tall buildings in a single bound....then yeah, that does kind of border on behavior that needs to be addressed.

Why is there no middle ground? why can I not feel without being destroyed by those feelings?? And why are my emotions never spawned by things in my real life, but only by my internal (distorted?) perceptions?

Schizophrenia Bites

12-13-10 3:20 a.m.

no ideas what to write about...and the way my mind has been working lately you should put on a seat belt to read this because you're in for a heck of a ride. I"m beginning without a topic...which is always interesting because it's like taking a journey without a destination in mind. And when that is the case the JOURNEY itself is what is important and what is the point.

I'm on a bit of a journey and while there 's one likely destination....not one I'm hoping for.....the journey has been interesting...but I don't want to look back at it other than to say that along this way I've met a new friend who has been my balance when I've lost my own. she is the voice of reason that has kept me from Golden Gating or going postal. Schizophrenia bites. (That would be a GREAT blog name!) it' s taken huge bites from me and from my life....masticated and extruded them in quite a mess.

my mind has been pogo sticking around all night, pausing for an occasional hallucination (don't want to get run over by one of THOSE, always best to stop....and do a seat belt check) and tippy toeing around those pits of despair that seem to spring up like the natural hot geysers at Old Faithful National Park, spraying their stinking muck all over anything ....so like your mom said, wear your seatbelt and your raincoat....! Good advice for any schizophrenic or friend of one.

so that out of the way....what dowe talk about next? I could really go for a cup of coffee. It is a bad addiction from years past ...I'd quit the stuff completely in the past five years of healthy eating....but an occasional treat has turned into more of a regular thing of late. Now CIGARETTES ...that's another topic I could go on about. and they are not unrelated....especially to the person with SZ. There is supposedly great almost unbreakable power in the physical addictive potential for those two substances in the person wiht SZ (and I've beaten them both....just a self stroke for my back.... :P ) However, as hard for us to overcome as they may be...we have great strength of will , concentration and self will (any one who has to learn to function DESPITE continuous the continuous distractions and interruptions of hallucinations etc HAS to have focus!!....just to make it to the bathroom. And if you've ever been in a bathroom in a psych hospital, you'll know that not everyone meets that aim. :dd)
Any way enough potty talk....light me up a "fag" (as my British friend puts it)....sometimes I really miss them , even though I hated them passionately. I find that absence does NOT make the heart grow fonder....Absence of consideration is the only think that keeps me from buying a pack sometimes ....I cannot let my mind even GO THERE.)

The stress of the past several days of psychosis has brought a lovely psoriatic sheen to my face as my psoriasis is in bloom in (naturally) the most conspicuous area I own. It has also brought demolition to my bedroom. It'snot that I don't clean it...I do...daily. But the HAVOC I can wreak in mere moments is astounding. I'm trying to contain my powers of mass destruction within this room alone. The rest of the house doesnt'miss me. In fact, it's been sending me thank you notes for my absence. Except for the kitchen sink....; it is begging me for some of my attention ....but hey it can wait its turn....my attention is too scanty to be handing out right and left.

so that's the journey...a five minute voyage that took me WELL over three hours to write because of the diversionary tactics of a hallucinating mind. ah well. It's been an interesting trip (just HOW interesting you'll never know, because I'm not gonna tell you. )
oh and yeah. the cig and coffee pic is done by "dancinpantless" (her name choice, not mine)

The Unanswered Questions

Healthy diet, exercise....these have taken a back seat to eating at all...and to surviving. I have no appetite. Food sits like lead in my stomach. I struggle not to toss those cookies as soon as I eat them. It's all I can do to get out of bed with this body that resists my every move...the thought of exercising is the last thing on my mind.

I'm sick in body, and mind.
Pain is my closest companion these days.
And it's all I can do to face it another day.

I haven't slept more than an hour or two in over a week.
Pain disrupts me and springs my eyes open moments after they close. I crawl from the bed to my recliner and back again...all night long. I finally found a plug outlet that will reach both spots for my laptop....so that doubles my options of where I might rest. The arthritis is a pittance of my pain...a drop in the bucket. It' s the lethal combo of bone and disc disintegration in my spine...and some unnamed pain in my abdomen that is killing me.... but way too slowly.

Music is the only respite I am finding. If I can blast it loudly enough...it does distract me a little.
I listen to music at full volume in my iPod earbuds...It's the science of diversion. If I could just find a thing that consumed more of my body's focus than my pain, then the pain would feel less. At least that's how the theory goes.

There' s a Rich Mullins song: My Deliverer. and it says..."my Deliverer is coming ; my Deliverer is near." I play it over and over. LOUDLY.

I love God. with my whole heart. But when really pressed...I do ask Him "Why?" and the only answer I get is "Trust." It's not one I want to hear. I want ANSWERS. Time frames. a finish line. I want it signed on the dotted line, sealed, and delivered.
Instead I'm the only one sealed and not yet delivered. At least in one sense. In another sense...my Deliverance is complete.

The worst part is being alone. Alone in my house, day after day...my husband often leaves before dawn and is home after I'm already trying to sleep. My daughter is usually gone too. And there is the other kind of loneliness....the kind that comes when it dawns on you that, as much as people want to understand ....they don't have a clue.

But here I am.
Here He has me...Roped and bound.
Fit to be tied.
Longing for sleep and waiting for morning.
And clinging to the mantra I've adopted from a disabled pastor, "This sucks. God is in it. and God is (still) good."

Not sure what that---or this-- all means in the grand scheme of things. It's one of the questions I will ask him when I get to Heaven....
After I'm done holding him.
And AFTER I'm done roller blading.

Censorship or Political Correctness?

It's three a.m....Much pain; no sleep. Ahh well, that's my life... It gives me time to pray...and to catch up on my blog writing, so it's not all bad.

Today a blogger friend of mine sent me an email, panicked because another blogger had posted a link to her blog and said that her blog post had served as a factor in his recent downslide mentally and emotionally as he struggled with a minor form of mental illness. She asked me with some concern, whether I thought she had said anything inappropriate. I read through both of the blog posts in question and then had to tell her honestly, that NO, she had done nothing amiss. She asked me whether she should begin to put a disclaimer and warning on her blog posts that they may be triggering to some individuals.

I thought for a minute, and then had to say, "No, I don't think that is necessary."
I thought for a few minutes more and then began to laugh to myself at the absurdity of the point to which we have come in this politically correct and liability-minded litigational world. I began to make up scenarios to myself that may trigger some unfortunate soul and thought that maybe EVERYTHING put into print should perhaps have that same "trigger" disclaimer attached.

For example:

• Should a post mention a person's trip to the mall; well, that just MAY trigger someone's agoraphobia
• Perhaps a person with OCD (Obsessive Compulsive Disorder) may feel compelled to count the characters on your post, so that too could present a problem for which you just may be liable.
• You might mention that you have a cold; and this could set someone's hypochondria wild.
• AND, you might mention Jesus and a schizophrenic just MAY think you're talking to him!!

(Sorry if those examples offended anyone. It's pathetic but I need to add my own disclaimer here for fear of retribution as well. I myself have schizophrenia...but I also have a sense of humor, which borders on the sick side; so I feel that this gives me the "right" to comment in this vein. If you don't think it's funny,...well, there are lots of other posts you might read instead... :) )

I had myself in stitches at the thought of these absurd examples...and it is indeed a sorry state we've come to in a society when we need to hamper our right to free expression in order to tiptoe around hypersensitive feelings. I do believe that we should also take care not to be offensive or explicit in manners that are not appropriate for children to see...But a good laugh, or plain old honest expression, such as the blog of my friend, should NOT be exposed to self-censorship.

Kindle the Fires of Change

This week I got a Kindle wi-fi. It was my husband's gift to me for my birthday...and yes, my birthday is still several days away...but he was too excited to wait. I struggled with the decision as to whether or not to go "digital" and join the 21st century by purchasing one of these devices. This hesitation was on several fronts.

One is that, as a writer, it is sort of like sneaking over to the enemy camp...The future of publishing is going to be greatly challenged to take on a new shape in order to survive the advent of e-books. Writers will no longer be able to walk away with the profit they once did...and what of the zillions of bookstores that will now be jeopardized by these intruders? Mom and Pop businesses where I have spent many happy hours and many hard-to-come-by dollars on their wares, will now most likely not survive...at least not by selling books alone. And what of the careers of the agents, printers and that whole trade which previously relied on the publication of books? Isn't it rather Benedict Arnold of me to buy one of these items??

Well, as a publishing agent recently said in his blog; books survived the advent of the printing press...and that of the computer and personal publishing...So they will have to adapt and revamp old systems...it is the way of the world. Change challenges us to be creative and fluid in our approaches...keeping us from getting too staid, comfortable, and boooorrring in our pursuits and habits. It truly is "Keep up; or get out:" right now for those involved in any way with the sale and production of books. And how does this affect the writer? Well in many ways.
For one, they no longer necessarily must face the daunting price of production for their wares....and thus do not rely on the agents and publishers as they once did. So how can that be bad? (for the writer and the public; not for the poor abandoned publishing industry....) For one thing it means that any Tom, Dick or Harry may now quite easily write and publish his own book...So the potential danger is that the quality of the products available, may greatly suffer. It means that the means of reimbursement must be looked at carefully and revamped and also that safeguards must be put into place to forbid and prohibit illegal distribution and marketing of the written works so as to protect the copyright of the writer. So there is a lot involved. And much needs to be looked at and carefully thought out in order for this transition to go smoothly.

And still, there will be purists, like my daughter and my friend's daughter, (of the same age - in their late teens)...who vow never to commit the sacrilege of owning an e-Reader. Oddly, it is the very generation, so attached to their electronic gadgets, among my own acquaintances, who are most opposed to this transition. They love the feel and smell and ability to HOLD and POSSESS the books and do not want to give this up for an impersonal piece of plastic. I can see that. In fact, I struggled with the decision myself for that reason. I LOVE my book collection! It is vast and much treasured. However, the truth is that I was not reading much anymore. Part of that reason was that it is getting more and more difficult for me to grip and hold a book and to have the dexterity to turn the pages due to the crippling of my hands with arthritis. The Kindle, easily beats a book in the ease of operation...at least in that regard.

Now, I struggle with a new dilemma. I sort of never want to read a paper book again after getting my Kindle. (painful confession , that was). And I have a number of books I'd recently purchased that I have yet to read. Do I now, have to purchase the e-version of them in order to do that? A bit redundant , yes? Also, there are many beloved books in my collection...ones that I want to refer to and reread many times. Do I also buy all of those? I would easily go broke and never even get a single new book that I don't already own! So these questions will have to be assessed and evaluated one at a time...and some tough decisions must be made.

And there is also the great danger and temptation of that "single click ordering" that is so easy and nice. Just one little click, and there, Bingo! within a second, you have a new book. Uh-oh! Do I smell danger here? Well, I've made myself a promise not to purchase a book (Unless it is a reference book or something like a Bible) unless I've read the ones I already own. That should greatly slow me down. This is where Amazon's "Wish List" becomes a precious commodity. If I MUST have a book, just stick it in there, until I have the money and am ready for new fodder.

Speaking of all this reminds me, I have a GREAT book to go and read. What am I doing here talking to you??
haha. JK

A Giggle from God

Well, this blog began at the beginning of the month, with some pretty lighthearted looks at some topics...but has gotten progressively more somber as time has gone on. I don't like this trend. While I think it is important to discuss things deeply and seriously...I also think it should always be done with a sense of humor. We take ourselves much too seriously.

As for me, I don't think that I take myself so seriously...but rather that my life has become rather serious: rather a fight for existence against the jaws of pain which would love to chew me up and spit me out somewhere along the way. I've been struggling against this happening; clinging to my pursuit for meaning in the face of a grim existence and a long future ahead of me or increasing pain and difficulty......Sometimes life just ISN'T FUNNY.

But you know.
Life may not be funny...or fun. But God is always good. And he, unlike me, never loses his sense of humor. Sometimes, it's in the very speed with which he comes racing to answer our cry and our requests and our desperate questions...that I can hear his giggle of delight. It's almost audible his thought, "It's about time you came to me with this one...and now that you have, HERE'S YOUR ANSWER....ta-dah!!"

Yesterday was like that.
I had a brutal night. I've used that word to several people now to describe it. Because that is the only word that seems appropriate. I've been engaged in a bloody battle with pain...and this enemy HAS NO MERCY. Last night, I got to the point of despair. (Which is a place I struggle with all my heart not to go these days.....) I began to pray through sobs...while sitting in my room in the dark, on my recliner...being nauseated and crushed by wave after wave of pain. I began to ask God questions that I normally do not need to ask...Areas where normally my faith is strong, suddenly became pits of quick sand where I was sinking up to my neck. I said to God:
"WHY???? why have you destroyed my life...and my very purpose for existing?? You have taken and removed every ability, every competence; every piece of enjoyment; every freedom...Every possible reason that I could have for existing is gone. And now the only thing that remains is my heart beating and this horrific pain. It has swallowed me. And I cannot go on like this anymore! It's not like I am suffering for my faith, and thus winning heavenly reward....it's not like I'm suffering for the benefit of anyone else...NO! I'm just plain old SUFFERING. It's pointless. and cruel. And I can't do it anymore. I need to know Why?? And what of what value is my life? Why do you prolong it? Please God, bring me to be with you...now. Tonight. Because I cannot survive another moment of this."

I questioned his purposes. I questioned his intent for good in my life (My benefit, my hope and my future - see Jeremiah 29:11-13); I questioned his wisdom...I questioned his concern for me. I questioned why I existed as well.

And God, instead of crushing me or disregarding me or being angered at my distress and this stumbling in my faith...chuckled as he revealed to me the answers to each question. And when I entered the kitchen...and saw dishes stacked from counter to ceiling...and dirty counters...etc., I began to cry...Because my pain was so great, I knew it was impossible for me to clean up that mess. And I cried out to God for help. I asked him to please send me someone to help me that day.

And not even ten minutes later, a friend on Facebook said to me, "I'm not doing anything today; do you need me to help you with something?" Well. YEAH, as a matter of fact I DO!!

And let me tell you that this is not something that has maybe ever happened before. NO one has ever come to me with an offer like that one. NOPE. This was God's giggle of good blessing in my life yesterday.

And there were more to come. I had a delightful day. This same friend took me out for coffee and later, out for lunch. And then to Walmart (OK, I DO have to forgive her for that one....) I do not often get out...And if I do it's to go to a doctor's office...Not for anything fun. So this was a great blessing and gift from God. A soft caress on a tear-stained face. A kiss for a confused child.

And later in the afternoon...He answered my questions in regard to my need to understand my function and purpose in life. And more specifically, why suffering is necessary in order for me to fulfill those purposes. And he showed me that, no, I am not cursed by God, but rather that he has blessed me with HEALTH , WEALTH AND WISDOM. Even though, I am sick, poor, and confused. Two friends, spontaneously, prompted by my chuckling Dad in Heaven, spoke to me via the internet (email) and brought these issues to my attention. And neatly spoke with the voice of God directly to my need.

So, even though I may have lost my giggle; My God has not. And it is not a mocking giggle. But a giggle of the loving delight he takes in me...and laughter which springs from his joy in responding immediately to my urgent need.

Deut. 33:26
"Yeshurun, there is no one like God, riding through the heavens to help you, riding on the clouds in his majesty."

Psalm 69:32
The humble will see their God at work and be glad. Let all who seek God's help live in joy.

Heb. 2:18
For since He Himself was tempted in that which He has suffered, He is able to come to the aid of those who are tempted.

Yes, God laughs when we've lost all our sense of humor.

The Regret Monster

For me, there are two horrible feelings. I think they must be the worst feelings in the world to endure. Because I've had an Eating Disorder for many many years, one of my feelings may not be shared by the majority of the people who read this. At least not anything like in the degree that I experience it, and that is the feelings of sickness, disgust and self-hatred I get when I've eaten too much, or something really junky...like four Ring Dings (just for an example...I haven't done this particular feat but it seemed like a good example to give.) And ironically, my response often when this has happened is not to be exceptionally careful about what I eat from then on, to try to balance it out....NO, it's the All or Nothing thinking that kicks in....and because I am now an awful person because of what I've just eaten, I have to go and PROVE it by eating more and sickening myself further. (And no, I've not had a problem with bulimia. My problem was anorexia...but you must understand that a small dish of ice cream to a person suffering with this disease, feels just as bad to them as would eating two containers of ice cream for someone else...and worse.) It is true that the quantities we are talking about here have grown as my recovery has progressed. And now, when I overeat, it really COULD be considered overeating , although probably not anything like what some people would consider even normal.

Last night I did this and I am heartily regretting it this morning. (In fact, have been regretting it all of last night.) And here, actually is an important word and concept: REGRET. Regret has to be the WORST emotion to bear when it is inordinately intense. Have you ever said something and just wanted to EAT your words...and you've agonized over it a million times in your mind and there is NOTHING you can do to undo what you've done?

That leads me to my other terrible feeling. And that is when you've done something that you KNEW was wrong, and you did it anyway. And you are disgusted with yourself ...and sick about it. It was wrong before God...and wrong in your eyes, ...whether or not other people would share that same diagnosis, is irrelevant. To me, to God: it was wrong. And I can't undo it. And all I can do is sit with this regret twisting about in my gut....Then comes the soul-mate of regret: self hatred. That's when the mental dialogue begins: the self castigation; the raking over the coals...and the internal and horrible things we say to ourselves to make ourselves feel even worse.

To me, these are the hardest times to bear: those moments when I'm left alone with monster called Regret.

Tonight (rather last night,...it's now 7:00 AM), I've done things worthy of both of these kinds of regret. I over ate and I did something that I know was wrong. And I'm sitting here with that sickness of soul that follows....And the thought came to me:

"You don't have to feel like this."

Now, it is good to be convicted when we've done something wrong, just for the purpose of letting us know that we've done it....to identify it. However, God never intended us, His children to bear the weight of ongoing guilt. THAT's why he sent Jesus. To take care of that, once and for all. Conviction is God saying to us: "Look, what you just did was wrong. It needs to be taken care of...." GUILT, on the other hand, is a punishment in itself. The pictures some people have of a God who takes delight in crushing them with a heavy hand of guilt is completely wrong. Yes, we are guilty. W e are innately guilty. (I know some people will dispute that, but I can recognize an innate sin nature in me; a self that loves to do what is wrong and doesn't please God....And if you have enough softness of heart to recognize and sense conviction, you will agree with me too.)

God doesn't want us to live with Regret and his soul-mate. He doesn't want the self hating diatribe to begin in our heart. Rather, we wants us to take delight in his gift to us of making right the relationship we've tainted with our sin. He wants us to bring him our dirty rags in confession and he wants to hand us once more the white robe of "righteousness" or rightness with God. Why do we waste so much time before we take it to him? Shame? We think we can hide it from him?? I won't even comment on the ridiculousness of that thought...but I often have it too. Do we need to suffer a bit first?? To feel like somehow WE were contributing to "paying for it"??

Listen: What Jesus did on the cross was perfect. "It is finished" he cried at the end. And it was. Our sin no longer holds any power to keep us in bondage or captivity to regret. Nor does it hold the power to separate us from God that it once did, before the cross. Isn't this an amazing piece of news?? We can take it; dump it, and LEAVE IT THERE, walking away as fresh and clean as if we'd never even considered doing such a thing.

Of course this is presuming we've already initiated a relationship with God...but no, wait, that's not true. It is a possibility for ANYONE. All that's required of us is to recognize that we have sinned; that our sin makes us unacceptable to a holy, perfect God. And then ask him to let us come under the covering of the amnesty that He granted us through the blood of Christ. And then that freedom and release and innocence can be yours also.

And as far as that package of consumed cookies goes? Well, it pales, I guess in comparison. Although gluttony too is a sin...So take it to the cross. And if you have ED like me, ask for a touch of healing from those patterns of thinking as well. He's a big God. And Healing, Pardoning, and Forgiving are his business. So don't try to pay for it yourself, either by self recrimination or by good behavior. Because you can't.

The Wonder of Worship

What is it that is magical about the lights on Christmas trees, candlelight, the song "Silent Night," the first snow fall, ...? I think it is a combination of things. It brings to mind the sense of sacred awe we felt as children when faced with these things for the first time.
It is that sense of privilege that we have when we are allowed to attend our first midnight candle-light service as a child: replete with the excitement of staying up REALLY long past your bedtime; knowing that Christmas is tomorrow and the mystery of what lies under that tree; the beauty of the candles, starlight and snowfall reflecting the Christmas lights that give that image of that "Little Town in Bethlehem" and the beauty of the baby born there, hidden away in that stable. And to your little mind then, the world seems to be just about perfect. The fight you had with your brother, the spanking you got yesterday, and the distress you felt when you heard mom and dad yelling at each other that morning ...all vanish...and you feel a sense of peace, delight, and excitement.
To me, I think some of that awe, peace, and joy is what we will feel as we step over the threshold into heaven...for those of us that are going there. This, this childish awe and wonder, is how God meant us to be ALWAYS....And I think it is how Adam and Eve felt ALL THE TIME...as they explored the beautiful garden of God. As they examined discovery after discovery, their hearts thrilled with the understanding of just how much they were loved. I am feeling some of this wonder now, as Handel's Hallelujah Chorus just came on my iPod. God is on His throne: King of kings and Lord of lords! Hallelujah!

Folks, we were made to worship.

People don't like that idea now, because it means inherently, the admission that something or someone greater than ourselves exists in this world. But honestly, with my hands raised toward heaven, singing with all my might, and tears coming at the beauty of my God...nothing in the world could feel better than that. That is what I was created to do ...

And the awe of the silent wonder that comes when we consider the Christ child coming to this earth...that KING OF KINGS AND LORD OF LORDS, coming to a dirty stable in the helpless wrapping of an infant...growing up to die....for me... That too, is what we were made to know...How very very much we are loved and adored by the Maker of the ends of the earth.

And the wonder of it all will dumbfound us when we finally, in His Kingdom, begin to understand the full impact of that. And the awe I felt as a five or six year old, holding my candle in it's paper holder watching that spark ignite into flame, surrounded by the strains of O Holy Night: that is just a slight inkling of what we'll experience in Heaven when surrounded by a sea, thousands upon thousands of worshipers, as we lift our hearts and hands to worship the King as he enters and sits on his throne.

We were made to worship.

Sushi and Paper Pilgrims

I was just thinking...trying to come up with some Thanksgiving memories. I don't have many memories of packed tables full of relatives and friends...I think there were a few times when my family made the 9 hour car trip from our home in Hackensack NJ to Meadville PA (FAR western PA) to tables of cousins and aunts and uncles: tables of adult grudges and hurt feelings; tables full of my oblivion to that fact...only cognizant of cousins I hadn't seen in a long time...the initial hide-behind-Mom's-skirts shyness which was soon replaced by noisy games of tag and childish excitement. Hungry hand-slapped sneakings of the food that we insisted must be pre-tested /and approved before we would consent to eat it. I cast shy glances at my disabled uncle (who had RA) in his chair in the corner of the room where I was sure he slept and ate as well, having never in all my years, seen him in any other spot but that. His ever present smile belying the twisted and swollen state of his hands and the pain that I can now sympathize with and which I now know he experienced but never showed or discussed.

The scent of my grandma's home made rolls came wafting from the kitchen inviting the begging for and prohibition of advance inspection of her wares. Placing dishes of the same grandmas neon colored bread and butter pickles on the table...and being permitted only small, pieces of her homemade hard candy, all of which tasted like anisette and licorice despite their bright colors, to hold us until the preparations were all complete and we gathered, noisy and wiggling to the table ...jumping in our excitement...and totally disregarding all of the undercurrents of the adult feuds and fractured loyalties.

There were a few Thanksgivings like that...But more frequently, there were the quiet kind, celebrated by my parents, my younger brother and myself. On these days, my parents would go to church, while my brother and I watched the Macy's Thanksgiving Day Parade on television and carried out our private tradition of making the centerpiece for the table. These consisted of -things like construction paper pilgrims or turkeys with fan-like folded tails which we proudly perched amidst the good china...the china which only came out of its hiding place in the china cabinet once or twice a year.

When my parents arrived back from church, soon delicious smells began to waft from the kitchen...where entrance was firmly denied until my mother got control of the preparations and things were ready to be carried to the table in the dining room...I don't recall much else about those holidays at home..except for the one, when my mom took the turkey from the oven and sat it on the counter for a few minutes to cool so that she could carve it....and while our backs were turned, our cat climbed up and had himself a nice Thanksgiving meal! Yes, we still ate that pre-sampled bird...just not the parts that had been already gnawed!

Now, my Thanksgivings are much different. Much sadder if you ask me...We have a tradition (about 3 years old, this tradition) that is so absurd that whenever I confess it to anyone, it prompts a good belly laugh from the listener. You see, WE (my husband, daughter and myself) go out for a sushi dinner. We are invariably the only customers in the restaurant each year...((I wonder why??)) and then out to a movie following dinner. Why??? Well, since my mom became unable to prepare the feast, and it is difficult for me to do so (in fact, there have been years that I've spent in the hospital for Thanksgiving), we have gravitated toward this absurd practice. As for me, I would SO much rather go to a friend's house to celebrate, it's not like we've never been asked,...but my husband is not terribly social (to be polite) ...and would not consent to this...I miss the noisy familial gatherings. The home cooked meal and the friendly camaraderie that should be part of this day are sadly absent in our quiet celebration. So, for a few years, I've attempted to rescue the day by cooking a Thanksgiving type of meal on the Sunday following the actual holiday. This year I have quite an elaborate menu planned and only am praying for the strength to pull it off. I know I will get no assistance so it will be a painful marathon, but I do it mostly for myself...to assuage the disappointment of the empty holiday that really should be so pregnant with meaning. And I hope that someday, when my daughter celebrates the holiday in whatever manner she should choose, that she will remember my attempts to restore some of the tradition to a holiday rendered bizarre by the preferences of my family. But nonetheless, I try to be grateful for the presence of the three of us at that meal and to enjoy their company during our unconventional celebration and to be thankful for each of them during these times we share together in our unorthodox method of acknowledging the day. And I am always thankful for the years when I am healthy enough to even participate in the celebration of the holiday.

So this week as you gobble your turkey...think of us, in that deserted Japanese restaurant with our plates of sushi....and try not to laugh.

Please note: Silence from me today.

Reason: I'm busy NOT whining.

Am I my Illness?

This question has plagued me recently.

It began with a concern expressed by my father that my blogs seem to be so focused on illness that he was worried that these diseases have consumed me and made me simply another extension of themselves.

This also has been a complaint of my husband...that "Cynthia" no longer exists, but only a walking mass of pain and illness.

My pastor has also worked to alert me to this danger (in subtler ways than my husband, I might add!) He used to tell me when I had the habit of saying "my" asthma....He told me "don't say "my" ...don't OWN it!" And so I've now made a huge effort to break that method of referring to the diseases that attack me...I don't say "my " arthritis, or "my" asthma anymore. I say "THE arthritis, or asthma" but is that merely semantics? It has been a good reminder, true, when I speak of it, not to make it a part of myself...but has it really effectively changed this mindset in me?

And if I am NOT an illness...then.....who am I???

Frankly, I've been an illness for the majority of my life. True, there were some years of respite, when my daughter was young - years when I was just "Cynthia, Bible Study teacher, leader in church...artist...just Cynthia: pilgrim. But then in the year 2000, a random germ lodged in my lungs ands caused pneumonia which caused THE asthma which was to plague my life with numerous hospitalizations and secondary diagnoses....This began the tumble into the pit of illness in which I now find myself floundering and struggling to stay afloat.

And then, four years ago, my mind once more crumpled under the weight of physical distress, according to my psychiatrist, and that 12 year sabbatical I'd taken from mental illness abruptly ended--making me, once again, Cynthia: mentally ill person or patient (as the case may be). And I can tell you very honestly that when your mind is betraying you to that extent...to the extent that you must question and doubt every thought and every perceptual experience, well, it's hard to find an identity apart from that either.

And I have to ask the question....if you are up to your neck in sewage, how is it that you can not stink??

Do you understand my point??
When every move I make is met with pain...When I am hindered at every single motion, every single attempt to do ANYTHING...well, then, it is extremely hard to be able to even think of myself as a Being apart from illness and pain. Believe me, I don't WANT to be an illness...I know some people with chronic illness who are all "woe is me" constantly about it...and I try REALLY REALLY hard not to fall into that pit...and I think generally, I'm successful at that...considering the impact these diseases have made on my life.

It is really hard to "get a life" when the ONLY time you get out of the house is to go to a doctor's office! Seriously, other than to go sometimes to church, those are the ONLY times I get out...(that and an occaional "pharmacy run"....). I don't get to run to bank or the store - I don't see people or have experiences outside of this house, outside of doctors and outside of the limitations of this body.

THAT IS WHAT MY LIFE CONSISTS OF!!

So tell me, who am I and what am I apart from lost hopes and current illness and pain? If you know the answer to that, please email me and let me know what it is, because I SERIOUSLY do not have an answer to that.

..............................
{post script)
I had pushed the "post" button and then I sat staring at the last paragraph...and it did not sit well with me.

Because you know who I am?
I'm Cynthia- priestess of the Living God.
I'm Cynthia- warrior in prayer
I'm Cynthia- Beloved One of the Most High.

And it has become too easy to forget that. Too easy to let those descriptions of me which several years ago were so all-consuming, to slip quietly into the background of a "former life"...but they are NOT things which you "once were" and now "are not"...No, I still own those personal descriptions and job titles. And I need now, when all else is lost to me, to grip them more firmly and own them more completely.

The Beginning of the End of the Beginning

This morning I was thinking "aloud" as I posted on a forum for disabled people on a site that I frequent...I copied some of my remarks there to share with you here and to explore further:

"I had determined yesterday that I would exercise today...but I'm very unsure of that now. My neck and back are letting me have the whatfor...so I'm not sure about moving around right now. This does get very discouraging...that even when I have the right intentions, my body manages to cancel them out. Sometimes I wonder if it really is worth pursuiing the good intentions anymore....Maybe I should just go with whatever is easy and comfortable instead of fighting back and kicking the same old wall over and over. When does the point come when you just allow yourself to rest and go with the flow?

I have a friend in the later stages of severe ankylosing spondilitis - a similar disease to mine, only she has had it longer and is very, very disabled by it. She has blogged recently about how hard she fought in the early years, to maintain independence and physical strength and normalcy, but now, as the disease is really kicking her butt, she is letting go and just resting in whereever it takes her. And I'm afraid she will not be much longer with us, because she really is very sick.

But when is it "okay" to do that? Do you beat your hands bloody on the walls that are ever encroaching, ever closing in on you...until you don't have an ounce of strength left? And why? For what? Why would it not be okay to relax much sooner and let it go where it may? I've already fought hard agaiinst my body and crippling illness for so many years now...I find that I'm more and more tired by the fight...and now, as my life is reduced to this room more and more, I find myself wondering WHY?? Why am I still fighting and trying so hard at something that is obviously a losing battle? Why not just gracefully admit defeat and relax?"

In other words, I am wondering, what makes it so "noble" to resist and fight when disease and limitations come? Why can it not be equally good to gracefully bow out while you are still standing, once you realize that the fight really IS going to be futile in the long run? Why is acceptance so frowned upon and resistance and struggling against the inevitable are looked at as noble and as the right thing to do? Why do we cling so hard to this life which is at best, temporary and painfilled? If we belong to the Lord, we KNOW that something so much better is around the bend. Why can we not say, "my work and my time of being useful here, is done...now I will await the next stage with eagerness?" Is this attitude really not one that we have adopted from the desperate, fearful world around us? They fear death so of course, they will fight it tooth and nail. But for me, it signifies an end to great sufferng....and being welcomed into a kingdom which is spectacular beyond all estimation and fantasy.

I do not mean that I should turn my back on every good and useful thing still left for me here on earth! NO! I should grasp these gifts also with eagerness from the hand of my Beloved Lord....But maybe I should grasp the endings as well as the beginnings? Maybe, when exercising becomes so painful and such an uphill struggle, I should just let it go ....maybe that phase in my life and abilities is over? Maybe I should instead seek what it is God has for me now in THIS stage? I can see real evidence of a shift in my "responsibilties" before God now...He definitely is moving my life in a different direction....Maybe I should seek to explore all the parameters of this new time rather than refusiing to let go of the prior time? Maybe my time of cookiing , cleaning, maintaining a home, being a "MOM and WIFE" -maybe that phase is drawing to a close as those responsiblities are very much out of my reach right now. They require a strenght I no longer have. Maybe now, as God seems to be moving me into the role of encourager and mentor and pray-er...maybe these are the things I need to pursue and focus on -without regret and without apology.

And when a certain thing becomes increasingly difficult, maybe I need to let it go and admit it is no longer in my grasp. The trick and where it gets sticky, is to make others realize that they cannot ask of me or demand of me tasks that belong to the roles that I can no longer fill. I don't think there is anything noble about beating dead horses. Nor is there anything noble about refusing to admit that one simply can't do something.

When I was a little giirl there was a woman in my church who at one time had a lovely operatic voice...
But she was losiing her hearing. And she refused to admit that her solos were no longer bringing pleasure to people but were exercises in endurance for us to listen to. she had lost all sense of pitch. And when the church finally broke this news to her and asked her to please not sing her solos any longer, in fury, she left the church. Now, was there a nobility in her persistance insinging?? Maybe.. Maybe a sad, pathetic kind of one. But I think, it would have been a greater and more grace-ful strength for her to back down and admit that her season as a soloist had past..

And now, I have been told by a surgeon who is respected in the field, that nothing can be done to help reduce my pain or restore my strength and ability to move around to me. My husband is insisting I go to specialist after specialist and seek another opinion. You know what"? I'm sure if I try long enough and hard enough, I will find someone cavalier enough to operate on me. But to what end?? My doctor has explained that such surgery will lead to greater immobility and equal pain. Why should I risk that?? To satisfy my HUSBAND'S inability to recognize a dead horse when he sees one?? No, I say, leave me in peace. do not drag me all over creation in a task that is futile. Let me go.
LET GO!

I can accept that. Why can't they?

A Beach and a Graveyard

Today I have given myself permission to mourn, to weep, and to feel sorry for myself.
Tomorrow will be another story ...because enough is enough....

This is an exerpt from a letter I wrote today.

I'm sure you are familiar with the (corny) poem, called "Footprints"?? Well, this is one of those times my friend, when there are only one set of footprints on the beach of our lives...because we are securely held in Jesus's strong arms and he is carrying us, because he knows we cannot walk this mile on our own.

Imagine that with great detail....those muscular carpenter arms...those scarred hands....and those loving, tender, smiling eyes. We do not have to exert any effort right now...because there is little or nothing we can do to help ourselves...except to relax into his arms and not to resist or insist on going ahead on our own measly power.

I haven't done this yet...but I am going to do it this afternoon...I'm going to tell him, in great detail how this news is making me feel. I know he knows already...but I am putting it into words, more for my own benefit than for his....Although he will enjoy it that I trust him enough to share something so honest and personal with him. And he won't even mind it if I yell at him a little bit about it. I need to do this...so that I won't mourn any longer than a day or two...and so that my sorrow doesn't turn into a weight of bitterness and self pity that will rapidly turn ugly.

Hang in there, beloved of the Lord, He will get us both through this. He's promised to.
Trust in that and cling to it. And yell and scream if you need to.

(Take a look at my other blog
for the post dated for today...and you will see why this self-proclaimed day of mourning.)

Thriving Hope and Crushed Jeeps

I just opened a new CD (my first new CD in recent memory...). It's "The Jesus Record" by Rich Mullins. It was published posthumously because just nine days after his jeep flipped over and he was thrown from the car and then struck by a passing truck, he recorded a micro cassette of the lyrics of many of the songs on this album. And just that fast, he went "out like Elijah, in a chariot of fire", just as the desire he expressed in an earlier song, eerily forecast. And just that quickly, Rich Mullins found himself face to face with the Jesus he so passionately worshiped.

Last week, a young lady whom I've befriended as a result of her visiting my blog and leaving me many comments over the past several years, told me of how greatly a song from this CD had ministered to her. It's called, "My Deliverer", and she sent me a link to a YouTube video of this song http://www.youtube.com/watch?v=Ac4GnpqXQAQ&p=66E44DE698355A37(which is as moving as is the song itself. As I listened over and over to this song, (about which my Jewish musician husband just commented on as he listened to it playing moments ago, "That's the best Christian song I've ever heard.") an image came to my mind. I pictured Jesus coming again, as he promised he would...coming to gather his people and initiate the ending to the rule of sin, death, injustice and disease on this cursed planet. And as he appears in the sky, from every speaker, every car radio, every announcement system in every store, from every stereo and on every iPod, this song suddenly beginning to peal out it's proclamation of victory and freedom for the captives of the wrongs of this life, the hopeless and the weary, announcing his return.

It's images like this one that get me through long days of pain and I'm sure this picture also encourages Christians in other countries who are beaten, imprisoned and tortured for their faith. I believe we can endure anything if only we have this hope...this KNOWLEDGE that Our Deliverer is Coming! If I didn't know this to be true, I would certainly, once more, quite immediately, plummet back into the depths of sickness and hopeless despair that once held me bound and tied as I struggled with the onset of mental illness in my early twenties. Without this knowledge and without the knowledge that I am among those he is coming to gather, I don't see how anyone can survive for even a moment. All optimism is a foolish pretense; a self delusion. All desperate hopes that one day society will right itself or find some kind of "enlightenment" are just that, desperate and based on nothing solid... Nothing that a person can grab hold of and really TRUST in.

The promises of God are Yes and Amen, (or Affirmative and true) and they are fulfilled in the person of Christ Jesus and because of what he has accomplished on our behalf. These are something you can hold onto. They are as certain and as trustworthy as is his very name. Did you know that "Jesus" is the Greek word for his real Hebrew name which is Y'shua (in English, that would be "Joshua") and it means "SAlvation" or "he who delivers"? It is the name that is above all names. The name by which we are saved. He is our deliverer. And he is coming!!!

Piggyback with God, Knee-Deep in Risk

I went to my pain management doctor today...it was he who ordered the MRIs of my spine. He looked at them and went over them with me. What a big mess is in there! No way to really take care of it all: the damage is too profuse and some of it, too close to my brain stem to operate on. However there are two areas, one in lumbar and one in cervical spines....which look like they could potentially be improved by surgery. So I will add those two surgeries to my list of "things to do" along with my second hip replacement. This coming winter, following the holidays is when I intend to try to get all of this out of the way...Of course with that many major surgeries in a row, especially when you have health issues like I do, they may want to wait a bit in between them to give me a longer chance to recover so that I will make it through the successive ones.

I am trying to keep my thought-tongue out of the gap in my brain-teeth where all these worries are gathering. No need to dwell on the "what if's " or even on the problems which really are likely to occur as complications of these surgeries. Worrying about them will not stop them from occurrng. This is one of those "Let go and let God" moments. All I need to determine for myself is: can I go on the way I am? And is what I stand to gain, worth these risks? For the first question, the answer is a big, fat "NO!"...And the answer to the second is more complicated. There are several liklihoods as a result of these surgeries that are truly distressing to me --and I need to get more information as to whether or not they are preventable and what the chances of them occuring are before I can answer that question. And the problem is that there may be no one who can give me those answers because they necessitate an ability to foretell the future, in order to be able to answer.

AS far as blowing away an entire year in surgery and recovery...well. I will just have to look at it positiively and prepare for it as best as I can. My husband is gettiing me a Kindle because I've always loved to read and it is becoming more and more difficult to hold and to see a regular book due to the arthritis and failing eyesight. (My birthday is in early December so this will be an early present for that and also for Christmas).... And I am planning on finally repairing my laptop. BOY, will I ever be happy to sign onto that and see all my files that I've wished I had access to for so long...All of my writing and pictures for example. I have a book manuscript on there which has been sidelined for all of these months that I am eager to return to work on. Both of those occurrences will make my recovery time more tolerable and useful...If I could finally get that book done, it would be awesome.


The other thing I need to attend to prior to the surgery, is getting an acceptable mask for my BIPAP machine. The one I have is not working as it falls apart almost everry night in the middle of the night. Need to get working on that problem SOON.

So, this is a time when I am asking God to just pick me up and carry me, because there's no way I can walk through this minefield on my own. And there's also, in my own nature, no way to remain positive in the face of it all. I am just too inclined toward negativity and worry. But God has been working on me in this regard...and I think that this will be a big "final exam" to see whether or not I've really learned the lessons he's been teaching me. (I DO feel like he snuck the final test in at the end of the first quarter, before I was really prepared for it...but he knows better than me what I am capable of tolerating). And he knows the beginning from the end. I honestly don't know where I will end up....or rather, HOW I will end up. I know WHERE I will end up, and that is in the hands of my Lord. Which is where I already am now...so I don't need to have any worries there. I don't have far to travel!

Bed bugs, Bunnies,and Fairy Tales....

"Sleep tight; don't let the biter bugs bite." my mom pulled the covers up to my chin and turned out the light with a kiss. I snuggled down into the bed to go off to the land of dreams....cozy in the knowledge that I was loved.

Okay, so maybe that scene is a bit idealized. The reality was something more like being told to go upstairs to bed several times and stalling until the very last "preview" of the upcoming episodes of Emergency, Adam 12, or the Brady Bunch was done. Then slooooowwwly dragging my rear end up the stairs to see how long I could delay until my dad stood up from his chair and took a threatening step toward me, then I would scamper up as quickly as I could, calling "good night" from the landing and I would hear my mom call back with the aforesaid phrase.

Then I would grab my current book and come into the glow of the hall light and, sitting on the cold floor, pick up the tale until my dad and mom would make their way up at ten p.m., to go to sleep in their room, at which point I would grab my book and scamper to my bed so that I could lie there pretending to sleep when they would stop in my room seconds later to check on me.

I don' t know for how many years I successfully pulled off that trick of reading in the hallway light's glow, under the pretense of fear of the dark in order to make them keep that light on until they went to bed and I was ostensibly sound asleep. I used to keep my small desk light on. That is, until my dad one day got wise and went to touch the light to see if it was cool....and burned several layers of skin off on the bulb. Yeah. He was NOT too happy with me that night.

As an adult I thought of that bizarre good night blessing about the "biter bugs"...what the heck are "biter bugs"? I'd wondered about that occasionally as a child but accepted it blindly as kids do things that later, they realize made NO sense at all.

For example.
I had a rabbit...a white rabbit that I'd been given one Easter as a gift. Now, I was quite young then....these were in the days in Colorado long before I'd strolled curiously through a kindergarten door. They were long enough ago, that when my mom let Peter hop around free in the outer porch/laundry area of our home in Denver....I would , in terror, retreat to the top of the wash machine....looking at him with fear and fascination. He was cute; WHEN HE WAS IN HIS CAGE...when he was loose, he was a ferocious wild animal; of this I was sure.

I used to feed him blades of grass in his hutch in the back yard...poking them through the chicken wire front and watching them disappear in quick nibbles of his sharp, square front teeth. Yes, he was cute all right ....IN HIS HUTCH.

One sad day...I believe it was also a Sunday, as we were amidst the process of dressing for church, that my mother told me that Peter had gone the night before to bunny-rabbit-heaven....OoooohHH no! "Why mom?"
This was my first experience with death...and it was mysterious to me...Why would something be alive and moving one minute and dead and still the next?
My mom paused...and faltered...and then dropped the ball in a classic fumble:
"I guess Daddy fed him too much grass."
OH, so this was all DADDY's fault. My four year old self, tensed in anger at my foolish father. How could he have made such a dumb mistake? Didn't he know that would happen to MY rabbit?

And for YEARS I believed with all my heart that my dad had killed my rabbit by feeding him too much grass.

I don' t know when the epiphany came that, WAIT A MINUTE! Rabbits don't die from having a little too much grass!!! Peter's death WASN'T my dad's fault!! And a great load of anger at my dad which had existed in some subconscious level of my being suddenly dissolved in to the light of adult reason.

Well, the biter bugs were like that too. I had no idea what they were, but I sure as heck didn't want them nibbing on my little toes....

As an adult finally one day I made the connection between "biter bugs" and "bed bugs"

....UGH. REALLY?

Who in their right mind would plant the idea of bedbugs into a five year old 's mind as he was ON HIS WAY to the precarious precinct of dreams and nightmares....??
But parents have done it for generations.

I just had an evil thought.

One day , I'm going to hang that rhyme on my husband as he makes his way to bed! His latest obsession is with the current plague of bedbug infestations in the greater NYC area.
I wonder if he would even be able to get INTO his bed with that thought fresh in his mind??

Odd that we give a child a burden to bear that some adults can't even handle. And kids, in their blindly accepting, ignorant courage, merely hear it as a familiar, comfortable b'rucha. (blessing).
Children can accept and integrate so many things and incorporate them as normal...things that should NOT be accepted...and things that adults should NOT hang on them....and I'm not talking about bedbugs and fairy tales either...

Oh Lord, protect and bless these innocent ones...

A Fantasy of Favorites

I'm soaring in a vast dark space...A light a bright flare of creation ignites and shoots above the horizonless enormity of emptiness....And another voice enters and the two twist and gyrate, writhing about one another in a lovers' embrace...Sparks fly from their passion play. Voice after voice joins until it is a glorious cacaphony, ordered yet just verging on mass confusion and tiptoeing the bounds self control. A last voice; The Bass, voice of God booms above the rest....does it shout? NO, It SINGS along with the symphony of the stars; dancing in their passionate delight of the night that so gloriously offsets their crystalline light.
These images are born in thought as I sit with my ear buds in and my player playing Virgil Fox's renditon of Bach's Organ Fugue in G Minor.

And now, the scene shifts. A glorious and opulent hall, where the voices of a great crowd explode into the echoes of silence. Hallelujah! The Lord God Omnipotent reigneth! The king forgets about his itchy wig and for the fact that he's sat for hours now listening to this debut....He leans forward, the hairs standing up on the back of his neck. And he, the king, cannot sit in the presence of this genius...nay, in the presence of God Omnipotent...without conscious thought he rises to his feet...and is oblivious to the fact that the entire assmbly is too, on their feet--on their toes, straining to absorb every delicious droplet of sound. Spirits soar in unison at the majesty of God and the genius of Handel. Hallelujah!

The last scene: the concert hall is filled with a low buzz of anticipation....what would this madman virtuouso do tonight?? What would he do to send them home glowing in the light of amazement or reeling in the throes of mockery and humerous outrage?

The lone figure paced, with shoulders hunched against his fear, in the wings, as he stared out at the instruments tuning and settling into position in their seats. Strains of the music he'd heard for months in his head--constantly waking him, leaving him no peace til he'd captured the notations began to twitter as they tune...The bass rumble of Jesu joy of Mans' Desiring muttered by the bass soloist; the soaring flight of the final climactic convulsion of sound. Would the marks he'd scrawled on the paper reflect the chaotic cadence which had endlessly played in his head?? He didn't know for sure. Would he be booed and laughed off of the conductor's block?? Fear gripped his bowels....Regardless, the time is....NOW,

Onto the stage he burst and without pausing for applause that he could not hear to subside, he grabbed his baton and they were off. By the fourth movement he had their full attention....But he himself was simply lost in the sounds of the piece that were booming in his own mind...The real music which detonated and soared about the concert hall was lost to him. He'd insisted that they play the conclusion at full volume so that he could at least feel the satisfaction of the vibrations of tympany....the chorus began the culmination which built into several intense levels of joyful tension which teetered on climax and then just as the anticipation became unbearable, it backed off only to build again and again to new unimaginable heights...Till at last, in a glorious outburst of passion and joy with the choral voices winding with the voices of the orchestra until all was glorious riot of sound. finally joining together in the ultimate explosion of delight...

For a second there was a stunned silence as the orchestra ceased in completely drained exhaustion and joy. Beethoven, threw down his baton in utter defeat. They hated it. He knew it. He was the mockery of tomorrow's headlines.
He stormed from the stage without casting a glance in the direction of the audience who had by now let out a shout of joy and approval...
Their applause rocked the concert hall and Beethoven wondered from the wings, whether it was thundering outside. The concert master hurried to the wings and gripped him by the arm and guided him again to center stage where the audience was going mad in paroxysms of approval littering the stage with flowers, money, jewelery...anything they had to offer this masterful creator of a new paragon of excellence. A new manifestation of genius.

... And Beethoven went home still locked in his silent world....never having heard the beauty of his creation or the sounds of their cheers....And died very soon after. But now....the stars still sing the Ninth Symphony in the heavens...and maybe he can hear it from where ever he now is. I hope so. Because he deserves the joy that this piece has brought to me and to millions of others in the centuries since.

A Cloak no one Wants

It's 3:15 on a Sunday night. (oops. Monday morning)...Another week. A lot is going on in my life. A lot that wears the garb of nothingness. My life has been more and more consisting of an 10 x (maybe) 15 bedroom, a recliner, and a bed. In the past 36 hours I've been here exclusively, except for a foolish attempt to attend Sunday
School and church. It was foolish because the entire night before was spent writhing in my bed struggling to endure pain...I took my herbal bath, that I believe I've told you about, and it worked so well, that I thought I was "good for the go," but--as I discovered at about ten minutes into the class, as pain shot down my back to my legs and from my neck through my fingertips to such a degree that I literally had to bite a lip to keep from screaming--I was NOT okay. My blessed friend Betty (I've introduced you to her already also) offered to drive me home as she saw me hobble toward the church after abandoning my post where I was holding up the wall in the classroom...Even standing was not alleviating the pain...I needed to be horizontal like NOW.

So all that to say, that my day was completely spent in bed and when that hurt too much I would switch to the recliner for a change of position.
So it would appear that my life is NOT all that thrilling. But there is so much internal stuff to come to terms with right now in terms of my aborted future...that I actually feel BUSY...consumed by this process. It's a lot to chew...to find that you are not going to have much moreof a future, Both literally and functionally. And this is something that my family has not sat down and talked about much. We have been walking circles again about that mound under the bedclothes...afraid to touch it for fear it- (or we)- will explode.

How does one make their wishes known to a family that won't talk about it and who doesn't agree with or accept those wishes? And who can't even deal with bringing up the topic. In fact, they've been avoiding me ALTOGETHER. It makes for a very lonely chapter close...and quite an unsatisfactory ending to the story. Have you ever read a book that was pretty or even very good book whose ending just sucked?? One that left you with a bad taste in your mouth and a dissatisfied heart? I've literally thrown a book at the wall after it dared to disappoint me in that manner. So against what wall can I throw my family?

I do not want to spend the days, months or years that I have left alone and forgotten and unvisited in this cubicle!! I praise my Lord for the gift of the internet and for my friend who has loaned me this laptop! Without that, I shudder to think of what my life would be like! I wish my family...mom, dad, brother even, and my husband and daughter would draw around me and we could engage in conversation and enjoy the bonds that we have or used to have. But instead everyone clutches anger, resentment, misperception, and hurt close around them like a blanket...And that blanket is their warmth...never mind that there's a nice warm fire available, right here!

The very worst part about it is that,once I'm gone, I know that they will have to live with it. They will be stuck with the ending to that book. For me, it won't matter any longer...I'll be in Heaven and SO happy to be there and out of pain, walking and talking with Jesus...and I'll be looking at them still here...now wrapped in a cloak of regret and guilt in addition to all the anger etc. (which I'm sure, still has a stranglegrip on their throats and adds heavy weight to their backs at all times. Why do people choose to live so foolishly...so self destructively? It is beyond my grasp.

My husband's family is all gone now. All three parents and step parents gone within ten years of each other. And both my daughter and husband still are suffering and burdened by their private regrets with each of those lives. Things that went unrighted....NOT because the parent or grandparent would not have forgiven...but because the chld was too proud to ask and to make amends.

I don't want to die with regrets like that.
And I don't want to be the source of any myself.

Herbal Baths and Worship

It's 1:00 AM and I am in severe pain...sorry guys, this post may not be a rib-tickler. I think maybe you are going to be introduced to some of those "darker" thoughts that I mention in the intro to this website.

Pain is pretty much a given in my life...I can't think of a single moment in the past maybe...I don't know...I was going to say 5 years...but it could well be 40 or 50 ....(and yeah, I KNOW I'm not yet 50!) Seem like every moment since 1986--when my spine first began it's rebellion, has HURT....! And I'm not talking about a mildly -aching; annoying--but --forgettable kind of hurt....I mean the kind that when you are trying to carry on a life or death important conversation with someone, you can barely focus on or even HEAR their words of the pain that tries to come to the foreground and consume you - likeI picture nerve gas in World War I....creeping along the ground, gradually rising until it chokes out any hope of air for breath.

In the morning, my biggest problem is my arthritic disease. (PsA to be official, but sometimes I call it RA for clarity, because many people do not know what "PsA" is ((It's Psoriatic Arthritis and it has not been satisfied with consuming hands, hips, shoulders.....No, it MUST gobble up my spine as well....)) ) It stiffens me and every vertebra aches with a terrible and intense pain....movement is extremely difficult...yet that is what I need to and must try to do....My inclination is to huddle in my recliner and moan....but I try to get moving. Sometimes lately, after about a hour of the "huddle thing", I put on the video: Richard Simmons "Stretching to the Classics" - an exercise video where he doesn't speak merely leads you in a series of gentle stretchesd. Or, I'll do a quick Pilates or yoga workout.....

I do yoga. I know that among some of my friends and relatives - who are conservative, evangelical Christians (If we must put a label on it, I guess that would be it) - yoga is not always smiled upon because of its ties to Eastern Religion. But, as I heard a practitioner of yoga once say: yoga predated the Eastern Religions by several thousand years...To say that it is wrong, is like saying Prayer is wrong because other faiths practice it too... And that makes a lot of sense to me. My rheumy told me that yoga was probably my only hope to keep my spine from fusing in ways it should not fuse and crippling me like the hunchback of Notre Dame or something. To me, it is an EXERCISE...not a faith. I do not participate in the meditation part of the videos...during that time I merely talk to the Lord and try to relax my screaming hurting body...And I find that this helps. It also keeps my muscles in some degree of tone that they would not have otherwise.


I have a concoction which I call my "Pain Bath"...It is Epsom Salts combined with a combination of about 10 (guessing at that number) herbs - herbs which I've selected because of their pain relieving properties. I chose each specific herb because it covers a different type of pain,or works in a different manner than the rest. Some are for nerve pain, others for muscle aches....some are specific to arthritis, some for inflammation, etc.. And I take a fabric drawstring muslin bag (about 4"x2" large) and fill it with scoopfuls of this mixture (and it has lots of lavender and chamomile, so it smells lovely also)... I fill the tub with pure hot water...(and PLEASE, if you are doing something like this at home, wait for the water to cool sufficiently before you try getting into it!) I toss in the herb bag (closed with a twist tie) into the water and wait until it has steeped a bit and the water is still hot, but cool enough not to burn me...and soak myself. During my bath I hold the wet bag of herbs against whatever specific places are hurting me the worst at the moment...usually neck , hips, and sometimes hands--like a poultice. Occasionally soaking and squeezing it to get more of the medicine into the bath water... And when I'm done with this WHOLE process (which can take close to three hours total), only then can I stand to dress myself and go on with my day. On days when I have to be somewhere early - which I usually try to avoid (but church prayer time prior to Sunday School time, cannot be rescheduled, so I just either start the process at 4:00 AM or else I skip some of it --usually the yoga and Pilates-or else I take a very hot shower instead of the bath before getting dressed.


But no matter what, the first hour or two must be spent huddled in the recliner praying that God let me die...and that He would simultaneously get me through this day without attempting to take that decision out of His hands. I'm not depressed. Don't misunderstand me. I merely hurt more than any person should hurt...and sometimes I feel like one more day of it is demanding way more endurance than I have on hand... But all of this is not without a bright side. And I don't mean only that I get to park in disabled parking either! The bright side is this: by submitting and yielding to this which is God's plan for me right now, God has shown me a side of Himself that I never would have otherwise known. It is this side of Him that, on days when I'm so leveled by pain that I can't consider budging from the bed or recliner, I often just raise my hands to heaven and worship Him...because there is little else I can do with the whole situation but praise my God that He know what He's doing , even though I don't. I don't question Him , as I think I've mentioned before. He is GOD, Creator and Sustainer of the Universe... I think He certainly knows, better than me, what is best...not only for His purposes,...but for my life as well.

I've had times when second by second ticks by and each second I can only pray for God to strengthen me to get through the next one. And somehow, miraculously, He does. I'm listening now to the song "Hallelujah " by Hillsong. It is my very favorite worship song....It brings me right to the throne room of God. Check it out if you get the chance. Sometimes when I'm alone in my room, hurting, praying, and listening to music like this, I have to just lift my hurting arms toward heaven and keep them there for a while...worshiping the God-who-knows-better-than-I. Because of all of this, I've had the blessing of seeing a side of Y'shua, that many people never get to see. It's the side of the Savior hanging and suffering on that cross...and sometimes I think...I'm so glad that Jesus knew pain even worse than mine...Because then I can talk to Him about it.. He is not some distant, removed God out in the universe...but the one sitting on the bed next to me holding my hands and saying , "Cyn, I know. I know how you are feeling. You have to just trust me with this one. Okay?"

And I do.