We got a new refrigerator delivered today. I’m pretty psyched about it…and SO so grateful that we didn’t get one that was even a quarter of an inch bigger…because as it was, the delivery men had to take the doors off of it and practically Vaseline it to get it into the door !  And it turns out, according to the delivery guy that we chose   a very good line from a company that is less than laudable in their lower lines…in fact that’s what we had that we were getting rid of –and GOOD RIDDANCE.  But this particular line is supposed to be very good…and it is what the delivery man got for his own father.

I went to the doctor yesterday because my blood pressure  has been so high a stroke is a real danger.  He’s quite worried about it…I talk more about my visit at http://cynthialottvogel.blogspot.com/2011/11/when-is-medicine-absurd.html  ….I’ve honestly had enough of medical problems, doctors, medical bills, pain and a body that is disintegrating. But enough of that.

It’s getting to be dinner time and I guess I need to face the reality of the decision of  what to make. I’ m right now very ticked at my husband…who spent a TON of money on NutraSystem food…and now after two days on the diet…is giving up and eating other stuff claiming he’ll “start next week” …Uh huh.  We ‘ve been down this road before.  With at least three other diet plans I could name where you buy prepared food.( one was a liquid diet!)…NONE of them lasted for long and ALL were expensive.  So NOW, he’s eating MY food because he doesn’t have the money to buy his own groceries now…having spent it all …And I don’t have nearly enough money OR food to make it through the month even for my self. …You know what dude? EAT YOUR OWN FOOD that you just spent over $300 on!  Sorry, maybe that’s not very Christian of me…but  HE’s the one who insisted on my paying for all my own expenses…so if you want it separate…KEEP IT SEPARATE.  Not , “Pay for your own…and I”ll eat yours too.”

OH well, better go…syl

I’ve been still online a lot.  Getting used to an empty nest.  My daughter has moved out and is finally happy and doing really well. Thank You, Lord!  Now I can die in peace. LOL.  No, seriously, I’d told God to please let me live until I could see her settled and okay.  It would be nice to make her wedding though…so that will maybe be my new request, because I know if I missed that, SHE would be really missing me that day, and that would be just sad.  She’s found and is living with a man 13 years older than her who is a WONDERFUL man…and who has been SO good for her.  This is the first time in her whole life that I’ve seen her really content and happy and not hating herself and the world.  And that does a mom’s heart good.  We’ve always been very very close  and it really pained me that I could not fill in all the gaps in her life. But she ‘s found some one who is doing a great job of filling many, and teaching her how to fill many of the others herself.  NOW to have her find the Lord and I would be ecstatic.

Physically; well, I continue to decompose before I’m in the grave : ( ugh…what a metaphor. : )  My arms now are falling apart.   Both shoulders and an elbow are ready for and needing to be replaced.  (which makes climbing the monkey bars a real challenge!!)    My first shoulder surgery had been scheduled for next Tuesday but at the “last minute” I canceled it.  It has a major and long recovery period during which time I will be very disabled and will need lots of help.  I am not not going to find any of that help in my household.  And things are kind of topsy turvy here at the moment because my husband has been extremely depressed and suicidal…(yeah, it’s HIS turn now)  and I can’t dump that burden on him as well.  I’ve decided to opt for an arthroscopic surgery of my elbow first, because really that is what hurts the worst.  And then I will be in a much better spot later on to have the shoulder done because I’ll have at least some use of that arm to rely on during recovery from the shoulder.

Enough of all that.  Because the rest of the story is all something like “pain yada yada pain yada yada….” and that just gets like “will you SHUT UP ALREADY about your freakin pain!!”  (Wow, that last sentence sounded like I was about 15.  Actually during a first time phone conversation recently with an internet friend he told me I sound about 15 years old.  I didn’t know whether to smack him or thank him. haha. Not so sure that it was a compliment. I think he was just referring to my young sounding voice….but still fifteen??? Thank God I’m NOT fifteen …would NOT want to have to relive those first 30 years for NOTHIN’.  And then the last five haven’t been so hot either…..

So some rather exciting things have happened lately.

I wrote a letter in response to an appeal for letters from readers of Assist News Service articles (an email subscription I get of a news service for Christians that is distributed world wide I believe) telling of how the reader uses their articles.  So I wrote it…and dang it, if my big ol’ mug wasn’t published first thing in the article and practically my whole letter quoted.  And then a few days later, a package arrived from the wife of the newsreporter who wrote the article and she wrote me a lovely note along with the gift….so one thing led to anther and I was asked to write my “story” for an ANS article! And they allotted me 2500 words!  That’s a LARGE article!  I’m pretty psyched about the opportunity… When it comes out I will give the link to the article here so you can read it if you like.

Well, that’s enough of a blow by blow for now.

I’ll try to make it back before another multiple of months passes.

Blessings.

Life can make me neglect to live.

• Life can make me not have time to draw sustenance for the things and the Ones who make me live.

• Neglect springs from lack.

• “For every time there is a season” or in other words: “For every thing there is an appointed, designated time.”

• I.o.w. we should never fear that we will not have the time for something necessary or beneficial.  If we are running out of time, then we are spending it on things which do not meet one of those two criteria.  God has given us sufficient moments for every assignment He gives us.  Even if it’s taking a shower.  Or getting a night’s sleep.  Or having coffee with a hurting friend….or when we are hurting and need a friend.

• God does not short us on time to do the things which feed our soul.  And primarily, that includes spending time with him.  Prayer.  The Words of Life.  Do not starve your soul.

I’m in so much pain I can only think of heaven. I’ve been writhing and moaning in my twisted sheets all night long

I feel like I can’t take another hour of this…let alone a lifetime.

God’s purposes are a mystery to me now.  I know him too well to suggest he is less than Good and Loving….but seriously folks, What on earth or in heaven is he doing??

I first heard this song at my Bible study when the leader’s wife played it for us. I broke down into tears…and then sobs. this is the message and experience of my heart and life. And here it is expressed so beautifully. Blessings are not always sugar-coated. Lots of times they taste painfully like medicine.

As soon as I’ve recovered a bit from that , but hopefully before the end of the year, I will be having elbow surgery on the other arm… I NEED a replacement there, but due to my “young” age, have to wait…He didn’t say for how long! This sucka HURTS!

THEN, the other shoulder needs to be redone as well.

And THEN maybe we can focus a bit on the knees.

Or not.

Maybe we can just say, “enough is enough” and I’ll live as long as I can manage at home, until it becomes even more apparent that it’s time for an assisted living facility. YIKES. I know that that time is rapidly approaching. If it were possible to say, ‘Well, once I get these surgeries out of the way, I’ll be doing much better,” then it would be silly to do that. But realistically speaking, my spine is disintegrating much too quickly for that to happen. And that cannot be repaired or replaced. So what, really, is the point of enduring these surgeries? What is the point of jeapordizing my mental status by risking the post surgical confusion and psychosis that occur now follwoing each experience of anesthesia?

I’m going through some major emotional transitioning as I am beginning to realize, for the first time really, that “This is no joke. And it’s not going to go away”. Honestly, I’m still quite a ways away from that recognition or rather ACCEPTING that…because really, how can something like this happen to someone who is only 19? (Ok…almost 49, but it FEELS like I still must be a young and strong adult.) My thirties were great years. How can it be that ten short years later, I’m ready to be thinking of nursing homes? It just CAN”T be, that’ s why. This is still a bad dream and i will wake up.

But I have a feeling that that “waking up” won’t occur til Heaven. More and more, my heart and mind are fixed there. it truly is my only hope.

My editor /publisher and I decided that we have “irreconcilable differences’ and are parting ways.  Mostly because he’s looking for a sensationalized, dramatized, story with a tidy, Happily -ever-after ending.  And sorry.  I just don’t have one for him.  If he wants a period on the end of my “sentence” then he’ll have to wait until death do us part.  The fact is – the very POINT of my whole story is- that my  life (anyone’s life who has sz or suffers otherwise) is HARD. And there are no easy answers. But the message of my book is how to find hope even when there is no cure. It’s the story of how God has given me those “Treasures of Darkness” that are mentioned in Isaiah 45.  and the best  is of these treasures are a relationship with the God of hope…and the promise of Heaven.  that wasn’t enough of a solution for my editor.

And i refused to put schizophrenia neatly into the mold of the public’s skewed understanding of it.  And well,  this didn’t go over well.  One does NOT apparently, (especially, a new , unpublished author) have the right to argue or even differ with their editor.  Ooops. lol.  No, honestly, I did it with eyes wide open, knowing it would probably mean the axe to my book with this publishing company at least.  but I had to ask myself, “could I live with myself knowing I had perpetuated the very ignorant ideas and prejudices that I HATE in others?? NOPE.  Not even for a very big paycheck.  Its not worth it to me.

so friends….I’m now “unemployed” once more.  And honestly, it’s a very good thing. Because I’m on the verge of 3-5 more major surgeries to replace destroyed joints.  And each time I have anesthesia….you KNOW what happens; months of psychosis.  How can one work on a book like that?  You can’t.

I’m watching my body steadily, speedily,  decline.  M y pain increases almost daily.  I’ve fallen twice in the past two days.  It’s getting to the place where the trips out, do not justify the resultant pain.  My husband is mentioning the nursing home more and more frequently.  It’s coming.  I can hear those dadum dadum tones like with the approach of Jaws (for you old timers or movie buffs)…It is coming faster than I can believe.

And today I met with my rheumy.  And I listened as once more she twisted her hands and said, “My hands are tied…there’s nothing I can give you.  Everything is either contraindicated because of your other medical conditions and history, or you’ve already tried it and had a reaction to it, or it was ineffective.. the one category of drugs you need (biologics) you cannot take because of the huge risk of infection to you.  there is nothing else I can do.” HISS  BOO!

WELL there IS one drug we haven’t tried.

It’s a far out, long shot.  It’s hugely risky.  It’s NOT a drug of choice for this disease.  It’s made even more risky by the other meds i take.  And I asked her…begged her in fact…today to give it to me.

Finally she agreed.

I can’t just sit by and do nothing.

I’d rather burn out than fade away.

If you know what I mean.

My life has often overwhelmed me lately.   I have a long long LONG list of “I shoulds” and such incredibly limited energy that it seems also as if I am limited – severely- in my available time.  How can this be, since I rarely leave home, am officially unemployed and have almost no other commitments?  Well, the truth is that the only time I really have available is the maybe two hours which come after spending between one and three hours being unable to move or function in the morning due to pain and stiffness, and before exhaustion and pain strike in intolerable levels, forcing me to lie down or dawdle online for the remainder of the day.  Two hours. In which to do laundry, run errands, have appointments, do yesterday’s dishes (because I’m always a day behind), work on my book–in short, to do anything that requires physical or mental effort.  That makes for a very short day.

Usually I write my blogs in the teeny tiny hours of  the night, once my West Coast friends have gone to sleep and before my UK friends have woken up.  These are the loneliest  hardest hours of the night.  These are the hours when it’s just my pain and me….And too often , I forget to invite God in to make a threesome.  And I struggle and deal with it alone, and to distract myself, I blog.  Blogging , for me, is a conversation.  It is either a conversation with myself ,  or one with you, my -then absent- readers.  It makes the night a little less lonely.  HOWEVER, (and first, I must ask you this: Do any of you have this rule:”NEVER NEVER NEVER mail emails which you’ve written at night, unless you’ve read and approved of them in the light of day, preferably three days later?”  I’ve written some real doozies: Missiles which have inspired self hatred and massive mortification for months following.) I have occasionally (lol) written blog posts which reeked of poor judgement of skewed perspectives…all because they  were written at night (and NO, it couldn’t have anything to do with the fact that I’m mentally ill !)

So, for a change in pace, I am writing this in midafternoon, as the rains of Irene fall outside my window…and the long stretch of the storm lies ahead of me.

thank you for sticking by this blog….for continuing to once, in a while, check to see what’s new.

I am sorry that I’ve been such an “absentee blogger”…it’s just that my life has demanded more of my attention than usual.  And I warn you, that it may continue this way indefinitely as I work on and publish this book.  But then you can brag and say, “I knew her when…”

toodles.

My daughter is coming home for weekend  tomorrow….She moved out less than aweek ago and already the thought of seeing her has an added thrill of pleasure: absence and fond hearts and all that.  She is finding out who she really is amongst the clutter of disjointed family issues coming from two mentally ill parents.  We’ve always thought that she too, suffers from this psychic curse – ever since 4th grade when she stopped eating due to fear of vomiting in public….which was when she received her first diagnosis and went onto medicine.  But I have to wonder, as thunder bowls it’s way across the sky,  Is there really anything wrong with her?  My husband has her made out to be the sickest one among us…but I tend  to believe that she is a “normal” in need of God and a healthy family.  The healthy family may be impossible to provide…unless she is able to build one herself.  Her man seems to be exceptionally normal and healthy in those areas departments….maybe he can lead her into normalcy.  But I know, better than maybe anyone, how important desire is to the successful outcome of any kind of health.  Just as physical fitness requires an investment and commitment which MUST be initiated in drive….so too, is mental health.  It’s when the desire slips; when tiredness or lack of interest set in; when the goal is not central in your sight….then the plague of entropy and ones’ natural inclinations will begin to take charge and the tumble can be often swift.

Mental health takes vigilance.  Physical health, too ,must be an energetic pursuit and the necessary drive must be strongly rooted in the ability to conceive of possibilities and outcome.  For example…it must be understood that to play a game of touch football and enjoy it, would require a certain degree of long term dietary restraint and building up the muscles and lung capacity in a chronic manner.  And you must want to play football.  Too, conversely, it must be understood that ill health ( of either kind ) will lead to loss of freedoms  and limitations…Whether the limiting consequence of four point restraints or hospitalization for a cardiac infarction, is irrelevant.  Do you value your freedom?  Do you desire to live with more choices and enjoyment?  Do you want to be proud of your mental or physical strength and makeup?? Then you must work.

Does she want a healthy family and a life of freedom from the consequences of her own poor choices?  Then she must be committed to the path of health.  And she must practice it daily.

And I am talking to myself here as well.  I think I have finally learned that I feel better on meds than I do without.  And I certainly felt better in every way last year…when I was actively losing weight and shrinking in inches and growing in stamina and vigor.  This year, I have let poor health and pain become an obstacle.  But I must remind myself of the state in which I was when I began my pursuit of a healthy, thin body last year.  I couldn’t make it across a room without breathless gasping.  I was horribly fat.  Weak.  And mentally ill.  It took a huge amount of initiative born of a fervent desperation and desire to motivate me to get my body moving.  And slowly I have lost sight of that desire.  I have forgotten how great the benefit felt and was.  Time to sit and think.  Door # 1 or Door #2??  I really do have a choice.  And I have the extra bonus of knowing exactly what lies behind each door prior to making my choice.  Shouldn’t be too hard.