Goin' to the Body Shop...

...to get me a new body!!

This one is simply crapping out...two bad hips, a hopelessly messed up spine, and now a shoulder that needs to be replaced in addition to the hips. Hands twisted up far worse than my grandmas' fingers ever thought of being...and lungs that refuse to breathe just to top it off.

I'm tired.
Tired of doctors, (sorry guys...I know you've worked hard to save and piece me back together...but really, if I never saw you again...I might send you a birthday card or say "hi" in Shop Rite...but I wouldn't miss you otherwise).
And hospital rooms. And hospital trays of food.
And sitting on the sidelines when I really, really want to be in the touch football game.
I had a good summer and a good fall.
I really did.
Other than a hip which kept dislocating (I kept right on walking my morning 3 or 4 miles lugging a huge brace along), I felt healthy and strong.
Then came a hip revision.
And an asthma attack.
And now, another hip replacement.
And then a shoulder replacement.

This after a full ten years of one hospital admission after another. Countless stays in rehab...endless bottle of pills...
Long LONG nights of pain. Sleepless tossing, sheet-twisting nights.
Coughing til I throw up.

Today I posted on FB that I'm so SO ready for heaven. (The question is really: IS HEAVEN READY FOR ME?? lol.) One of my friends responded with a frown. I really don't see anything wrong with saying that or feeling it or anticipating it. When every moment is a struggle...there's REALLY nothing wrong with looking forward to the end of the race.

And still.
I have NOTHING to complain about.
Not really.
I don't live in abject poverty. My daughter had what she needed growing up...I didn't have to watch her get sick and suffer horrible diseases as a result of vitamin deficiency, as my friend's children now are...far off across the globe, where it is hard for me to help them.
I'm not locked in prison...(just in this house...lol.)
I HAVE the medical care that I need...don't have to suffer these joints completely melting into nothing...but can get them replaced as they get destroyed by the PsA.
I have a husband who has not walked out on me...after all these years of "this"....yet....
I have a beautiful, healthy daughter....

And I have a God who loves me.
You might wonder how I can say that when it seems that the furies of hell have been poured out on my body....But he went through much worse for me to bring me to that incredible moment when Eternity invades my time and snatches me into His Presence...so what right do I have to complain??

Sometimes I pray for that moment to come quickly...like this morning...after a long hellish night...
Come Quickly Lord Jesus.

A Sagacious, Lonely Mom Speaks

My daughter has recently escaped from our home and is on an adventure...spending 5 months staying with a friend down South and also then doing some traveling. Our house, predictably, is not the same without her and her leaving has not been with out stress for all involved. I think it has been hardest on my husband...she is our only child and the apple of his eye. So now he's blindly groping (without that apple in your eye, blindness can only result, right...? Although I would have THOUGHT you'd see more clearly...go figure) and trying to find his footing.
For me, I have the hardest time when I'm away somewhere and, (this is a mom-thing, I think) I'll see something...a brownie, a nice shade of nailpolish etc... and think, "Oh, I'll get this for A. and bring it home for her." Then like the floor falling out from under my feet comes the thought, "She not AT home." Or pulling into the driveway and anticipating her greeting me...again, the same lurch in my stomach.

For A., the hardness of it is now becoming harder as maybe some of the initial excitement and adventure has worn off a bit and now SHE MISSES MOMMY. (sorry , just had to capitalize that...it's a mom-thing.) Thank God for technology...when I"m a Facebook chat away...or her dad can text her and find her whereabouts at any given moment... WHAT did parents in Colonial days do when their little one went off to his life and to get even a letter to him or from him took WEEKS??? ("Thank you God for not placing me in a little house on the prairie in the 1700's!!) My husband doesn't know how good he has it. (I don' t think he'd be much for splitting logs either!)

But, (and here's my point)...last night when we talked and again this morning, my daughter (AHehmm , AHEM, may I have your attention all you moms of 12-16 year olds!) My daughter called me WISE. She even called me a SAGE! and best of all she meant it. NOT A DROP OF SARCASM there. So you see, moms, do your job and do it right (not that I'm any model there....but my daughter is forgiving...or has memory issues)...and they will come back and call you wise. HMMmmm Isn't there a verse about that???
Proverbs 31 maybe???

Schizophrenia Bites- a reblog from last Dec.

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 -pat on 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)

Facebook Panic

We've all felt it - unless I'm some kind of aberration and the rest of you are perfect people with perfect lives - the panic you feel when a friend from say.....well,....30 years ago, suddenly makes a friend request on Facebook. And in your excitement at hearing from the cute guy who sat behind you in your American History class in 11th grade, you forget momentarily that your WHOLE LIFE is spread out online for any who should look around even slightly, to see. There are moritfyingly bad photos of you; things you wrote when you were, well, NOT in the best frame of mind and which you really really weren't thinking of being viewed by your high school friends and...not-friends (to be polite) when you posted them. And now terror grips you as you feel your pride crumble and the pile of arrogance on which you'd been standing, suddenly give way into a massive landslide.

Frantic possibilities for solution come to mind; "Scour your blogs and every document with which the internet is littered and try to remove these incriminating items?" "Quit Facebook NOW before it's too late?" "Try to infect Google and Facebook with some kind of horrible virus?" (jk Google and FB, ...and internet police...) Throw your laptop from a cliff and never, ever go online again and then just PRAY you don't run into anyone whose SEEN that pic of you in your underwear and having had one too many? (And no; this is hypothetical folks, don't go looking for such a pic of me online! lol)

And what about the fact that you discover that best friends, which whom you were neck and neck for the top grades in school; are now the leading doctors in places like Harvard and Yale and you are....ummm, disabled and unemployed with nothing better to do that to embarrass myself online? (OK, granted this one is ME, but you've all doubtless felt something similar--unless you are a leading specialist at Yale or Harvard yourself and have probably done nothing shameful -publicly anyway).

In the end (for me, anyway, although yes, there are a few articles which I am strongly considering removing from my blog) in the end, we must eventually come to the place where we can relinquish the pride and say, "What's done is done" and relinquish every drop of self-flattery and pretense in us and just let it be. LET them think what they want ... The truth is you did the best you could with the events, disabilities, disasters and challenges that came your way. And it is NOT what your high school crowd thinks of me that counts anyway. It's what my Father i n Heaven thinks that matters in the long run. And--I'm fairly certain--He approves.

Thoughts from the Homebound

You know your life is boring when you begin to take photos of the way the light shines through your water bottle.

You know your life is boring when the greatest excitement of the day is choosing and then struggling to get your socks on.

You know your life is boring when a friend offers to take you with her to pick up her kids from school, and you JUMP at the chance...just to see another human face.

....when your spam gets you happy and you actually READ it!

....when you start ordering books you already own on Amazon for your Kindle, just for the fun of it.

....when you stare at the light filtering through your white curtains and are entranced by it, knowing it is the most beautiful thing you will see all day.

....when you get into the car of a friend to go to the pharmacy and out of sheer joy, you want to hang your head out of the window like your dog used to do...to let the wind make your cheeks flap and to feel the fresh air on your face.

....when you are dismayed that you have Vonage and thus never get any phone calls for advertising purposes...It would be REALLY nice to talk to someone...EVEN someone who mispronounces your name. (I always wonder if they deliberately..the name is so simple, you'd have to do it deliberately to get it wrong).

Make someone's day today. Stop in for a visit. Give a call on the phone...Offer to take them to the store...It's an easy way to be loved.

knobby hands and revealing shirts

I'm 48--chronologically. However emotionally, I think I am 19 or 20: the age I was when I became sick with schizophrenia. I truly think that I will always view myself as being that age; that I will always be more comfortable with people in their early twenties than I am with the middle-aged folk with whom I should be associating. And this could just be the reason I think nothing of wearing a sweater-dress with leggings and boots...or a young-styled shirt which leaves nothing to the imagination...Never once considering that my body would more appropriately be hidden.

That's my emotional age...MY physical age however is something more like 90. This is evidenced by hands that are contorted by arthritis and will no longer leave their gnarled, clenched, claw-like position with fingers straightened. It is evidenced by the fact that in the past ten years, I've probably spent more time IN the hospital than OUT. It is evidenced by the fact that I spend no time outside of my bedroom except to go to church or to a doctor's office.

These thoughts beg the question: how old am I spiritually? A healthy, mature age? Or five? or am I decrepit there also??

Where am I??

Can you imagine waking, opening your eyes one morning, stretching your body and feeling that something is not right? You look around. What is this place? How did I get here? That was me this morning. and the scary part was that I was in my own room in my own house. I knew that something recently had happened to me physically...my body felt pain....I searched my memory...and found it curiously empty and very very confused.

There is Something. Something with a capitol "S" looms...something to be dreaded. Something big. What is it?? WHAT??? I search the mind that seems to be not working and curiously empty this morning. I look around my room and examine each of the objects, looking for clues. for triggers to my memory which has abandoned me. I recall little tiny bits at a time. I remember that this is not the first time that I've woken blank , with nothing but the present in my experience. Where was I the last time? It was not long ago. I was in a hospital. Is THIS a hospital? Am I crazy again? NO, the room is too personal, too disorderly and too packed with belongings to be a hospital room. What hospital was I in? And is that why my body does not seem to be right? not obeying commands and hurting with every move I make?

It dawns. I had surgery. Why though? I test my body trying to focus in on the source of the pain. There seem to be several...but I knew that the searing back pain was a "standard" (at least I know that much)...It is my hip. They both hurt. But then I remember ...the left one had just been replaced.

Now I know that I'm in my room.
What is this DREADED thing coming?? Why the weight on my heart which I could feel despite the absence of memory?

I see the Valentine's Day card on the shelf at my side. I pick it up. NOt signed. Then I remember my daughter's laughing voice saying she couldn't bring herself to sign it because it was too perfect. My daughter. The pain on my heart intensified.
She is leaving. Soon.

AS I recalled this, and slowly the details of that piece fell into place... carefully put it aside to be considered later ...after I solved the rest of the mysteries around me. What happened yesterday?? Where was I ? What did I do?? Was I with anyone?? These questions remained...and did not dissipate until later I confessed my ignorance to my daughter and her astonished and worried voice said, "MOM, that was YESTERDAY. Yuu don't remember YESTERDAY??" And no, I really really didn't.

And still there were questions. I picked up an object on my desk. It looked familiar enough that I knew it was mine. But what was it?? Where did I get it?? I opened it and looked at it carefully, and the answer did not come for several lost minutes. It's my Kindle. the one I got in early December...two months ago. I'm getting frightened now. More frightened than I was at first, waking with no past and no future. Now I'm thinking things like, "How HOW will I manage to survive and care for myself with my child/woman gone? Getting dressed was beyond me. Doing ANYTHING was beyond me. I need her. I need her to care for me. To explain mysteries like my yesterdays. How can she be leaving me. NOW??

Terror grips me.
There is something wrong with me. Something bad. Something more than forgetting a word. Something more than losing my keys.

I then recall the ECT...and how I used to wake up from it feeling like this. the "where am I?? " WHO am I?? questions that would terrify me and propel me off of the stretcher in mad fear.

But that was a while ago.
Years.

I've had horrible problems with short term memory loss since then.
But I'm afraid. These mornings of total history erasures are becoming more frequent. More total.

Something is very wrong.