Archive for the ‘life’ Category

Personal Stories of Lupus

May 10, 2009

Its Mother’s Day here in the USA.  I’m a mother home very sick with a lupus complicated drug reaction.  Since this is Lupus Awareness Month, I hope to blog  something every day about lupus in order to increase awareness. If you want to help me, please share the info and links on your blogs. If you are a woman, or love someone who is, you really  need to know more about the effects of this devastating disease:

Personal Stories of Lupus

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Lupus Awareness Month – The Five Stages of Lupus

May 9, 2009

 

Sung by Avril Lavign

You’re not alone
Together we stand
I’ll be by your side
You know I’ll take your hand
When it gets cold
And it feels like the end
There’s no place to go
You know I won’t give in
no I won’t give in

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say (nothin’ you can say)
Nothing you can do (nothin’ you can do)
there’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

So far away
I wish you were here
Before it’s too late
This could all disappear
Before the doors close
And it comes to an end
With you by my side
I will fight and defend (ah ah)
I’ll fight and defend (ah ah) yeah yeah

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
Nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
[Keep Holding On lyrics on http://www.metrolyrics.com%5D

We’ll make it through

Hear me when I say
When I say I believe
Nothing’s gonna change
Nothing’s gonna destiny
Whatever’s meant to be
Will work out perfectly
Yeah, yeah, yeah, yeah….

La da da da, la da da da da
La da da da da da da da da

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Ahh, ahh
Ahh, ahh
Keep holdin’ on
Ahh, ahh
Ahh, ahh
Keep holdin’ on
There’s nothing you could say
Nothing you could say
nothin you could do
nothing you could do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Psychscribe Quote #59

May 4, 2009

“When there’s nothing left to be said, are you still saying it?” Old 60’s quote from who knows where…

Relationships: True Intimacy

May 1, 2009

True intimacy is achieved when you feel safe enough to be emotionally naked with your partner.  You know your partner will not try to talk you out of your authentic feelings, will not say you’re “over-reacting”,  will not try to fix it, and will not ignore you. You know you will be supported and validated no matter what you’re feeling and sharing, verbally or otherwise.  You know you will receive empathy.This is love, pure and simple…

Psychscribe Quote #57

March 27, 2009

©www.clipart.com 2008

 

“If you watch how nature deals with adversity, continually renewing itself, you can’t help but learn”  Bernie Siegel

A Comforting Ancient Story

March 25, 2009

My dear friend SanityFound sent me this ancient story to comfort and fortify me about my upcoming visit to my dying uncle. It did indeed comfort me, and it resonated with truth. I hope it helps some other reader here:

In ancient times it was believed that when someone gets an illness, someone who doesn’t die suddenly, it is God giving those that passed on a chance to be with those who visit the the ones soon to pass.  In ancient times those who loved the one who was ill would visit them, staying a while at their bedside with their eyes closed, just breathing and feeling. They said it comforted them feeling those gone already surrounding their loved one.

 God brings the angels who know the one soon passing so that they do not fear, and to give comfort to those visiting.

The Life Cycle

March 23, 2009

Even as I celebrate my daughter’s pregnancy and my son’s imminent marriage, I got terrible news last night. My  favorite uncle, brother to the father I’ve been grieving on this blog, has pancreatic cancer. The very same cancer that took my father’s life. Lethal and fast moving. And, even though I wasn’t present when my father died, I now know it was a very painful death. A death my uncle witnessed.   I feel sick at heart over what he has in store for him. What he knows he has in store for him. I always imagine, no matter where my illness takes me, that the doctors would give me enough painkillers that there wouldn’t be much pain. Apparently that’s not always the case.

This is the uncle who taught me to ice skate with my  beloved twin cousins, Lenny and Joe, both already dead before their time.. He took us on wild sledding rides, the three of us screeching in terrified glee.  He taught us  to dive into our pool head first, hands properly pointed above our heads. To make a game of raking autumn  leaves and watching him set fire to them…then toasting marshmallows, carefully, his hand on our wrists to be sure we were safe. He taught the twins, already raucous,  to make practical jokes at my expense. He was the one who made noise on the roof for Santa on Christmas Eve, complete with bells for sound effects. Who truly enjoyed the company of us three little rug rats. And most importantly, who took us off the hands of our stressed out parents and provided a safety haven whenever we needed it most. 

I want to run to him and see him, its been years. I will go with my aunt, his sister,when she is over the shock and ready to plan our flight. I confess I am terrified.  It already feels so like what we went through with my father. I want to be strong and supportive but I’m afraid the similarities will curl me into a useless emotional fetal position..I keep telling myself that he’s not my father. He’s my uncle. I keep telling myself that he is 75. My father was 53.  I tell myself that we all have to die of something. As he has said, he’s had a good run.

It doesn’t help.  It doesn’t help at all. My roots are dying one by one, as nature intended. Thank God a new one is sprouting in my daughter’s womb.

Baby V

March 19, 2009

(12 week sonogram found on youtube- NOT OUR BABY!)

I cannot even begin to describe what an experience it was to see the baby on the sonogram. I stood next to my son-in-law, my daughter of course on the examining table, holding her husband’s hand, as we watched in awe. That was no flat, lifeless screen as shown in the photo on my previous post. It was like an in utero video. At twelve weeks  he was moving around, very active, and even sucking his thumb! There we were, three adults, dumbstruck.  “Oh wow!” was pretty much the extent of the conversation from all three of us while the tech did her thing. My daughter’s “oh how cute!!!!!” periodically punctuated the conversation. She, as we all did, really melted when we saw the thumb sucking. That and our repeated question “is it a boy or a girl????”   The tech kept demurring that she couldn’t be certain at twelve weeks, but finally, having found the penis, she announced “Its a boy!”

We all exclaimed in joy! My daughter was no longer carrying an “it” but a male baby. From the moment I heard it, I no longer felt merely the excitement of the pregnancy. Now he had an identity.  I felt love for him . For that tiny little guy so active inside his mom. For  Baby V, already named before his mom even got pregnant.

At twelve weeks, this baby was no future unknown. This baby was now.

And I feel so very honored that they invited me to participate in this intimate, joyous stage of their journey.  I love all three of them with all my heart.

My Future Grandchild

March 17, 2009

(An Embryo at 12 weeks- not ours)

I am so excited. I’m going with my daughter and son-in-law for the 12 week sonogram tonight. What a way to meet my grandchild! I don’t remember them back in my day… Apparently this tech has a 100% success rate reading these things for gender, but of course the 20 week one will be definitive.   I have many deep thoughts about this baby’s soon to be arrival into our family, but that will be another post for another time.  Just had to share the present thrill.  Even my own Drama Mama (thanks for that one, Amber!) is excited. She will be a great grandma, and we even have a great great grandma waiting in the wings.  More tomorrow, friends.

When I am Happiest

March 16, 2009

 

I’m happiest when I’m creating. I am totally present. It feels like God flows right through me. Peace and energy simultaneously! What could be better than that??? Pure joy! I honestly feel that both physical and spiritual healing continue to take place in me, the more I allow my creativity free reign. Poetry, jewelry designs, decoupage, photography- all of it. I’m working on a new jewelry design which i will show you later. I went to take photos of what i’ve done to show you guys but my battery was dead on my new camera 😦

Anyway, just thought I’d share a happy mood for a change.  By the way, the photo is not me but my sister and dearest friend, who shares my joy as described here…she’s an incredible mixed media artist so we are starting a business together. God I love her.

Economy Crashing Home – AGAIN

March 15, 2009

Gloria Steinem once said that the personal is political. And I fully experienced what she meant. Now, in my life, the political is becoming personal. 

At least my husband’s job is intact…for now. Maybe it was a rumor that the business would fold, but the scare certainly got our attention regarding our vulnerability in this economy . Now, two other family members are definitely being hit.  These are not rumors. Both of them had their own businesses which in another economy would have made it. Now, they’ve lost everything.  Oh I know, I know, material things are not the most important things. We all  write about our values and all the wonderful abstractions that fill our souls and are what count. We talk about the value of suffering and what we learn from it. 

But it hurts like hell to watch your loved ones go through something like this. First, their grief over their lost businesses. I know. I’ve been there.  You put your all  into it and still you have to close the doors. And then the fear. Their fear and yours. What will they do next? What is there to do next in this economy? They’re qualified for jobs… just like  the millions of other equally qualified people  who are waiting on line for interviews.

I know, health comes first. Believe me I know. But right after that comes a sense of safety and security in the world as we’ve known it.  And that, for now, is gone.

First it was physical terrorism. Now our economy crumbling.  It sure feels like another type of terrorism, doesn’t it?

Psychscribe Quote # 56

March 10, 2009

For my friend VanessaLeigh, who organized a vigil acknowledging the eve of the beginning of testimony regarding Prop 8 in California:

“Moral cowardice that keeps us from speaking our minds is as dangerous to this country as irresponsible talk. The right way is not always the popular and easy way. Standing for right when it is unpopular is a true test of moral character.”  Margaret Chase Smith

Economic Crash Hits Home

February 26, 2009

Sooner or later the reality of it all had to hit. Like millions of Americans, we lost most of our retirement money in the stock market crash. We thought it had been safe in our 401K.  Even so we figured, hoped, like millions of Americans, that it would rebound. We did not panic, even though my husband is 64 years old.   We still hope so.

And our home, like mostly everyone else’s, is not worth what we paid for it four years ago. Ok, well fine, we don’t want to sell it anyway. We love our cozy little place out in the middle of nowhere, PA. We look forward to our grandkids’ visits out to the country, where we can take them fishing, have sleepouts on the screened porch, catch lightening bugs, that kind of thing.

However recently just before the crash, my husband, primary wage earner, left a very well paying, secure job, to take one closer to home, and me. And that has turned out to be a disaster. Long story short, the company restructured and let go the man who hired him.  Then the other day Alph comes home and tells me there are strong rumors, from good sources.  that the place is going to fold.  Yes, I know, a rumor is just that,  a rumor. But based upon what my husband sees of the management of the place, which he was hired to fix, the rumor seems highly credible.

With no money to draw on from our 401K  or any home equity, we are one paycheck away from no house, no security, no golden years. Luckily, he has already networked with a previous boss who is also a personal friend, and  has consulting work lined up with him for sometime next year which should turn into a full time job.

But still…  one paycheck away from public assistance.

It wasn’t supposed to be this way.  Not at our age. I grieve for the lost, false sense of economic security. Ignorance was bliss.

“Interview” with Career Criminal

February 15, 2009

 

I was just watching a news story about a police officer who was killed by a “career criminal”. 

Now there’s something for the perpetrator to be proud of.  A murder to add to his resume.

Come with me to an interview with a career criminal composite. We’re having coffee at a Mac Donald’s in a really scary part of town.

“So what do you do for a living, Bob?”

“i’m a career criminal.”

“Could you tell us a bit about your job?”

“Yeah. I  sell drugs. Steal and kill and stuff like that.”

“What kind of compensation can a good career criminal hope to make?” 

“Well, the drugs are always good for a few hundred, even a grand some nights.  Or you can always get some cash  from someone walkin’ down the street.  It depends on the victim. You have to be good at targeting your mark. If you’re lucky, you can make hundreds in just one night. If you screw up and the mark has no cash, there’s always the payoff of the thrill kill.”

“Thrill kill?”

“Yeah, you know, like, you kill the mark anyway because you’re pissed off and just want to at least get a rush from that. Cops are better though.” 

“How so?”

“Cause they think they’re so above us, and are always sticking their noses into our business. I mean everyone has to make a living, right? I need a roof over my head and food on my table just like anyone else.

“Well…it must be dangerous?”

“Some. ” (He flexes his muscles a bit, clearly proud.) “But not if you’re tough, and you’re good. A lot of so called career criminals are just criminal wannabe’s. They’re amateurs. They don’t stay on the street, or anywhere else, very long.”

“Does your mother know what you do for a living?”

“Well, she knows I’ve done time but she also knows I was wrongfully  convicted.  I mean, otherwise why would they allow us conjugal visits?”

“Conjugal vists?????”

“Yeah, man it ain’t so bad at all. In our state, we have the right to get a trailer one weekend a month for our booty call.”

“Have you ever thought of going straight, getting a…real job?”

“Hey lady, you ever see where I grew up?  Did ya think I was gonna be a banker, or a lawyer? I”m doin’ just what my daddy did..”  

“You could go back to school…”

“And make what? Ten, fifteen bucks an hour when I get out? Who could live on that?” He looks at me like I”m a complete jackass and stomps out, like a bull ready to charge.

I walk fast, trying not to run, and get into my upscale car, locking all the doors. I feel scared, confused, angry, and also strangely sad for him.  For the blankness in his eyes and the danger in his soul. 

I zoom home to my cozy little house in the burbs, and thank God our sons were born into the life we’ve been able to offer them.

Make New Friends But…

February 12, 2009

 

 

 

 

“Make new friends but keep the old. One is silver and the other is gold.”  

I’m finding I don’t agree with that old saying.  Some of my old friends have disappointed me terribly in regard to my health issues. No support at all.  Not even polite questions about how I’m doing.  If I mention I’ve been having a hard time, they respond as if I mention the weather has really been getting to me. Yet my blog friends are here for me all the time, express genuine concern, and check in with me to see if I’m OK when I’ve been quiet for a while. 

So for me, new friends are the gold ones. Thank you, each and every one of you.

We’re Pregnant!

February 9, 2009

Ok, I know its customary for the mom and dad these days to say “we’re pregnant”, but I just have to tell you that my daughter is pregnant with my first grandchild, and it sure feels like WE’RE pregnant..(.actually just like her wedding felt like “our wedding”.)  We are just so close. She wants me in the delivery room and everything. I am just so honored about that. And even more honored that her husband wants me there.

No, he really does.

 She just got back from the doctor’s. We knew it of course from the home pregnancy test and other obvious signs, but it was nice to have him confirm that she’s healthy and they got to hear the heartbeat. She’s two months, due September 25th. 

Woohoowoohoowoohoo!!!!!!  🙂 🙂 🙂 🙂 🙂

She thinks she already looks pregnant, especially in her stomach. I don’t want to rain on her parade, she’s so excited, but truthfully, shhhh…here is what she still looks like:

If I Had My Life to Live Over

February 7, 2009

 

This is a well known column by Erma Bombeck, a very popular writer who was syndicated back in the days before the internet and died in 1996.. (Yes children, there once was a world without it when people couldn’t live without their paper newspapers!) 

Anyway, I thought I’d post it for anyone in younger generations, or other countries, who missed it. Its quite wonderful, I think. Hope you will too. Its called “If I Had My Life to Live Over”.  She writes:

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained and the sofa faded.

I would have eaten the popcorn in the ‘good’ living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have sat on the lawn with my children and not worried about grass stains.

I would have cried and laughed less while watching television – and more while watching life.

I would have shared more of the responsibility carried by my husband.

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren’t there for the day.

I would never have bought anything just because it was practical, wouldn’t show soil or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I’d have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, “Later. Now go get washed up for dinner.”

There would have been more “I love yous”..  more “I’m sorrys”…  but mostly, given another shot at life, I would seize every minute…look at it and really see it…live it…and never give it back.

by Erma Bombeck 

About Erma from Wikipedia: “Erma Louise Bombeck (February 211927 – April 221996), born Erma Fiste, was an Americanhumorist who achieved great popularity for hernewspaper column that described suburban home life humorously from the mid-1960s until the late ’90s. Bombeck also published 15 books, most of which became best-sellers.

From 1965 to 1996, Erma Bombeck wrote over 4,000 newspaper columns chronicling the ordinary life of a midwestern suburban housewife with broad, and sometimes eloquent, humor. By the 1970s, her witty columns were read, twice weekly, by thirty million readers of 900 newspapers of theU.S. and Canada.”

Black History Month

February 6, 2009

For anyone who lives in a cave and doesn’t know it, this is Black History Month. I thought I would offer a nice link to historical milestones in black history:

http://www.history.com/minisites/blackhistory

There were many heroes in this long journey, but my favorite has always been Rosa Parks, who damned well refused to sit in the back of the bus!

The Measure of Grief

February 5, 2009

 

 

THE MEASURE OF GRIEF

 

Twenty-five years ago today my father died.  

Even in my dreamless sleep I knew it.

 

I stumble out of bed  

where is my husband?

 

I want to hug him    

hug him so tightly

but he is gone

gone to work  

to work his ass off.

 

Gone.

 

I worry about his heart.

 

I want to hug my father  

(who worked his ass off).

I want to hug him  

hug him so tightly

 

but he is gone  

 

gone to rest    

to rest in peace.

 

I’d rather he were here, God forgive  me.

Yes.  I would rip him right out of paradise  if I could

to have him back here with the whole family

loving    living   YES , even suffering

but right alongside us where   think he belongs.

 

A quarter of a century.

One-fourth of a whole.

A quarter coin is so small really.  

 

A hole the size of a quarter 

is still in my heart  

big enough to kill me.

 

by Psychscribe ©2009

Loss: Feeling the Pain

January 28, 2009

I wrote in my  previous post, Final Words, about needing to feel the pain of loss in order to move on….well today I am feeling a loss I can’t identify…related to the present…. I know I feel it because I feel so sad, and I can feel the sadness in my chest….heavy….solid…I notice I’ve been feeling kind of angry at my body lately, how it has failed me by turning on itself and using our autoimmune system to attack it, and me. I look in the mirror and want to yell at it….WHY DID YOU DO THIS TO ME????? The research talks all about genetic markers, but I know that psychologically we can unconsciously do bad things to our bodies. I ask myself, what am I punishing myself for? Then I think maybe its not punishment, but fear causing all this in me. Fear of things I still haven’t worked through.  I also realize that at this time 25 years ago my father was dying. He died on February 5, 1984. I always get depressed at this time of year. Maybe this is all connected…I don’t know….

When I finish this post I will go to prepare for my bible study Friday night. I know that the Lord will comfort me as I read. So I have hope.

Protected: Final Words

January 24, 2009

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Psychscribe Quote #52

January 18, 2009

 

 

images

 

“Nothing worth knowing can be taught”  Oscar Wilde


Psychscribe Quote #51

January 16, 2009

658_steasdale

“It is strange how often a heart must be broken before the years can make it wise.” Sara Teasdale

Lupus Rant

January 14, 2009

I know there are people who have it far worse than me. I appreciate that. But this morning I am feeling just so oppressed by the demands of my disease. I just spent an hour of my life, which I do weekly, filling my pill dispensers. In a few minutes, like it or not, I have to drive 45 minutes away to see my urologist, because I am one of the 30% of lupus patients who has a higher incidence of bladder infections than the regular population.  I am on high doses of prednisone again which make me hungry and fat. Meanwhile I’m trying to live a normal life, continue my professional career, and maintain my relationships with friends and family. Not to mention my sex life. I know I am not saying anything different than anyone else does when they feel the need to bitch about their chronic illness, but this morning its my turn. Lucky you I have to stop now, or I’ll be late for my doctor’s appointment!

Words on Women & Strength

January 9, 2009