Word Salads or the Demyelination of Me

The lightbar effect

2012-01-29T13:11:00.001-07:00

Riding in Alex's car draws lots of unwanted attention. I'm subjected to what I call the lightbar effect. Note his Camry below with the lightbar on top. How often do you see a Camry with a lightbar?

Lightbar on Camry

The lightbar changes the driving habits of everyone around us wherever we go. Cars suddenly drive slow (sometimes so slow...it's disturbing) and the tap-tap-tap on the brakes of the cars ahead of us do not fool us. He is not a cop. He is not the Sheriff. He is not an undercover agent, Homeland Security, CIA, FBI or the State Patrol. He's a volunteer EMT/Fireman.

Speed up, people. Even I don't drive that slow.

Or....sometimes they think I'm the prisoner riding in the front seat with no handcuffs on, holding my purse so they peek in to see what I'm doing. =p

I should videotape some reaction shots.

Especially when the Camry with the lightbar pulls into a HC Parking spot. WHOA..... out comes the placard along with me. Oh. It's for her, not him.

"How are you", the Medicaid caseworker asks...

2012-01-27T14:57:00.002-07:00

...via email.  Alex met with my caseworker who works for Medicaid this morning.  I decided to ask get him to ask her how to answer the question.  Safe government answers make life easier.

If you are wondering many caseworkers I have, the answer is two and a half. Okay three... really.  Alex isn't a caseworker but he legally has what I call pow-wah. He's my personal care attendant. He can cause a lot of trouble for me ...like try to put me in a nursing home. If he even tried, OOOooo, I'd take his remote control away from him! No more Burn Notice!

I joke that Alex is the "half" as he is responsible for my well-being and must document every single thing I do or don't do - (quit tattling on me!) and she in turns reports everything to Medicaid. Are you following all this? That's two people plus Alex.

Last time Medicaid asked me the "how are you" question, I got in trouble for my nice reply. HAHA! It wasn't that kind of email. They don't email "how are you" questions even if it's phrased that way.

Don't be fooled.

It was a "Tell me you are still sick" email but I didn't know that.

In other words, tell me you still have MS, tell me you are still suffering, tell me you are MS'ing. I simply said "Hi ****, I'm fine! Nice to hear from ya! Blah, blah, blah!"

This time I asked Alex to ask my caseworker what to say. "Tell the truth." she said.

What is the truth?  "The truth is I still have MS and it is incurable." HAHAHAHA.

No Sherry, tell her... "I'm progressing, sometimes I have trouble with the steps."

Ok fine, whatever. I love being a government puppet.

I was approved for Medicaid because I had MS and am low-income. It's progressive and incurable. (both the disease and income)   If you ask me how I'm doing 3 years later, what do you want me to say???

It makes me feel bad to say stuff like that to "MY" caseworker. I don't even want to have a caseworker. We knowwwwww about MS and what it does.

Or do we?

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I am using a different webcam for my youtube videos. It's frustrating...I can go at full speed with my signs but I can't seem to turn off autofocus. Baby steps... kinda like the email with Medicaid...

I hate Winnie the Pooh

2012-01-26T13:39:00.000-07:00

"I can't find my car keys in the morning.

Trying to get out of my house is a nightmare.

Where's my wallet?

Where are my keys?

I have to go find a missing person."

Attributed to Anthony LaPaglia,

the actor who played Jack Malone on "Without a Trace"

The simple black wallet is Nicole's. The weird wallet is my new one. I've been using Nicole's wallet since she died. The weird wallet was on sale and it looks more like "me".

Without a thought, I bought it. It was a bargain. 80% off woohoo.

Alex is driving. I'm moving stuff from Nicole's black wallet to the new one. Things are going well until I get to the bowels of Nicole's wallet.

There's Nicole's driver's license. There's her medical insurance card. Expired, of course. She was uninsured when she died. Her auto insurance information. I forgot I left it in the black wallet, on purpose. It was her wallet. I didn't want to remove it at the time so I didn't. I simply moved it to a "undisclosed location" inside her wallet. In other words, a place I wouldn't go.

But now I don't want my new wallet anymore.

Alex takes a look at me and sees I'm sobbing while he's driving. (he's used to it by now) HA. It's our routine, this sobbing/consolation thing. He doesn't have to ask what is wrong, he knows. He tells me he knows I'll put Nicole's wallet in a safe place.

I'm supposed to "move on" and I don't want to. Moving on to me means letting go of something I don't want to let go, not now, not ever. Nicole's DNA is on that black wallet. For whatever reason she loved that particular wallet. It's a poignant reminder of her realness to me.

Winnie the Pooh said:

“If ever there is tomorrow when we're not together.. there is something you must always remember. you are braver than you believe, stronger than you seem,

and smarter than you think. but the most important thing is, even if we're apart.. i'll always be with you.”

I still have my Winnie the Pooh from my childhood. Talk about keeping stuff. It's in storage. It was dearly beloved. Now I want to beat the living **** out of it. How dare Pooh speak of something he knows nothing of?

Grief emotions parallel bungee jumping - not that I've tried to bungee jump. Up, down, up, down, sometimes...SNAP! Did you see the video in which the lady's cord broke and whoops... she fell into the river with the crocodiles and survived? Some of us don't live through such traumas. I plan to, however.

Being chomped on by crocodiles (metaphorically speaking) is not the way I want to go.

A mere wallet change disrupted my equilibrium for a few days....forcing me to ask myself a few questions:

Was it worth the meltdown? This wallet purchase? (I didn't anticipate it) Did I move on? Did I learn anything? Was it "good for me"?   Frak it. I like my emotions to be like the Kansas prairie, not the Colorado mountains. Level.

Maybe the experts would say "it was a good experience, cathartic, time to move on" ("insert your choice of B.S. words of expert advice here") but I'd turn it around on them and ask... "Did YOU lose a child?" and if the answer was "No, I did not" then I'd tell them to sit down and learn from me and those who have. =p

Said politely....btw, but wait till I get my hands on Pooh. He's done for.

Back to my wallet problem.

I've been upset I bought a wallet. I'm just now getting over it. I didn't know it would set off a cascade of emotions. Crying is drying, (per the eye doc) and all those stupid bottles of lubricants to soothe eyes... it's like building a dam while there's a hurricane going on. You try eye drops next time you are having a major meltdown because your neighbor called you bad names or you stubbed your toe. Of course you have to be a crier. I wasn't - I guess I am now.

It made me very unsettled so I put Nicole's wallet back in my purse. I am not doing the "moving on" thing.  Nicole is my missing person. I know she's dead but some days I can't ... go there. Those days, it is confusing as well as comforting to see her wallet in my purse.

Every woman knows there really isn't room for two wallets in one purse.  I have my answer. I'll carry two wallets. Mine and Nicole's. We'll share one purse.

Thank you Rhapsody

2012-01-24T08:53:00.003-07:00

(go check out her delightful blog!) blessed me with an award.

The condition of accepting this award is to first:

link back to the presenter Rhapsody Phoenix
share 7 things about yourself

I am comfortable with myself and if you aren't comfortable with who I am as a person... I am old enough not to care, lol.
I love genuine Southern cooking. Not Paula Deen's stuff. Genuine Cajun is okay but it's not Southern-stylin'. Southern cooking is Southern cooking, peeps. Collard greens, turnip greens, black-eyed peas, purple hull peas... nobody in Colorado knows what I'm talking about.
I would be very stubborn with TSA if they messed with me. I don't want to be patted down by strangers and I don't want to be scanned. I'm an American, not the underwear bomber. I guess I'd be detained.
I am a Michael Pollan fan but I can't afford to be one. Read here. Michael Pollan
I miss having a garden. Sometimes it makes me almost crazy, not having a garden to putter in. Plants and flowers bring solace. (along with nasty spiders)
When people tell me "I'm strong, I'm brave, I feel like a fraud. I do not feel strong, brave or .... it seems I am faking it. Or maybe existing.
When I see parents upset with kids in public I want to tell them their child might be gone one day. Be gentle. Be loving. Be kind. Hug more. Talk less. Listen more. I sure wish I had and I thought I was "all that".

Pass on the award -

Herrad, at Access Denied her perseverance puts me to shame
Santa Mark, at Stars like Grains of Sand in my Pocket who makes my brain hurt in a good way
Thomas, at Living Next Door to Alice for teaching me enormous amounts of gentleness in a short time
Gerry, at Daughters of the Shadow Men who I consider a good email friend/blogger. We share our worries together.

This is only a start - one thing I know for sure is I have left peeps off. I am sure I will kick myself in a bit. At least that kick will get me moving....

Stop talking about them, mom!!!

2012-01-20T14:26:00.002-07:00

This morning I went to my grief support group. Since we were doing laundry next door we were a little early. I turned the lights on and prepared the room.

In a few minutes I saw a very frail looking woman peer in the door. I immediately knew she had lost a child. When a child dies, the mom gets implanted with a dimmer in her eyes. They're never quite as bright and sparkly. That's the best way I can explain it.

I can spot moms who have lost children in stores, I swear.

But this mom was very different.

"Are you Jean XYZ the grief counselor?" she asks.

"No, I'm Sherry, I'm just playing counselor right now. Come on in." She gives me a very odd look. A cross between a smile and a cry. I immediately know she is not your everyday "I lost my child" kind of mom. The light in her eyes are almost gone and I am really searching. It almost scares me, how faint the light is in her eyes. Since I'm deaf, I look at eyes. Eyes don't lie, usually.

"Where are you from???" she says? HA. I talk weird. I'm deaf. Pfffft. Do I say I'm from Texas.....? Or? I explain I'm deaf and talk funny.

She gives me a tiny smile. Finally.

"Tell me your story", I said.

"I have six children. My first son died in a motorcycle accident. My second son killed himself. My third son died from drug abuse."

AGGGGHHHHHHH......

I asked her how she was doing. She said, "My other children tell me to stop talking about my sons!!!!"

Too much grief for her children but not too much for me. I understood.

She tells me her coping technique is simple: She screams. And she makes up stories about what they would be doing had they not died....when she said that, both Alex and I ended up in tears.

Of course I had more tears but I've had a lot of practice.

Then she says: "I probably shouldn't say this to you, Sherry...but I worry I will lose my other children."

Of course she does. It happened to her three times. I told her I worried about the same thing.

And I do.

Youtubing with a dog

2012-01-19T13:19:00.002-07:00

Gini my daschie really wanted in on my youtube video. It would have been okay except I was talking about something serious. Like what to say if your deaf friend loses a child... and she was all over me like gravy on mashed potatoes.

She was being cute but I was on topic.

Re-record.

More thinking, more signing.

This time, the dog started barking because the squirrel came up to the door. I wondered if the "special effects" would bother deaf peeps...but....I don't know...

Re-record.

More signing. (did I say the same thing, I think I did)

This time, the dog snorts because she wants a treat. She snorted! The little green audio bar went up a few bars. Rats.

Re-record.... this better be it.

DONE.

What would we do without our dog? =)

Happy Birthday !!!Andrew!!! and my new project

2012-01-18T10:45:00.000-07:00

Today is my son Andrew's 30th Birthday!!!

Happy Birthday Andrew!

Taken at Andrew's birthday party on Saturday
which rocked by the way...

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Deafness is isolating in the hearing world. Especially when it comes to support groups. There are no deaf MS support groups or deaf Compassionate Friends support groups. (that I know of) Interpreters are available but in reality they tend to separate you from the group because well...you are pegged as different. (a federal crime, I know...)

Back to my new project: I started a youtube channel for deaf parents who have lost children as well as those who have lost spouses. It's new. As of yesterday in fact. I am the only one who seems to know about it... along with you bloggy peeps. Guess you can watch it succeed or fail along with me! =p

My youtube channel link on the right. Yes, it's in sign - it's hard for me to talk and sign at the same time. They are two different languages and ummm, my brain can't compute both simultaneously but one of these days I'll TALK because Gerry wants me to! =) =) =)

Suggestions on improving it would be appreciated....yes. And I did notice a huge increase in spam comments. (thank you?)

Alex says he can tell what I'm saying and he doesn't know sign language.

Hey that's great news because now I can sign to him all the time and he'll understand me from now on, right?

My first video

2012-01-17T10:49:00.001-07:00

Welcome to my first youtube video. It's in sign language and not geared for you "hearing" bloggy peeps. I'm merely letting you guys know what I'm up to and I DO have some deaf readers. (hello deaf peeps)

I didn't write everything I said but below is a general script of what I am talking about.

But hey, youtube isn't fully captioned either soooo.... welcome to my world. I am used to it.

I want to find other deafies who have lost a child/spouse or loved one. I can't be the only one in the world who lost a child.

I didn't bother to do a "re-take" because when it comes to grief videos, there are no "re-takes". What you see is what you get.

Very, very paraphrased..... (my five o'clock captioned news looks like this every night, so....)

Name’s Sherry. Didn’t get all pretty for you. Go elsewhere for that...

Lost daughter Nicole June 10, 2009

Want to talk about grief – not much out there for deaf, we can help each other?

Blah blah blah (well, it's true)

Went to Compassionate Friends with interpreter but interpreter separates deaf from group, blah blah blah

Don’t know where to begin

I tell the Kleenex story (it's on my blog)

I apologize for moving camera around, not used to youtube.

I show Nicole’s 30 BD party invitation

Nicole’s bookmark bothers me. I explain why

I had a BLINK moment that she wouldn’t make it to 40

She died 4 years later

That’s enough for now, asking to hear from other deafies who have lost …. Blah blah blah

The thin line

2012-01-16T12:38:00.002-07:00

I walk a very thin line most days, but not intentionally. Life drew that line in the sand for me. Some days it grows thicker. Those are good days. Other days it appears as faint dots. Those days, I feel faded.

I have two major disabilities and one minor one. The minor one is profound deafness. Maybe it's a bigger disability than I realize. I notice I'm getting more and more frustrated lately with my hearing.

Probably because I want to hear Andre Rieu play. I hear him but I want to cry when I hear him. And I don't.

Multiple Sclerosis, the Multiple Screams Disease. I don't talk about it much here anymore.  I don't know why... you can only say my leg hurts, my vision is blurry, my bladder is spasming, my chest is being squeezed by a python from Florida so many times before everyone is bored.

No, that's not why. It's baggage.

Four years ago I was falling all the time. Falling down the stairs. Falling off the patio. Falling on the sidewalk. Yes Sherry, we know you fell. We see the skinned knees and wrists. At that time, support was crapulous.

I don't think people realize when adults fall it is more painful than when children fall. And, we're not supposed to cry. HA.

Now I never fall and I don't use a cane. My "falling problem" went away when I got off Betaseron, the interfering with my life interferon drug.

Instead I have other MS problems which is fine with me because goodie, I qualify for Medicaid.  =p =p =p

When Nicole died, MS became my forgotten enemy but it didn't forget about me.

I don't fight MS anymore, it's gonna do what it wants to do and I'm along for the ride so let's go, but not too fast.

Whatever, MS. I'm busy grieving Nicole and seeking symptom relief only.  That's all that's really available, right? "Disease Modifying Drugs" or DMD's - we do not want to cure MS, just manage it!

Doctors go uh-huh, uh-huh, nod, nod, uh-huh, uh-huh, nod, nod and still look confused even though MS is known to be a baffling disease. "Have you tried xyz" (insert name of script you have tried about four hundred and thirty-nine times) and you just want to jump up and yell something very Mark Twain-ish.

If they look confused why offer a script? Plus Medicaid doesn't like to pay for a lot of pain relief so the first question I ask is "is it covered under Medicaid" and usually they do not know.

The default answer is no it is not covered.

I should say - I do love my Neuro. I have a slight Neuro crush on him and I ne-vah crush on Neuros. Ne-vah. They generally piss me off to the power of ten. I see him in March. Not soon enough.

Grief is disabling. Mourning is not. Mourning is what I feel for my dad, my grandmother - they died when it was time to. Mourning is missing people, grieving is incapacitating.

Grief envelopes you. Crushes. Terrifies. I remember one night laying in bed thinking I would die. Felt the weight of an elephant on my chest, could not get any air - was it the MS Hug or was it grief? I did not know. I still don't know.

I want to talk about Nicole. Again. And again. And again. Because I do often. Even if it bores the walls.

I can't keep talking about her/grief in real life, it wears people out.

Think about it: If you have MS, how many times can you say "The elephant in the room sat on my chest" or "electric shocks zapped me when I coughed?" Right.

How many times can I say I really want my daughter to return magically to life? That her death from alcoholism was a nightmare... let me wake up, oh please?

The woman in the mirror does not feel or look like me but it is me, living single with MS and the death of my daughter Nicole so blahhhhhhhh.

From Parker Lanier

MS means Multiple Screams

2012-01-13T11:50:00.003-07:00

ZAP. Scream! ZAP! Scream! ZAAAAP! Scream!

I am sort of used to being electrocuted but I don't scream when it happens. I grab myself and hang on to ME till it passes. I must look odd, hugging myself. Hell, it hurts.

The first time it happened I thought lightening had come through the window while I was sleeping and struck my hip. I was paralyzed for several seconds in shock from pain alone. I had not yet been diagnosed with MS so I had a hard time explaining that one. Most thought I was having a bad dream. "Dreams can be intense", I remember hearing. I don't know who said that. Probably everyone, in some fashion.

It was so intense I could barely walk to the bathroom when I was finally able to get out of bed. My neuro believed me.

This is something I must take up with the Neuro in March. Who else can I call, WireNut? =p =p =p

Zaps come every time I cough. I cough all the time. Why do I cough all the time? Because I have a chronic cough. Why do I have a chronic cough? Because I have MS. And why do I have zaps in my chest? Because I have MS. And what do we do about it?

Drugs, baby.

But there's that 50% renal insufficiency problem. Why do I have 50% renal insufficiency?

Drugs, baby. (Betaseron, Copaxone, too many to list hahaha)

How did I become deaf?

Drugs, baby. (antibiotics, you didn't think they were dangerous did you?)

And why do I have dry eyes? (side effects of current meds)

Drugs, baby.

Getting back to the topic of MS meaning Multiple Screams...

Treating zaps means drugs, baby.

The irony.

Tears in Heaven meets Billie Jean

2012-01-11T13:54:00.004-07:00

Found this ASL Signer on youtube. She's so expressive!

I know sign, am deaf, but I love music. (with lyrics please)

After you dry off your tears watch this one. I can't get tired of Billie Jean and I bet many of you have not seen it in sign language. =p

Nicole visited me in a dream last night and said...

2012-01-11T10:45:00.002-07:00

....I love you mommie (that's how she spelled it) then she climbed in bed with me, wearing her cute hippie-dippie clothes (that's how we spelled it) with all her toe rings. She got her nose pierced after she died - it was stunning on her. I told her I loved it and she smiled and said she had her bellybutton done too.

We laughed.

She put her arms around me and started whispering in my ear. I reminded her I was deaf and didn't understand whispers. She whispered In dreams, you aren't deaf... and I responded quite stubbornly I supposed... I must see your eyes to hear. And I reminded her that when she was living she could hear and still used closed-captions much to the dismay of her non-deaf friends.

She laughs.

We are suddenly in the kitchen where I find my Dad and Grandmother making popcorn balls. My dad's brother is looking at me with some amusement like he always did.

They say hello.

I ask with humor... "Are we celebrating the Festival of the Dead?"

Nicole says I have a way of cutting to the chase and she wants to tell me something about that now. They all laugh. Especially my dad's brother. He has soup on the stove. I think it's what we called Hal Soup. It looks like it. I see a packet of taco seasoning mix and two opened cans of corn.

She seems to float across the room. I notice her toe rings are missing. Dad, Nanno and my Uncle are gone.

Dammit, they took the popcorn balls and soup.

Nicole says Mom, I'm sorry I never told you this but you will find stuff in my diary. I've thanked you a lot for telling me the truth even when I was raging mad. You'll see.

Then she says she has a favor to ask.

I am on guard.

I am used to being on guard with alcoholics and addicts. Especially when asked favors. My red flag goes up immediately, even in this dream with Nicole.

Keep going, she says. You on the right track. I glare at her and she says I knew you would give me the mommy glare...I miss my mommy glare... we laugh. I glare again but this time with a smile.

I french-braid her hair and kiss her goodbye, she goes off wearing a tie-dyed dress made by Andrew. She found it in my makeup bag. (no it is not that big, but she was always getting into my makeup bag)

One day at a time.

From Parker Lanier

Alcoholic Outsider Artist: Parker Lanier

2012-01-10T13:03:00.001-07:00

I don't know how I found his blog. I do know when I found it, I thought it was the most honest art I've ever seen on alcoholism. I couldn't keep my eyes off the crazed eyes drawn in the pictures. And how do I say it peeps - it simply speaks to me.

Check out the other blog here.

A good place to start, go check out a diary he drew... My Drinking Life

The artist's name is Parker Lanier.

She's in the room

2012-01-09T13:27:00.000-07:00

...no matter what's happening. In some form or fashion, even though she's dead. I can't say "she is gone". That's too polished of a word. It makes it more tolerable for readers but it is not my reality. My reality is, my daughter is dead. Tomorrow will be two years and seven months.

I am very sad today. I want to know the answer to the question, where is she? I want absolutes. I want to see that she is okay. That she is safe, where she is. That she is not just a box of ashes sitting in her own jewelry box where she stored all her greeting cards and diary. I remember seeing it on her shelf in her apartment when I visited her. I moved it a couple of times at her request. I asked her once where she got it.

I can't remember her answer.

Now she is inside the box I moved around her apartment as well as one other very small turtle urn. Ashes have a way of becoming a bit scattered I should say. I have to keep track.

It doesn't matter how big or small the room, Nicole's absence is always present. I miss her. I have so much to talk to her about, I want to do it now and not later.

I need to know where my child is.

Yesterday we went for a walk. A little girl skipping besides her mother, in the very same area Nicole and I walked when she was the same age. It upset me. And it dried out my eyes of course. A losing battle I am having with my eyes I guess. I squirt, blink, wet up a bit (a tear or two) squirt some more, blink, wet up again...frak.

Not a good start for a Monday.

Andrew's birthday invitation

2012-01-07T12:07:00.001-07:00

Something I've been working on... Andrew's 30th birthday invitation. Doing it "Passport" style. Printed something on each page, with the final page telling everyone where to go and where to show up.

Page one of the passport asks the question: (right next to his picture)

Sex: _____

I texted Andrew: What do you want me to say?

Andrew texted: How about 'I wish.'

.....and that's it says! HAHA!

Do you ever want to run away?

2012-01-06T11:58:00.000-07:00

Any normal, sane person would want to run away from a crazy life.

Since I haven't left, I must not be sane. =p

My desire to run away from home began long time ago, about the time I realized Nicole was in serious trouble.

I don't even know where home is so where do I leave from? Do you have to know where you're "running away" from to run away from it? Is it where my stuff is stored? Is it where our temporary stuff is located, where we sleep, eat and bathe? It is where the heart resides? Today is Friday and there are no Fridays with Morrie books. Or is it the Jeep I'd use to escape in? Do I talk Alex into coming with me? If he says no, do I take the dog?

We know we're moving in April. Again. I have lost count of the number of moves but I know I need an extra set of hands to count them. Or an abacus. (how high does it count?)

I miss my stuff and yes I tell myself to shut up, at least I have stuff. And who cares about stuff? My stuff is just stuff like photo albums, artwork Nicole and Andrew drew, Nicole's smoochie lips and Andrew's little baby sweater.

I want them back and since I can't have them back right now, I will run away. =p

Alex and I are not having un-marital problems. We are more than fine, I don't want to demoted him to husband status. Something about marriage ruins perfectly good boyfriends. Once the ring gets on your finger they turn into husbands. The only reason I bring this up is because I want to run away, but not run away from him. I want to run away and ... go absolutely crazy.

I have never gone crazy. I follow all the directions which oddly enough gets me in a lot of trouble, considering the number of rules, directions and regulations we have nowadays ....

I don't know how to go crazy. I'm too damn practical. I feel I deserve to run away and I don't think anyone deserves to run away which is why I've never done it but that doesn't mean I don't think I deserve to... are you following me?

I wanted to run away many times and even verbalized it repeatedly but NO ONE ASKED ME WHY.

Could it be I was the normal one and everyone else was nuts?

To this day I wish I had done so. Imagine the impact.

I would have left a short note saying:

1.) Nicole, my sweet girl...you are drinking to death. I'm not coming home or talking to you until you do something about it. You moved in to "help me" with my MS and you're hurting me. I love you very, very much.
2.) It doesn't matter what I would say to my EX.

Crying is drying

2012-01-03T10:10:00.004-07:00

I have dry eyes. Dry eyes?

Dry eyes cause photophobia, blurriness, vision difficulties, and did you know that there are different types of tears? Crying and tears formed from say a foreign object in your eye are chemically different from emotional tears.

Crying is drying.

As I have said before I do not spend my time crying. I am not a crier by nature but I suppose my eyes are getting quite the workout. (yes I know that statement contradicts itself)

Maybe I should define crying: when I think of crying I think of someone sobbing their heart out noticeably, carrying kleenex (there's THAT word again) and drawing attention to her/himself. Sobbing. Wailing. Boo-hooing. I don't think crying is a dirty word, I think of it as an obvious activity.

No, I don't cry. =p

But apparently tears have been welling up in my eyes (and escaping lol) to the point of causing dry eyes - and it is affecting my vision.

I guess that's called crying. I thought I was doing my own thing, like watching the daschie watch me watch her through watery lenses. She always looks away first, just so you know. (heh)

I see what I am doing, I am in denial. I hate to say I am crying but I guess I am.

Treatment is simple for now: artificial tears several times a day, drink more water (hey I drink a swimming pool's worth daily) no blowing fans, (we have none) blink more often and if things aren't better in 2-3 weeks then back I go. There are prescription tears, punctual plugs, (has nothing to do with clocks) and prescription pills to try. (eek)

Oh! The funniest tip... - "use a warm potato or hard boiled egg that's been microwaved one minute (place in a clean sock) and place on closed eyelids for five minutes" and with MS....I'd be BLIND in five minutes with all the heat given to my optic nerves!

Deaf, blind, dry eyes...now that's worth crying over. =) =) =)

Christine or MS?

2012-01-02T17:12:00.003-07:00

Some of you think I cry all day due to grief. I don't. Sometimes I have MS. =)

The first thing I think of when I wake up is "Nicole really died" and.... I always cuss 'WTF' in my head (yes I do - you'd think by now I would have something more insightful, more thoughtful, more...solemn, more prayerful, more... profound but no, I cuss 'WTF' and go pee. Then I brush my teeth and stare at myself in the mirror and think I'm a Stephen King character from Christine and always, I wonder how the hell I got here. Always. Always. My language has not improved over time I'm sorry to say.

Christine, the Stephen King novel really scared me. And Christine, the third wife on Sister Wives is now...slightly unhinged I think. I used to like her but now her timing belt is coming off. Ooops. My dirty little secret is out. I watch Sister Wives. And Gold Rush. Those are the only two TV shows I really watch and well.... I better not say another word about Christine.

My daschie knows the routine now. If she is ahead of me she makes a left to the bathroom as she knows that's where I am going first. I have my routine to do first - then we'll do hers. Sometimes we share a few tears first. Just sometimes. She sits and waits expectedly. She is patient. She used to be a hyper-daschie who wanted to play all the time and now she's mellow Gini. After she lost her best friend Quill the golden she was never the same. We both lost someone we loved. Everyone says she has changed and she has.

The snow that's outside the door is here to stay until Spring, Alex says. I remind myself every day that Spring always follows Winter, no matter how long the Winter. A quote from a friend I carry around in my head and heart daily.

There are different kinds of Springs. Economic springs, environmental springs, emotional springs and so on.

Tomorrow I have an eye appointment at 6:40 AM. That is not a typo. I had no idea MD's saw patients at that hour for eyes. The appointment was made after Christmas but we were trying to get the appointment made before Christmas. In case you don't know there is no such thing as an eye emergency unless you go to ER. All the eye doctors had closed their offices early - so we were stuck.

My eye problems are decidedly odd. I have had ON and Uveitis both but it really doesn't fit either. Eyes are friends (or so the dr in Texas said) but mine are arguing with each other. My right one seems to be blurry in certain areas. I am not certain though. I also have photophobia that comes and goes. My eyes do get red and they hurt but not exceedingly so. It is more of a problem in the eye affected by ON.

ON had more of an impact on my life than Uveitis but Uveitis is more of a threat to sight. Truth be told it doesn't feel like either. I will have my answer in the morning.

Maybe I've cried out all the pigment in my eyes. Well, that's not possible - it's MS stuff I'm sure - you do remember I have MS, right? =) =) =) =)

Sooooooo tomorrow before the sun comes up we'll be at the eye doctor at 6:40 AM! Thank goodness for Starbucks Lattes and... eyes away!

The box of tissue

2012-01-02T14:01:00.001-07:00

The box of kleenex gets in the way of grieving without meaning to.

You're crying your heart out. You're saying "blah, blah, blah AND furthermore, blah, blah...." and suddenly someone hands you a box of kleenex. Your crying session has been interrupted.

Do you go on? Do you shut up? Do you ask them if they need coffee with cream? Was the subject changed?

You know, we can see the box of kleenex on the coffee table. Yes we know our noses are full of snot and other critters. Yes we know we should (and could) reach for the kleenex but we haven't because we are saying "blah, blah, blah, and blah......" and need to say it.

We are not ready to blow our noses, thank you very much. =)

Leave the kleenex where it is. Don't even offer kleenex. You are stopping our flow of tears....metaphorically and physically. The message you are sending is, you are making a big honking mess and here's a box disposable rags. Clean yourself up! Is that what you intended to do?

If I (we) need kleenex I (we) will ask for it. Otherwise don't interrupt me by showing me or handing me (or the grieving person) a case of kleenex because we might not be all cried out yet.

Maybe we want to wear our tears a little longer since more are on the way... I don't know but I do know I am not alone in my feelings. =p

We grieving peeps sometimes say strange things like this to each other you know... =)

Grief Franchises

2011-12-31T10:31:00.001-07:00

I didn't know they existed. According to the book I am reading they do so I went to take a look. I am not against them - they serve a purpose. People fill holes that need filling. Franchised or not.

One of the big guru's is in Ft. Collins, CO. Center for Loss and Life Transition

He advocates companioning people who are grieving rather than treating them. Too bad people have to go to seminars to learn something so simple.

I'm only on page 18. =)

Happy New Year!

And thank all of you for being my bloggy friends. It's been a rollercoaster ride and I'm sure sometimes you think sheeeeesh girl just hush up would you...but then you wouldn't be here reading my blog would you? =)

Haley Wilson is missing

2011-12-31T06:58:00.001-07:00

Haley Faith Wilson, call the Amarillo Texas Police Department.
Car License Texas License Plate # CZ4 P044

Bloggers help other bloggers. The father asked that this be passed on. He is looking for his 17 year old daughter. We are many people, she is one person. She can be found. I believe that.

Thanks for reading this and consider posting this on your FB or blog.

T/M Conversation with Son Part II: Atlas Shrugged

2011-12-28T12:45:00.003-07:00

Andrew: Good morning mom!!! Lava you!!! $15 for Atlas Shrugged isn't bad but I'd rather find a used copy for $7 and not support Atlas in WalMart's quest for world domination lol

Mom: But people like ***** need work at WalMart!!!!

Andrew: Doesn't mean I have to shop there. Oh yeah, world destroying the world in name of jobs, I guess its okay then.

Mom: LOL!!! Well we want to feed the people of WalMart*, wait... I have been to that website.

Andrew: I lava you. I'm kicking ass today, gotta stay on it!!! :) :) :)

Disclaimer: Call me sensitive if you want...there really is such a website*. Something about the website bothers me. Stupid, I knowwwwww...

A t/m conversation with my son

2011-12-28T08:54:00.003-07:00

Andrew: I had a great Christmas with you! Fun times! Love you!

Me: Yes, fun times! We need to watch Fountainhead.

Andrew: What is fountain head lol???

Me: A movie Ann Rand wrote. I haven't seen it either. Do you know what happens if Atlas shrugs? Earth rolls off...with just a shrug.

Andrew: Poor atlas, carrying the world on his back. To much for one figure lol.

Me: Well what does shrug mean?

Andrew: I want to own Atlas Shrugged! I just looked for used copy, none to be found.

Me: Do you want the book or the movie?

Andrew: Movie!!!! LOL!

Andrew: I just got passed by a car with a Who is John Galt license plate holder! LOL!!!

Me: OMG!!! You are driving and texting!!!

Andrew: Not driving!!! LOL!!!

Me: Okay

Thanksgiving Day 2011

2011-12-27T12:35:00.005-07:00

I was looking at my old cell phone pictures - and lookie here.

It was taken on North Academy in Colorado Springs on the way back from Salvation Army. Look close - you can see the dog wearing eye goggles in the middle.

Happy couple, happy dog, happy car, happy thanksgiving, a happy day.

Atlas Shrugged at Rudolph on Christmas morning

2011-12-26T11:01:00.000-07:00

Yes it is a very bad picture (the proof is in the hooves) but no one expected Rudolph to show up on the patio while opening Christmas presents. My cell phone camera lens was dirty (whoops) and I snapped this through the sliding glass door with the screen in the way too. And quickly.  Only seconds after this shot he was gone.

Yes, we still have this much snow left.

Christmas was very different this year. We sure had lots of food for three people. Cooking a big meal in our tiny oven required some creative doing on Alex's part.  Some of you are lucky enough to have double ovens but we Alex got stuck trying to cook a standard size turkey in a non-standard oven.

There was turkey, dressing (both Andrew and I said "that's all we have?" to the 9 x 13 dressing pan) and the biggest bowl of pea salad I've ever seen in my life (made by Andrew) plus homemade cranberry relish (again- made by Andrew) green bean casserole (made by me) mashed potatoes, yeast rolls and two pies covering the counter. Ohhhh, and appetizers of course. Crackers, various homemade dips and that was before Christmas dinner.

I made breakfast by the way. Yes, me. I made Nicole's sausage balls and biscuits. Andrew said "they tasted different". That's because Nicole didn't make them, ha...his mother did.

I said "Well, I followed the directions"....and did you know following directions changes flavor drastically? My sausage balls came out of the oven with no grease in the pans. Nary a drop. Nicole's came out with tons of grease in the pans. Same recipe, but different mixing technique. Hers were better, he thinks.

Next time I won't follow the directions, lol.

It took awhile to cook, eat, cook some more, eat again and cook more. Then it was movie time. We had a decidedly interesting choice. We watched Atlas Shrugged not once, but twice. Alex and I had already watched it on Christmas Eve so he and I have watched it three times in two days.

I seldom see a movie twice and certainly never thrice. A first for me so that means I really like it. Once is usually more than enough.

I think we have a "Christmas movie" of our own as strange a choice it as sounds. It fits us. Part Two will be out in 2012.  Maybe in time for Christmas, 2012. I suppose there are stranger traditions to create out of thin air.

In conclusion.... "Who is John Galt?"  =)

Merry Christmas to my kiddos

2011-12-24T09:06:00.002-07:00

Christmas, 1983

Cabbage Patches were the rage but like most kids they found the boxes more fun than the dolls.

Miss you Nicole and miss your silliness with your brother. Merry Christmas to my kiddos.

'Tis the Season to Offend

2011-12-23T16:23:00.000-07:00

Merry Christmas!

scowl

Happy Holidays!

scowl

By golly, I don't even know how to spread Good Cheer without offending someone. Is that happening to you???

I won't say anything unless you say something first or you can pick your choice of greeting from one of the above or let me know I've offended you lol. =) =) =)

Many smiles from me to you.

Snow

2011-12-22T08:08:00.001-07:00

This is our patio. The stairs to the driveway are hidden on the left side under the snow. We received a foot last night and are expecting up to 10" today! The snow from the last snowstorm had not yet melted away and that was a week or so ago.

On Christmas Day we'll have to make a town of snowmen (complete with pets) so Gini the daschie will have some real estate can care of her "business". =)

My son

2011-12-19T11:09:00.000-07:00

My son is truly wonderful. The trauma of losing his sister has changed him. I don't think he likes to talk about her too much, it brings much pain.

We have all changed quite a bit but he is the one who is the most changed.

He is much older than his age, strange to see combined with his youthful exuberance.

He and I are really hoping to go somewhere together this summer. As in vacation...

Have Jeep, will travel. (tent and sleeping bags, woohoo!) Or maybe a train. I simply do not know. It all boils down to money, finding Alex a job and all that good happy stuff.

Joan Didion: Was her daughter an alcoholic???

2011-12-16T10:44:00.000-07:00

I feel gypped.

I am struggling to get through her book The Year of Magical Thinking in which she writes about the sudden death of her husband - while her daughter Quintana Roo is in ICU. I thought since she went through multiple deaths well, maybe some kindred spirit type of understanding would explode out of my Kindle. Whoops.

Little details are coming out in Magical Thinking. Her husband was about to down his second scotch when he suddenly died. Hmmm... was he a heavy drinker?

The question is asked, and not by me.

Read more about her daughter at The Fix, a very good website on addiction, recovery and sober living or read a bit below. Quintana Roo

Quintana went for treatment at Hazelden for alcoholism at the age of 29 -30 but Joan Didion is looking elsewhere for answers. “The stigma of addiction is worse than the stigma of mental illness. People with addiction quite often won’t admit they’re addicted,” says Marvin D. Seppala, M.D., chief medical officer of Hazelden in Center City, Minn.

The stigma of addiction is worse

than the stigma of mental illness.

Joan makes mention of her daughter's alcoholism once in The Belfast Telegraph.

Just once.

I really do not understand why people are embarrassed to say "I'm an addict, I'm an alcoholic, I have MS, I'm deaf, I have RA, I am bi-polar, I have cancer, I'm unemployed, I'm hungry and unemployed, I'm hungry, unemployed, homeless...." whatever your truth may be whenever it is necessary to tell the truth. Telling the truth is easy, remembering lies is hard.

The addicted Emperor(s) and their enablers metaphorically lose their shirt, pants, underwear and merrily go about while most of us quietly avert our eyes as not to see their lies.

I'm not happy with Joan Didion. She didn't tell herself the truth and she's Quintana's mother and an effin' journalist.

*bangs head on table*

How long does one go to a support group?

2011-12-13T13:39:00.000-07:00

Let's say your child/spouse is an alcoholic or drug addict (I know some of you peeps have 'em in your lives or are one, I read your blogs) and they're active (or you are) in AA or NA. And they have been going to meetings for years. YEARS.

Would you ask them to "quit going" because it's been long enough? Now they're "cured" please do something else with your time, like mow the grass or do the dishes? Is that your decision to make? Is it theirs? Is ten years long enough? Twenty? Five? Two? One? What if they/you stop going after 6 months? Would you feel that was "long enough"? Should they/you ever stop attending?

What about Al-Anon? When should you stop going? When is it "safe" to stop going? When does the addict become "cured"? The answer is never of course. They are always in recovery. For some reason most people know better not to ask the addict to give up going to "group" unless they want them to "remain" addicts (and some do via enabling) which is way outside my scope of understanding.

*note* You are always an uncurable alcoholic/addict but an enabler doesn't always know that.

Not for my blog to tackle as I bang my head on that table too damn hard.

And if you have a chronic disease like MS, RA, Lupus, Diabetics, or are Bi-polar, yadda-yadda (there are two pages of support groups in the local paper) most people would not wonder why you are going. Or, ask you why you've been a member of an MS Support Group since 1998.

Unless you're cured, you're stuck and there is no cure.

I don't belong to any kind of MS Support Group.

I have bladder, bowel, electrocution problems in my chest, renal issues, major spasms, vision problems, blah, blah, but who cares really. It's a walk in the park or should I say powerchair? Right now I am walking fine, tomorrow is another day. It may never come, it might be here this afternoon. That is MS.

MS impacts me on a daily, if not hourly basis but you weigh your traumas on the trauma scale. Pick and choose. You can't deal with all of them at once.

If you lose your child/spouse to death you're supposed to be over the loss in a year or so according to some. It doesn't work that way even though I, along with other parents genuinely wished it did - it would make life so much easier don't ya think???

Maybe we should have a support group limit, you can only go to AA for one year.

Or MS group for one year. See...it doesn't make sense. Of course not.

We could wake up and say "the nightmare is over" and it would be a very, very good day for us.

No more pain.
No more tears.
No more vaseline on the cheeks because tears are salty and burn your skin.
No more big ugly Jackie O sunglasses.
No more feeling like every day your child is being forgotten by the world at large.

And here we are mother and daughter - long, long ago in another world on another planet I've forgotten I lived on but not really that long ago I guess.

The cutie on the right with the purple sweater is gone (I was supposed to die first) and how am I on earth am I supposed to be okay?

Only 2 years and 6 months later?

Support group or no support group it isn't possible. Look at her. She is gone. I will never have her arm around me like that again.

Never.

*******************

I shall be spending the rest of the week catching up on blogs as I am very behind and I don't like being behind because sometimes one goes back to a blog only to find uh-oh, your blogger friend suddenly moved to Italy on a flying unicorn, is eating BBQ guinea pigs, occupying Wall Street in Argentina and has declared war on the USA and Canada. Reading blogs backwards to understand is a WTH kind of headache.

Well..you know what I mean.

MS Support vs Grief Support

2011-12-12T16:32:00.000-07:00

I was diagnosed with MS in 2006. Not one person said I had to "accept my MS diagnosis within a certain time frame" even though I whined about it for 2 years along with my thyroid issues brought on by Betaseron. Not one person suggested I was perhaps not moving along in "accepting my MS diagnosis".

Not one person. Not a single person.

I am stressing that fact.

If you're struggling with complex symptoms 2-3 years later, it's "normal because you have MS". Or whatever disease of the month you have. =p

WTH.

I had more support from friends and family for having Optic Neuritis than I did for my daughter's death. Yes, it went on for 6 months but my vision came back. And it affected only one eye and I had not been diagnosed with MS yet.

That is very strange, this sense of skewed priorities. When I lost the vision in my eye the emotional support was there. When I lost my daughter, the emotional support went *poof* like a bad firecracker.

I have to go banging on doors to find emotional support. Alex is always there to lend a hug and boxes of tissues but does he have to do all the hard work?

"Hello, is anybody home? My daughter died 2 years and 6 months ago and she's not coming back."

When did MS Support become more important than Grief Support especially since I'm really in need of grief support, whatever the hell that means. (no I'm not talking about you bloggy peeps, you guys are great!)

Yes I'm whining. Sorry.

Next post: The Candlelight Memorial Service

P.S. I'm sorry I'm being a bad bloggy friend and not reading everyone's blog but fumes on fumes are not a good combination, ya think?

Worldwide Candle Lighting

2011-12-10T00:00:00.000-07:00

Remembering Nicole

11.7.72 to 6.10.09

and all children who have died

I have to put a title here?

2011-12-09T08:29:00.001-07:00

I am trying to get to 2012 and get 2011 behind me. The holiday season this year is very difficult.  I am feeling Nicole's absence very keenly this year. This will be our third Christmas without her, I want to scream at all the happy Christmas shoppers I see at the store. They don't care of course. Their families are apparently intact. They probably think the same about me. We are all invisible to one another but I'm watching them all the time. They're not watching me.

I spy the deaf couple signing so I turn away. Impolite to eavesdrop, but it's polite to secretly lipread other people. The deaf's unspoken code of ethics. (and no I refuse to capitalize deaf unless it's the first word in a sentence - a controversy in the deaf community)

As Alex and I grocery shop at Sam's Club I wander over to the gifts section. This time I observe the families I apparently envy. Most appear stressed but not unhappy. Others appear genuinely thrilled to be putting a gift basket made in China on sale for 60% off in their cart. (go to Old Colorado City I want to whisper/hiss into their ears) I buy from small business owners even if I can't afford them.  Fewer gifts, better quality. My parents used to own a small business another century ago.

Still, other families are studying their lists and checking it twice, thrice and walking off. No one is hiding tears like me behind the pink Christmas tree.

I'm the oddity.

What are the stats? Why did I have to lose my daughter to this stupid, stupid addiction? Why couldn't I be one of those mothers who got to see her daughter enjoy her massage career, get married, have children, have a traumatic divorce and re-marry as the trend seems to be?

I am not feeling good right now. Not with myself, or my grief. I am tired of carrying the weight of my daughter around (wait - someone else has her blue eyes and can see... so a tiny, tiny little bit less of weight but not enough to notice I'm sorry) but what am I do to with the heaviness, check it in at the baggage station?

I would like to do that but I can't. Nor can I loan it to someone else to carry for little bit but I'd get it back pretty quick since it's so heavy.

I feel like crap too. Muscle spasms, leg spasms, neck spasms, finger spasms, toe spasms, and yes the colon thing. Oh - my new bridge sucks. I went back to the dentist because when I drink cold stuff it hurts but...

He can't find a reason for that except "maybe the tooth next to it is going..." however I think the bridge doesn't fit right. I can tell by looking. You can have a bridge that fits great, sorta-great or poorly. Thankfully hot stuff doesn't bother it.

I am tired of having dental and jaw problems but at least I have a bridge, rightttt????   Be grateful and shut up.

I hate going out and running into families. I don't like families anymore, how silly is that. If I can't have one, why should they have one? Yes, I'm jealous of them, petty, envious, add more adjectives, it won't hurt my feelings because I will agree with you.

I am not grieving with grace like they show in the movies. It only seems to take 90 minutes in a movie to resolve all issues unless you are a brilliant director who is famous for leaving viewers unsettled at the end of the movie. Come to think of it, if we each have a "director", fire mine. I don't like him or her.

Grief makes you feel selfish. One moment you are okay and the next you find you have created the Dead Sea in your own apartment with all your tears and all Alex did was go to the closet to get his coat because he was taking you to breakfast. So Alex takes his coat off and waits it out with hugs before we try again. Sometimes we try again a week later, sometimes we try again an hour later.

I don't know. It's hard for me to read other people's blogs right now. It's hard for me to write my blog because I feel like it's a mortuary blog.

There is an upside to having stress

2011-12-06T07:56:00.001-07:00

Compassionate Friends Worldwide Candlelight Service

2011-12-04T15:30:00.001-07:00

Compassionate Friends 15th Worldwide Candle Lighting

Sunday, December 11, 2011

7:00 p.m.

Click here. If you've lost a child, next Sunday is Compassionate Friends 15th Worldwide Candle Lighting but I'm sure I don't have to remind you. It's not like we can forget that date. We reluctantly adopted the tradition. Last year we went, this year we'll go again. Next year of course our seat is already reserved.

If you haven't lost a child, think about lighting a candle on that day for those who have lost a child.

Even a birthday candle will do, it's the thought that counts.

The missing piece

2011-12-01T16:10:00.001-07:00

Nicole dies and breaks our family circle. Andrew and I will always be looking for our missing piece. I guess one day we'll learn to grow some kind of scar tissue over the big missing hole but look at how big the hole is.

Nicole and Andrew grew up on Shel Silverstein. My dad was in the Army with this guy. (name-dropper!)

I remember reading this page to Nicole because this page had a song on it and I can't sing.

Nicole would laugh herself silly at the way I "sang", or screeched.

When she was in grade school (it didn't work with Andrew, he thought it would be hilarious) I'd say "Nicole if you don't clean your room I'm going to sing Achy Breaky Heart to your friends when they come over..." and boy she'd get her room cleaned!

She did NOT want me to sing to her friends, e-vah.

And I never did, thank goodness. =p

But Hi-dee-ho, here I go,

Lookin' for my missin' piece.

The wah-wah post

2011-12-01T15:07:00.001-07:00

Not a self-portrait

If you're honest with yourself, an alcohol or drug addiction problem is probably in your life whether you admit it or not. Whether friends or family, it seems easier to admit when there's a problem. Everyone knows I'm deaf. I think it would be kind of silly if everyone went around pretending I wasn't deaf. "No, she's not deaf - she's ignoring you, so ignore her back."

Or, "She does not have MS, she's lazy." Sometimes people forget MS is about nerves and not muscles. Exercise does not make you stronger, it makes you weaker if you have heat intolerance. *waving hands*

I remember a conversation I had with Nicole - she asked me once how I knew when she was lying. I said "Nicole, there is a saying I heard about addicts; you know they are lying when their lips are moving." She was sort of amused but not really; she was in a good mood that day but I found it to be very, very true. I told her it was easier for me to deal with the truth than with lies but addicts do not care about that. At some point it is easier to let them think you are buying their truths, knowing they'll fall on their own swords eventually.

I didn't know her fall would be fatal.

This past Sunday I proceeded to have a major meltdown that took a few days to recover from. Actually - I'm still in my own grief recovery, I've decided if addicts can have a recovery then I can have one.

So there.

I will warn you in advance none of it makes sense unless you are living my life. I sobbed out the following to Alex:

I don't recognize my life *wah, wah*.
I don't recognize my face in the mirror anymore *sob, sob* I don't put makeup on everyday because when I do I cry it off. Raccoon eyes burn because mascara stings and so do tears. And what's the freakin' point??? Well, I want makeup on but I want it to stay on.
I don't know what to eat because there's no edible food substances like turnip greens, purple hull peas, baked squash, sweet potatoes, hominy, scraped corn off the cob cooked in bacon, meat loaf, southern roast chicken, catfish cooked with cornmeal and hush puppies (can you tell I'm from the south) *wah, wah*
All my clothes are in storage, I thought storage was three months, now we're at a year *wah, wah* And I want my stuff out of storage *wahhhhhhhh....*
I don't know how to go on without Nicole, she made everything silly, *wah, wah* *WAAAHHHHHHHHHHHHHHHH*
The apartment is two rooms, I have cabin fever oh pooey I'm sick anyway *wah, wah, wah, wah....wah, wah -wah*.
I need a place to go or is that a home or vacation, *wah, wah*.
I want my old life back, I miss Nicole, I miss Quill my Golden *wah, wah*.
My son is depressed too *wah, wah*.
I am tired of tiptoeing around, *wah, wah*.
And last of all, the only thing in the apartment that feels like me are the two plants and they are not doing well, *wah, wah*....
I'm tired of grieving, tired of the heavy weight of grief. *WAH!!! WAH!!!*

When I was done I was exhausted but no, I did not feel better afterwards.

I love these

2011-11-26T14:52:00.001-07:00

Found in my grandmother's scrapbook:

A thank you note to her for

"mopping the floors"

(I miss you too Coco)

Going blind on green beans

2011-11-26T11:54:00.001-07:00

Red, green, yellow and blue are the primary colors. I'll stick with that model and not CMYK and RGB.

One of my blogger friends asked me to talk about the time I lost my vision. First, let me talk about green beans. It sort of fits in with my story as you shall see later.

As I've said before I'm having trouble with my appetite. I kinda know what the problem is.

It took some green beans kinda figure it out.

Wednesday we went to Sam's Club to buy some pies and coffee for Salvation Army. As we were walking by the produce, I saw fresh green beans. "Alex, Alex, look! Fresh green beans!" He laughed and kept on walking. Laughed!

Yeah... at almost $6.00 a pound that's what you have to do. Laugh. I like fresh produce but on our budget it is not possible. No Whole Foods here. No organic anything. Alex does not mind. He can eat anything, unlike picky me.

The frozen ones from Sam's Club come in huge bags with lots of holes (peek-a-boo, I see you Mr. Bean!) with the taste of freezer burn as your condiment. Okay...I'm not appreciative of our amazing ability to flash-freeze mass quantities of food.

I taste things very keenly now. I didn't before and why that is, I do not know. It is irritating. I used to GRRRRRR at the picky eaters, now look at me.

I am a picky eater now, I am giving you permission to GRRRR at me. Turnabout is fair play.

I think when they put me on IV steroids for Optic Neuritis they overcompensated. (a joke... it doesn't work that way, I don't think)

This is a test:

Can you read the number 49 in the square above?

I can't.
The number 49 is green.

So, let me tell you about the day red became beige in one split second.

It's almost closing time at the store- I think it was 1997 or so. Mom was downstairs helping a customer and I had completed a sale with a customer. We were chit-chatting about this n' that when suddenly my right eye went *poof* in one split second.

*Poof* means:

Contrast vanished (I can't explain that one)
Red was beige
Yellow was beige
I had very tight mesh window screen in my right eye coated with vaseline. Well, I did!

I finished up the conversation with the customer rather abruptly and went downstairs to Mom. "Mom, something's wrong with my eye " I say. "I don't see anything in your eye" and she went right back to working. LOL.

To be honest, I did not know what to say. I had been having trouble with migraines - could this be a migraine, I wondered. Pfft... I didn't want to have a migraine without red, yellow and green. Pfffftt....

Mom said to go home since it was almost closing time. I did not make a big deal out of this because none of this made any sense. Those kind of things do not happen in my world and how do you tell your mother red is now beige?

The next morning I woke up and knew something was really, really wrong. The vision in my right eye was much, much worse. I called in "sick" (always a big honking deal in a family business, everyone's feathers get ruffled - including MINE) and got an emergency appointment with our family optometrist. Yes, I drove myself. I know.....talk about denial. No one had told me I wasn't to drive.

Oh, and he let me drive home. It would be awhile before I got to do that again. Like months. The thing about Optic Neuritis is your vision keeps degrading then it levels off before it starts to "improve" to wherever it's going to recover to. Most people get most of their vision back within several months. A long time for a deaf person who uses both eyes to lipread, read and surf the internet. Oh, and read captions on tv!

After the exam which was unlike any I have ever had - he asked me if I had trouble with my hands. I said no but I am having trouble with my feet and legs. All kinds of stories there - including a time in which a Dr put me in air casts for 'sprained ankles' (they look like water wings for your legs, soooo stupid in humid San Antonio especially when your legs are not, not sprained...) but anyway I'm getting off-topic here....or maybe not, it's all about MS right?

"Have you ever heard of Optic Neuritis" he says... all I hear is "Neuritis" and I think OMG my family is going to think I am neurotic because I've been sick on and off and on and off and on and on off again and here we go...and he said Neuritis!!!

I am pissed.

He takes my hands and says "You need to see a neurologist" and the elevator drops a few floors. Oh why, I ask?

A neurologist means no psychiatrist. Wait - maybe I'd rather have a psychiatrist.... imaginary blindness in one eye is easier to fix, right?

He does not want to say but I tell him the internet is at home so he might as well warn me now. He says "Optic Neuritis is often the first sign of Multiple Sclerosis but not all people get MS" and that is when I knew for sure I had MS. I had my answer on the spot. I wasn't really upset. I didn't get my actual diagnosis confirmed until 2006 but I knew.

Fast-forward a week - The best neuro-opthamologist is located in the hospital Nicole died in but nobody knew that bomb was coming.

He tells me I have Optic Neuritis and sets up IV Steroids for 5 days which is a story that would, could, should, take up a whole post of its own but *shudders* it makes my hair fall out thinking about it.
Back to the green beans, whenever I pass the canned green beans I always say the green bean picture on the can "looks wrong" and Alex says "they aren't using a commercial food photographer...." but I wonder if he needs to take the green eye test above... =)

"Do you have any milk? I really like milk...."

2011-11-25T13:55:00.001-07:00

Thanksgiving morning we went to Salvation Army in Manitou Springs to volunteer. It was the first time Alex and I were to not have a turkey.

It wasn't hard at all until we got home and there was the owner deep-frying her turkey on the driveway. The smell....

Anyway...

We set up tables. We moved chairs. We covered tables with plastic tablecloths and someone got out the fake pumpkins. We wrapped the silverware. We put ice in cups. We cut the pies, we plated the desserts and covered them up in commercial wrap. We were ready to go in no time.

We also had a food pantry to set up. I have used a food pantry in the past (those were the days, NOT) and as the donated good piled in, it was interesting to see what was there. Flour! Sugar! Bread!

I wondered if the same person donated all the sauerkraut. Sauerkraut, really???

My son came over and suggested I work someplace else. "Mom - you're getting nauseated." I was making faces at all the donated food. Especially the Kraft Macaroni and Cheese and spaghetti o's.

There's something perverse about combining a Home Depot orange powder with a liquid to make a plastic goo to pour over perfectly fine noodles.

I go over to the desserts and plate more desserts. I didn't want them to think I was disgusted by the donated food. I can't help it if I don't like canned ravioli. I don't understand the principle of putting perfectly good raviolis in cans.

I wish I could take a secret poll as they leave.... "Shhh....do you really want those ramen noodles or are you just being polite because they're free?" If someone asked me that in the past as I snuck out of the food bank I'd be terrified. "Is that Channel 12's Troubleshooter News at work?" "Are they going to audit me and find I have a half a bag of flour left in the pantry and I'm taking a full bag?" "Did I take too many vegetables?" and so forth.

There are too many carbs and not enough veggies in a food bank. And no protein except tuna. Yes, we worry about our mercury levels too but we're not supposed to since it's free.

When you are poor (like me) you can't be a Michael Pollan fan and eat edible food substances.

When you are in genuine poverty (unlike me) you have to eat canned ravioli. I hope I never get to that point.

I still won't eat tomatoes. Tomatoland ruined me.

One of my duties was to bus tables or get more tea or whatever they wanted. I rather enjoyed this part. People appeared genuinely shocked you were willing to get something for them.

One toothless wonder of a woman, very sweetly asked me for coffee. "And three creams please", she said. Off I go to get her coffee and three creams. Note to self: remember who she is and what she ordered. You don't want to deliver the coffee to the tea drinker and the tea to the coffee drinker.

Even when the food is free they deserve great service.

We only have packets of non-dairy creamer. I know she's not going to like my news because I don't like the news. I want her to have cream too. Note my canned ravioli problem.

I get back with the the three packets and she sighs. "I'm sorry, I don't like non-dairy creamer, do you have any milk? I really like milk..." Hmmm...milk? "Let me go see..." We have no milk. It is hard to lipread a woman with missing teeth but we're doing okay so far.

I tell her we have no milk. Her face is very expressive and her disappointment was as plain as day and she very sweetly says "it's not your fault girlfriend".

Taking a turkey break outside

Me and Mom

and I like to think the girl in the middle is Nicole

(it kinda looks like her in the picture doesn't it)

Andrew and a friend

(no they're not dating, so don't ask)

Before the rush

Pictures taken with a camera phone so.......

Happy Thanksgiving!

2011-11-24T00:00:00.000-07:00

May your turkey feathers turn into peakcock feathers

(unless you prefer turkey)

Embezzling the store

2011-11-23T11:19:00.001-07:00

One of the best things about working with Nicole is when it came to the complaint dept. we were always in the same line. We liked/disliked the same customers. We liked/disliked our store hours. We liked the same pies from the Tea Room too.

Neither of us could stand my mother's landlord. I could (and should) write a book on our adventures with the landlord but I'd have to go into the witness protection program.

Some things are best left unsaid, they say or said.

Back to working with Nicole. There were some customers we'd see coming and Nicole would sign to me "she's yours" and I'd sign back "she's yours". An inside joke, if you would. There was also an upstairs register and a downstairs register and we had to pick one to work at. We both wanted to work downstairs (cuz it's where the candles, smell-goodies and pretties were)

We hated working with greeting cards with the upstairs register. We said the same thing...."why do people come in and say as they walk in.... 'do you have a first birthday card with a purple helium balloon with a tall giraffe on it, preferably a pop-up..." and we actually spend five minutes not only looking for it but finding it and what do they say, thanks but that's not what I am looking for?

Are you kidding me?

Our profit on that sale would have been less than a buck. Go away and never come back.

But then there were other customers we'd see that made us smile big. Even if we knew they weren't big spenders because they were simply nice people. Like Sandy. And Marsha.

One of my favorite memories was the year we both decided to embezzle my mother. We did a cash return pay-out every other day (you'd think my dad would notice an excessive number of cash returns but no he didn't) and I kept all the receipts and cash at home. At Christmas time, I handed my mother the envelope with the cashed out receipts and cash - and Nicole and I told her to go buy a new computer. I needled my dad for not noticing the excessive number of cash returns for the year - and he said "that won't happen again" and I did a cash return the very next day for fun. He didn't notice and I gave it back to him lol.

He laughed and said, "You caught me, now would you stop it we can't afford this!"

Working with Nicole

2011-11-22T12:31:00.001-07:00

For many years my parents had a retail store called The Paper Garden located at Artisans' Alley in San Antonio, Texas. Click here. Our store was located by the front doors on the right. (see picture) We sold everything from Yankee Candles, custom invitations, greeting cards, Old World to Dept. 56, and more...

I worked with Nicole and Mom for several years - customers were surprised to find three generations working together. I never knew those years with Nicole would be so important to me later. We had good times, we had bad times.

Our favorite time was closing time. (not mom's - Nicole and me!) =)

One year Nicole told me "Mom, we need lots of pickles on our tree this year!" so we took extra pickle ornaments home. The legend goes if you have a pickle ornament on your tree it will bring you good luck.

I want my money back, they didn't work.

Working with Nicole was both difficult and fun at the same time. Difficult because there were times I knew she was drinking on the job but I could not prove it. Like all addicts, she was adept at concealing evidence. I wasn't oblivious to what was going on, at all. I simply didn't know what to do since it appeared everyone else was unwilling or unable to connect the blazing dots.

One year we had a genuine Friday the 13th in which a customer was seriously hurt in our store. No need for details but only Nicole and I were there and Nicole's reaction was to freeze. She was of no help, lol. She is not the paramedic-y type if you get my drift. Blood, cuts, injuries, make her seriously nauseated.

And so do things like wet bread in the sink. When she told me that I said "well, don't leave wet bread in the sink" and she rolled her eyes at me. =p

Back to the customer who was seriously hurt:

Me: "Call 911! Now!"

Nicole: "911?? Are you sure?" (well, she's screaming her head off)

Me: "Yes, 911!!!" (no, we want to leave the customer with the two broken arms and legs on the floor...)

After we got through that all I could think about was how much Nicole was going to drink that night and not the customer who seriously injured herself in our store.

Try walking a mile in legos

2011-11-19T13:06:00.001-07:00

Let's go walkin'...

I am a planner by nature which is why life is especially hard when you plan, plan and plan but find yourself going backwards. Those who don't make plans fare no better with their lives so I see no reason to cross over to the dark side.

But.

As a planner I tell myself I must reconstruct my deconstructed life. I am tired of lugging around the big suitcase with the ugly baggage label screaming "GRIEF" in permanent marker. I want to store it somewhere. (is that possible, I whisper to myself)

Instinctively I know the first step is to get out of this place but Alex needs a job. The employment numbers are very discouraging. I tell myself, it's just one job. Just one. Only one....damn job. That's all.

Start with building blocks all the grief books and experts say. Start with the small things. Yeah, yeah. Look at the virtual shoes I am wearing. The wrong misstep - weight in the wrong place, everything falls. It must hold me up and take me where I need to go.

Wobbly damn shoes.

Grief Class #2

2011-11-18T13:40:00.001-07:00

I walked in and turned on the lights. As usual I was early. Okay, grief class starts at 11:00 and it's 10:59 am. I'm prompt, if nothing else. As soon as I do, an elderly gentleman walks into the room. "Is this the grief class", he asks? I tell him yes. Immediately he starts talking to me - "I lost my wife a month ago and I don't know what to do" he says. "We were married 47 years and we have no children. I'm all alone."

Welcome to our paradise.

I tell him to sit down and get comfortable (I'm faking it, I'm not the social worker) but I don't want him to bolt outta there - thank God he doesn't. It is his first outing since his wife died, this grief class he tells me. He appears very - frail. I am afraid for him.

I wonder if I look that way to other people at times. I am quite sure I do at times.

He points to his chest and says "it's a physical pain, (thumping chest) it aches so bad I feel it physically, do you?" and I assure him I indeed, do feel physical pain over the loss of Nicole and we both have tears. He keeps pointing to his chest and saying "it hurts". I think he was in his mid 70's. Yes it does hurt. Not like a boyfriend dumps a girlfriend kind of hurt but more like a getting hit in the chest with a springloaded sledgehammer set on maximum stun and that's after the Mack Truck runs over you.

Right then the social worker appears with a big basket of muffins, holiday napkins and I introduce him to her. "I'm glad you came back" she says to me. I think to myself - well, Nicole didn't come back so I came back.

And as we progress he talks about how bottled up he feels, he wants to cry but can't. I tell him I imitate Victoria Beckham (minus the shoes, clothes, husband, money and cute baby) and wear big f-ugly sunglasses and never smile because behind my sunglasses I'm busy crying for both him and me. Not sure he knows who Victoria Beckham is but he did smile. I probably should have said Jackie O sunglasses (he knows Jackie K, right?) but I didn't. He asks me when I cry the most and I said "when I see families with children".

Dang, it's hard to lipread the elderly.

********************

We have our own Penn State sex scandal going on right now in Colorado Springs at Hilltop Baptist Church. Click the link to read. Click here!

I want to occupy a...

2011-11-17T10:11:00.001-07:00

cocoon somewhere safe.

Where do you go to occupy when you think your life is in shambles and you honest to God don't know how it fell apart so fast, so quickly? A look back gives very little insight as to why people make the choices they do. As I've said before, Nicole's alcoholism will always impact us. We carry the weight of her decision(s) around daily.

All my tidy ducks in a row were shot out of the stream and their bodies made a bloody river, I must say. The funny thing (did I use funny and bloody in the same paragraph) about ducks is I kinda/sorta like to collect yellow rubber ducks. At least they float even if you shoot them out of the water. Gallows humor, gallows humor, gotta have some to get through the day....

I am trying to survive today and want tomorrow to come and not bring today.

How did I get from occupying cocoons to rubber ducks, maybe I'm quacking.

Quack!

O Christmas tree

2011-11-14T10:32:00.001-07:00

Since Nicole died everything takes on a BD and AD type of memory. Before death and after death. It is instantaneous, this BD and AD association. You can't help it.

Before she died, I had four beautiful Christmas trees plus all kinds of smaller treasures - my Christmas collection is enormous.

I have not put a tree out since Nicole died. I do have my Christmas ornaments in the bedroom closet.

I have ten boxes.I made a point of not putting them in storage. I am protective of them for some reason. It's a lifetime collection.

I don't want to look at them this year.

I don't want a Christmas tree this year either.

I don't want to see eggnog in the grocery store because it reminds me of Nicole and how she always heavily spiked hers. Heavily.

Alcoholism does not end with her death. It continues on, I am living with her alcoholism. And now I am living without her and Christmas trees and that pisses the living daylights out of me.

"Roll your hair, be pretty for God"

2011-11-13T08:12:00.001-07:00

Diane said she would have never sent me off to boarding school if she was my mother but the truth is, my mother had no choice. I begged to go to the deaf school. I demanded a change. I was not doing well in public school once I entered junior high. Elementary school was great - I had friends, one teacher but when junior high started - all the mean girls came out to play and torment. A different teacher for every subject confounded me even more. I was lost in a sea of voices. This was before ADA, I am 56 years old ya know.

Did I just broadcast my age?

State Schools for the Deaf in my opinion are obsolete now. A controversial opinion, to be fair. I don't know why taxpayers fund them. Students can now attend local schools via mainstreaming. Why send them off now? Yes - I know there is that rare child who lives in a rural village out in the boonies who might not have another deafie to socialize with but is that the government's problem? A better option might be for the parents to move.

But back in my time, options were very limited.

I still tell Mom I never figured out why that one school would take me out of class in the name of "special ed" and have me sit with kids in wheelchairs, blind "shaky" kids, (my child-like term) and "other unknown disorders" (I think I was in 3rd grade) and it scared me at that time because I didn't know I had a disability at that time lolololol.

No one told me I was "disabled" or whatever word you want to use. I was used to being deaf and nobody in my family treated me "special" so for the school to suddenly pull me out of class to join what I called the "scary kids" scared me! They were seriously disabled (to my young mind anyway) so I thought something was "wrong" with me. I mean I knew I had a hearing problem cuz I had a big damn box on my chest but it didn't bother me unless it was giving me a problem of some sort. I only knew that in order to "hear" I had to look at the person speaking, otherwise forget about it.... I didn't know if I was going to be "one of those kids" or what. I never did ask but I did worry.

I also remember a hearing test in which I was hooked up to wires and when I heard something I was shocked - literally. A hearing test in which they wanted to make sure I wasn't lying about my hearing loss. I'd hear the beep and wah, wah, an electric shock was coming my way. I figured it had something to do with the big box on my chest but nobody told me why hearing the sound would shock me.

I still tease Mom about that hearing test - and I will never take it again lolololol.

**************

This is going to sound very strange because it will sound like I am mentally deranged but hey. I still remember what it was like to be a teenager.

It wasn't until I went to Texas School for the Deaf that I realized I could tell people to 'eff off but it took going to Alabama School for the Deaf first for a year to do that.

Alabama School for the Deaf was the coldest, loneliest place on earth. My housemother never smiled or had a conversation with anyone. (or had relief duty it appeared). She didn't know what on earth to do with a 13 year old in a dorm of 18 -21 year olds. She had the warmth of an ice cube. The dorm was devoid of personality and you were not allowed to decorate your space at all. Not even your desk. Everything in the drawer, even your pencils. If I left my pencil out I heard "please make your desk tidy". Tidy???? Once I put the pencil under the mattress just so I could but it scared me so badly I never did it again.

I was afraid I'd be killed or something. I didn't understand that place. It was void of laughter.

At Alabama, I was in a very strange world. Had I gone there another year I think I would have snapped, and not in a good way. Nicole told me the scariest movie she ever saw was "The Stepford Children" and I told her that was Alabama's deaf school. Perfect children lived there. Or appeared to back then to me. I don't know anything about Alabama's deaf school now. I only went there one long year. It is where I learned to sign, and fast. I remember I knew more about what was said than I could express and my classmates would talk about how stupid I was. In their eyes I was an "oral deafie" learning to sign. I had stepped on their turf and it wasn't a welcoming atmosphere. I made no friends that year but I learned to sign, and very fast. I was 13 and in 9th grade with 18 year olds. What I didn't tell them was I had skipped 8th grade to join them.

They had further to go than I did and they said I was stupid. I believed them too because they could sign better than I could.

More on Alabama: We girls had to roll our hair on Saturday night to be pretty for God on Sunday morning. That's what my housemother said. It was confusing to me, this "be pretty for God only once a week" message. Hose was required for the on-campus service in the auditorium. I was 13 and mom never told me about hose nor had she given me permission to wear hose. Mom said I was too young for hose (at home) and now I'm told to wear hose. Panty hose had not been invented yet. Garter belts were confusing to this 13 year old (what size do I wear???) but my housemother said God wanted nice legs. A trip to the local Woolworth with my allowance took care of the problem. (two sizes later on my dime - I didn't know what size and the brown tops showed under my dresses, argh) I kept getting runs in my stockings. I didn't want to spend money on stockings. She said I didn't have to shave my legs because "I was too young". I was living in a dorm with the 18-21 year olds because I was in high school so some of the rules applied to me but not all of them but it was up to me to figure out which rules would apply (not get me in trouble) and which ones would not. (get me in trouble)

I was used to walking in straight lines, turning corners on a dime, finishing everything on my plate whether I was hungry or not, (and we were required to wear rollers to dinner Saturday night even though the boys could see us clear across the room which simply mortified me) and the one thing that makes me the maddest - being told I had to cut my waist length hair to very very short before I showed up on the first day of school. When Dad was transferred to Texas, I was glad to be out of that very, very cold hell.

What I hated the most, the very, very most was how they hauled all of us into the auditorium and made us vocally SING to our parents at Christmas time. Sing with our voices???? What voices? Some of the students had no voices. I can still see the faces of our parents flinching while their deaf children "sang" on stage.

We were paraded about like circus freaks.... I couldn't wait to get off the stage. It was a mockery.

My first day at Texas School for the Deaf - on day one I knew it was different.

None of the students were walking in straight lines. Some were holding hands and not a single chick had hose on. (in fact no one wore hose the entire time I went to school there, yay) The guy named after a vacuum cleaner asked mom what Church I was to attend and mom said "ask her" and woohoo we were off and running... I get to decide! Something woke up when I saw those kids walking freely with no hose. I wasn't going to be a sheep or an ostrich anymore.

Alabama taught me that the powers that be wanted deafies to be like headless sardines - all the same size so they all fit in one zipped up can, all packaged and ready to go. I wasn't having any of that.

So back to the Church question - I said "what church do most of the teenagers go to" and he said that wasn't a good answer and I said "you want me to go to Church, right?" and he gave me the name and I said "I'll go to that one". No more straight lines to walk in. No rollers on Saturday night. No more garter belts and hose.

Free to be me but imprisoned as well since ADA had not yet made its appearance.

Now with ADA parents can and do mainstream their deaf children into the local school system. A much needed and welcomed change.

The world of silence is the real world

2011-11-12T08:12:00.001-07:00

Nicole and I used to talk about code-ies. A term for "code of silence". She called them codies, or "things you can't talk about" meaning the elephants in the living room. Nicole knew more about my deaf school days than most. I don't know why except maybe because she kept asking. She thought it would be "cool" to go off to a boarding school until I set her very, very straight.

She had this idea in her head it was like going off to college. Ah, no. It's like going to jail with no visible bars. The rotating houseparents are your jail wardens. At my school the substitute houseparents were the young students from the University of Texas - our saviors. They were the cool hippies, the drug addicts, the predators, the ones that relieved us from all our cruel and unusual punishments. We bonded with them. The old biddies were constantly punishing those of us who would not submit to their will. I was one who would not. Would...not. Would not. In fact, I still would not. They were wrong and even now I still know...they were wrong.

The old biddy told me I couldn't flush the toilet because "it was too loud". Kiss my arse. Wait, don't....

My mother was always being called down to discuss my "problems". Mom lived out of town, so driving down was no small feat. We're talking hours here. HA! Mom wanted me to cooperate and I would not. She felt it would make my life easier but I had no idea how to shut my mouth off. So I kept flushing the damn toilet and getting grounded for it. Since I kept getting grounded I learned to sneak out of the window. She never noticed I was gone anyway.

I don't know how to play sheep or ostrich unless I am really tired and thankfully I'm getting tired more often.

A look back -

At my high school graduation I heard that xxx, a student graduating with me was several weeks pregnant. Hmmm....! A few weeks later she married a teacher from the deaf school about 15 years older than her. You connect those very obvious dots. Everyone said Congratulations! Nobody said "you pervert, you got a student pregnant!"

Another student who was about 16 at the time from my dorm was actively "dating" one of the houseparents (he was about 25...creepy, no?) and would you want your daughter at 15 dating a 25 year old man? Especially if he had pot (back in the late 60's it was a big-time felony) and a way to get Boone's Farm on Friday night. It was only .79 a gallon and nobody had to pay unless they were having bf/gf problems that week. We were at their mercy. Our youthful immaturity didn't allow us to recognize it as it for what it was - sexual abuse. We were puppets on his string. Party time when they got along, no party when they didn't. There is no age of consent between a 16 year old female student and a 25 year old male houseparent.

The first year I was there I did say something to the big man in the building where you go when you get in trouble when I witnessed something. He was named after a vacuum cleaner. (heh)

He said to me "You will go far in life if you keep your eyes focused on your business and only your business" and this after I told him I saw one of the maintenance workers having sex with what appeared to be a student from the lower dorms. I don't know who - it wasn't from the upper dorms. It happened when I went to do laundry which is duh...by the maintenance plant. There were two large unlocked empty laundry vans usually parked there on the landing dock. All kinds of mischief could and did happen in those empty vans.

To this day I do not know who or what. Just that it happened and I was only 14.

Penn State and Deaf Schools

2011-11-11T13:23:00.001-07:00

There it is again, the code of silence.

I am not surprised. It reminds me of sexual abuse problems at residential schools for the deaf. It's on Google.

The focus needs to be on the victims, not the coaches. Why didn't the witness yank the perv off the kid and beat him to a pulp instead of slinking off into the shadows like a stinking rat and "reporting the 'incident' the next day"?

That's giving the rapist permission to contine on.

I hope he goes to jail for not stopping the rape. OMG, to see it and walk away...the boy was only what...10 or 11?

He walked away.

He...walked...away because he cared about football more than he cared about the little boy. Football and money. I don't care about college football but even I know how big Penn State football is.

Back in the 80's I applied for a job at residential deaf school. The interview was zipping along quite nicely until we got to the last question. "What would you do if a student ran up to you and said 'Help, help, I've been raped?'"

I said something like I'd make sure the student was okay- then I'd call the police (at that time I don't remember if 911 was 'invented') then I'd call the Supervisor.

Dead silence, ugly faces

"Don't you think it would be better to contact the Supervisor first, Mrs. xxxxx" one of the interviewers said oh so helpfully... They are handing me clues. They had already told me I was the only deaf/signing applicant out of a mandatory pool of 50 and were thrilled with me. We would be ranked in order, from 1 to 50. I knew I had to change my answer to get this job.

I refused to change my answer, ah well.

I was tired of the code of silence found at deaf schools. Sexual abuse is rampant at deaf residential schools and nobody calls the police either. I know, I saw, I told, everyone said hummm......

Back to the interview. They told me they "prefer we called the Supervisor and let them determine on a case by case basis on how to handle each situation" and my reply was "I can't do that, the student would need a medical exam and the police would be required to sort out things". Something like that. It's been awhile.

Just like at Penn State. It's about the children, people.

Not football or jobs.

When the letter came from the deaf residential school I was #50. I've told this story before to people so it won't surprise too many.

I ended up getting a job there anyway under Jimmy Carter's JOBS program (heh) in a different department and boy were they surprised to see me! (we have the deaf, deaf/blind and the blind)

En Garde.

Our Rehab experience

2011-11-08T11:03:00.001-07:00

We made it.

(with slightly red noses)

SEEEEEEE??????

Happy Birthday Nicole

from your brother and mother

taken on 11-7-11

Mom took these two pictures before we headed out to the inpatient Rehab Hospital with Nicole's birthday cake with In memory of Nicole on her birthday in bright blue frosting. I could barely look at it. When we ordered it last week I cried all the demodex folliculorum mites off my eyelashes.

Yes, I had to google the spelling but at least I know we have eyelash mites. More than one kind, actually. I think it is kind of cool how the really creepy monsters are too small to see.

I have to give you bloggy peeps credit for the suggestions. Thank you. =)

I didn't plan anything. Neither did Andrew. We aren't the type to plan birthday parties for our dead sister/daughter nor do we know how to stop celebrating them.

Does anybody, really? Emily Post didn't devote a chapter to post-death celebrations. It's stupefyingly painful to think about.

Some of you suggested going to a Rehab facility with cake and when I mentioned it to Alex he took charge since I'm incapable of planning such an event. Birthday cake? Rehab facility? What do we say??? What do we do??? I wanted a message of hope, not despair but Nicole had died. How do you create hope out of death?

Alex is a pro at AA and promptly shares his story while his 21 year sobriety coin is passed around. Impressive, not many people have one. XXI in Roman Numerals smack in the middle. There is the hope. You can remain sober for 21 years. He did inpatient Rehab too.

Andrew wasn't planning to talk but he did. So did I. I didn't say much but I pointed out that Nicole's death did not end her alcoholism. We're still dealing with her alcoholism two years and 5 months later. You could tell a few had not thought of it in those terms. Three people mouthed "thank you" to me. Hugs were exchanged.

So young...much younger than Nicole and Andrew as well....

Andrew is a young 29 and he looked like the old man in this group of young kids.

I was expecting a much older crowd. Their very young faces startled me with their youthfulness. How did they get to this point? What was their story? I don't know, we were not here for that.

Afterwards we went home and I crashed on the couch with Gini and wished it was Nicole I was snuggling with.

Happy Birthday Nicole

2011-11-07T00:01:00.000-07:00

You are much loved and missed...

but now all your presents go to Andrew

Tomorrow is Nicole's Birthday

2011-11-06T10:47:00.000-07:00

She would have been 37 tomorrow. Thirty-seven.

She died 2 years, 4 months and 28 days ago.

Alex thinks I don't remember - but after waking up from my colonoscopy I asked for Nicole. I thought she was waiting in the waiting room.

I will treasure that blissful one moment when I thought she was alive then reality bit me on the butt cheek so that was that.

We are visiting my mom then taking a cake to an inpatient Rehab facility. I don't know anything more.

It is confusing. None of us have experience in this sort of thing.

La da da, the camera came home from the Nikon Hospital

2011-11-04T14:02:00.000-06:00

I bought my Nikon D-90 after my daughter died thinking I'd use it to take my mind off things but instead it starting making me nutty in no time.

Err! Err! Err! Over and over again in the lens windows. The manual said it would do this but it did that. And it wouldn't do that, it did this when that was supposed to happen.

I was the only one to get Err! Err! Err! message. Must be user error on my part. Replicating how I did it was impossible. Alex saw it of course but he was at a loss to explain it.

The quality of my photos were going downhill. I could tell. Plus, what the manual said my camera could do and what my camera actually did...didn't happen. No, I can't go down an f-stop. I can't go up either. It's supposed to, and more.

It was like arguing with a wall.

Being gaslighted by my own camera until it suddenly died on me gave me little satisfaction. I wanted Effect A, and got Effect Z in another language.

Alex found out my camera was part of a recall via the Internet and called Nikon. Even though it was out of "warranty", it was part of a recall so they agreed to repair it free. The circuit boards had fried, the fuse had blown and the LED screen had blacked out. Actually - my serial number was not listed on the recall list but it was within a few digits of it and my camera problems were identical to the recall problems so they decided it to include it in the prior recall.

It's been gone since July - but now it's home. I am so glad I can start taking pictures with something other than my cellphone.

Let's go, camera!

Wanna smile? Only takes 13 seconds

2011-11-02T11:09:00.004-06:00

This dog reminds me of my daschie Gini. BTW, we're in the middle of a blizzard.

Diagnosis: IBD and a bad propofol joke

2011-11-01T14:43:00.000-06:00

IBD - is short for Irritable Bowel Disease. And ohhh! I have a very long colon with lots of twists and turns.

Sort of like my life.

Alex said when I woke up I cussed when told the diagnosis. And that I asked for Ginger Ale. What is remarkable about asking for Ginger Ale is I never drink sodas because I must be the only person on the planet who hates soda.

Thankfully he gave me water instead.

The nurse said something about "my husband Alex" and I said "don't give him a demotion, he's my boyfriend". I don't think she smiled but Alex sure laughed.

Before I went to the hospital I did a quick news check on the major sites and saw the following article about IBD. Maybe dad sent me a link from Fox News about IBD since the timing was kind of interesting. Halloween, his birthday, colonoscopy...

Ghouls just want to have fun

The phone rings in the middle of the night
My father yells what you gonna do with your life
Oh daddy dear you know you're still number one
But ghouls, they want to have fun
Oh ghouls, just want to have -

Click here: A Halloween message from Dad

Nobody at the hospital had a costume on. =(

When the anesthesiologist said he was giving me propofol now I said "Oh goodie... I get to try out Michael Jackson's sleep aid" and he gave me a scowl as I went down for the count. I was trying to be funny but it didn't go over well. It's not an everyday event for me, several males getting ready to study and photograph my colon....

Happy Birthday Daddy!

2011-10-31T00:01:00.000-06:00

I miss you.

Colonoscopy prep day....waiting is hell

2011-10-30T11:05:00.003-06:00

Gurgle...rumble... Nothing has happened yet. I've swallowed the pill but haven't drank the solution. It's not time yet. I'm in no hurry or am I?

Gurgle...rumble...

It will be two days before I have coffee. I cannot drink coffee without cream. I'd rather go through caffeine withdrawal than drink muddy brown caffeinated water without cream.

Gurgle...rumble...

What makes someone decide to become a colonoscopy Dr, I wonder. I mean really. Looking at rear ends all day and hearing about colons. Can't be fun.

Gurgle...rumble...

I've finished the solution. I drank in four big glasses. None of this "drink through a straw" as fast as you can stuff. You can't taste it if you go fast. And yes, your belly gets bloated very quickly.

Gurgle...rumble...rumble...rumble...

Goodbye.

Waiting is hell.

My Bucket List

2011-10-29T14:52:00.001-06:00

Neither Alex nor Andrew know I have a Bucket List. Now you guys know. They'll know when they get around to reading my boring blog. In order for my Bucket List to be fully completed, it requires I live in a place I know I'll never leave again.

A road trip to visit various bloggy friends
Go to the Compassionate Friends International Conference in Costa Mesa, CA in July, 2012. I really want to go.
Plant a memorial garden - with outdoor tiles using Nicole's art, grow pumpkins in dad's memory and have hummingbirds for my grandmother. Gardens grow, so that makes you feel good. I remember Nicole telling me "mommy you always look happy when you're in the garden" before she went back to San Antonio.
Zip-lining. Let's go. Just not too high off the ground, please.
Those cute little Vespa scooters - I want to rent one and zip about in a cute little town.
Visit Boston and see for myself, the freeways built under the city and the people walking above...
Visit New York City and stare at Times Square.
Go to Oregon in Nicole's memory. She always wanted to live there.
Get my stuff out of storage and touch it for a long, long time.
Never move again.
Hang up Nicole's art and stare at it for hours.
Learn to cook again.
Volunteer.
Grow a vegetable garden and share with neighbors.
Buy shares from local chicken farmers. Prolly a pig too. Maybe a bison!
Get a chicken coop.
Hang clothes outside.
Go to Maui.
Go to Spain.

That's my bucket list. What's yours?

Back to the world of bloody addiction...

2011-10-28T14:11:00.003-06:00

A bloggy friend said something I profound about Celine's death (How I lost my sister for good) and you can read her comment at (read it here) (Achelois)

I am bloody grumpy about alcoholism too, Achelois.

When people ask me why Nicole died I say "she died of multiple organ failure brought on by alcoholism" because that is how she died. Leaving off the last four words does not make her death prettier, it makes it honest. Most of the time the response is kind - "Ohhh - my mother, daughter, son, brother, etc. have drinking problems...." so 'drinking problems' are more common than the common cold.

Which takes me to my next point.

I do not understand the stigma of alcoholism. If we do not stand up for our alcoholic children, who will? I sure will. Even if I can only do it posthumously.

I am soooo NOT ashamed of her alcoholism but I am tired of not knowing what families are supposed to do. I don't know why no one said anything about Nicole's drinking except there is a fancy name called enabling. Did I enable? Of course. I did along with every single member in my family, we all enabled Nicole in different ways.

But so did her doctor, when he said "We treat alcoholics on an outpatient basis with Ritalin..." (she had been on it for years...!) and I'm thinking he's crazy (Nicole made Celine look like a Supermodel) but he's a DOCTOR, right? A DOCTOR. I'm asking for her to be admitted because she looks pregnant like Celine but he's the Doctor.

Most Doctors know absolutely nothing about addiction (or MS, lol) but neither do families.

Nobody seems to know what to do when it affects their family and I'd rather take it on like a scientist. Why is she drinking? How can we help? What's with the judgemental attitude, folks? (not bloggy peeps - the world at large)

I have MS. I'm not being judged. (well...maybe that's a bad example, lol) Read Diane's Top ten misunderstandings of MS if you don't know what I'm talking about. I refused to feel defensive about MS and I'm not apologetic about my daughter's alcoholism either.

Alcoholism affects more than the drinker. It affects the entire family, even if they aren't aware of the alcoholic's drinking. Alcohol and drug addiction changes a person's personality. How one can miss those changes is beyond me. Addictive behaviors shine bright like the sun. You almost need sunglasses to avoid their blinding light.

Changes mean a disease process is in motion, much like cognitive changes in MS. At times I get a bit frustrated when others forget I have changed.... due to MS. I accept changes because I am not a fighter anymore. No, I don't need cheering section. I don't need anyone to ask "are you depressed"? I am not depressed. Not clinically anyway - but I am traumatized. So sayeth the therapist.

I feel like my post has ADD but oh well...at least I'm not on Ritalin.

I have an eating disorder, I think

2011-10-27T20:36:00.000-06:00

I told Alex and Andrew I had an eating disorder but really I don't have one. I want to eat normally but I can't seem to.

I don't have a normal appetite at all. I guess that's why I'm having a colonoscopy on Halloween.

According to a newsite I found out that Anderson Cooper only eats food from Boston Market. I wonder what he does when he's say...in Iraq. He's apparently a vErY picky eater. That made the news...but I think that's because he's Anderson Cooper otherwise who cares, right?

I have never been a picky eater but I am one now. Picky eater, picky eater, picky eater! I hate being one.

Just listen to me now!

Everything on the side, please. (WTH?)
Are the onions really carmelized or are you just sorta cooking them...
I don't see anything I want on the menu I want. Not one thing. (not even one??)
Alex, what's wrong with the coffee. (I always know when we get to the bottom third of the bag. Without fail.)
As soon as I see lunch or dinner served I lose my appetite. So much for all the hard work.
Can usually eat a few crackers. Especially animal crackers. Animal crackers???
I don't want my food to be red, at all. Like Mexican food...or Italian food...or Tex-Mex, gag. Forget about chili and pizza. And no ketchup! I don't know why but it can't be red. Can't. Be. Red.
Fried stuff makes me nauseated.
A little bit of chocolate (not a lot - just a tiny bit) makes me feel better but that's not dinner.
I can go a whole day without food.
I hate the pink white icing that comes in canned cinnamon rolls, I don't want to see pink food coloring at 6 am so I can stare down breast cancer with every bite. I want clear glaze but nooooo, it's white or pink, wah, wah... so small bites, small bites and keep your eyes closed.
Yes you can stop with one potato chip, I do it all the time. One potato chip a day.

I am now drinking Ensure. It makes me feel old. Well...maybe I am old. LOL.

Blue Man Group - rave reviews!

2011-10-26T13:15:00.001-06:00

I thought the Blue Man Group concert would be sorta like Stomp - different with blue faces, plumbing pipes and lots of colored water splashing everywhere. Nope. Not at all.

I don't know how to describe Blue Man Group. They're so snarky and funny. I didn't know it was a stomp type comedy musical using colored water, lights, giant balls, marshmallows, twinkies, streamers, science, plumbing, fractals, and sight. (they explain why you have sight) and they prey on audience members and self-consciousness, and how people don't talk to each other anymore but send t/m's. Heh. It's a social commentary about humans and it's very funny!

As they were scouring the audience for victims one Blue Man made direct eye contact with me for way too long of a time. I gave him my don't you dare stare. Andrew saw the whole thing go down lol. I was not going on the stage and the Blue Man knew it. We were sitting in a very desirable place due to my disability accommodations but he didn't know that.

They were searching for a victim for the fancy twinkie dinner social awkwardness experiment which is hilarious by the way. They all sit down to eat a single twinkie. One Blue Man spits out his twinkie and offered it to the victim. What did she do? She ate it! Then her vest starts squirting out what looks like vanilla pudding and she's disgusted by it. (disgusted? you just ate a chewed up twinkie!) The other Blue Men's vest squirt out vanilla pudding (?) too. Apparently it's edible because they are sampling it.

I laughed and laughed because she wouldn't eat the squirting pudding but she ate the twinkie that came out of the Blue Man's mouth.

Another thing - two giant cell phones took stage and started texting to each other about how they text each other too much and need to talk more - it was fabulous! I cheered! Andrew and Alex know if they get on their cell phones while "on a date with me" I start making threatening noises... saying stuff like "Do you want me to move to another table while you two are on your phones...." and their phones disappear.

We learn why we have sight - the cones, rods, and visual perception explained. Lots of eyeball closeups as well as a visit down an esophagus.

Ohhhh, and then a bunch of marshmallows are thrown (and caught) in a Blue Man's mouth and he makes (ewww) a very tall sculpture out of it and dumps it into someone's purse. I hope she didn't mind.

I hope to see them in a bigger venue again one day. I can't believe they came to little ole Colorado Springs and performed on that tiny stage.

And today it's snowing - so far about 10 inches but tomorrow it's to be 60 degrees.

Life is crazy like that.

I hope the Blue Man Group doesn't use coffee grinders

2011-10-25T11:27:00.001-06:00

Tonight - is Blue Man Group night

For years I have wanted to see the Blue Man Group. The type of music they make really sound good with a cochlear implant. Stomp is another. Operas I don't like because they tend to carry a single note too long and it annoys my implant (and me) to the point of cutting off the processor repeatedly, most times.

That is called compression, it simply means the implant can't handle that much sound at once if I remember right - ah sheesh, I should google the term but I think that's what it is called. My implant shuts down if a sound's too loud/high and it's different for each map.

I have an interesting compression problem now. When Alex turns the coffee grinder on, my processor shuts off because it can't handle the sound. It can be fixed with a little programming, but not today. I have to get hooked up to a computer and all that rot and I'm not sure it's worth the trouble yet. Only the coffee grinder is giving me trouble along with operas that have lonnnnng high notes...hardly worth crying to the audie over.

I hope the Blue Man Group leaves their coffee grinder type stuff at home tonight. =)

Got reprogrammed after grief class and heard the dog pee

2011-10-24T15:59:00.003-06:00

It was grief class Friday. I am the solo student thus far. The other twodidn't show up unfortunately. She says I'm doing well considering everything I've been through. All the changes. I suppose. I'm getting out of bed instead of banging my head on the table.

Grieving alone is not as much fun. I am trying to be funny. It's not working but well Nicole would have laughed with me if she could. We did have a strange sense of humor about these kind of things because we didn't understand death. We had already been through this. One dies, and then what? We threatened each other with hauntings. Little I did know she would soon die.

After grief class it was time for my audiologist appointment because I'm having cochlearimplant problems (still am) but now I have a new "map". A map is acustomized software program for the implant that allows implant users to hear.It is created jointly by the audiologist and implant wearer based on feedbackthe user gives.

What a difference my new map has made! I can hear birds again. I forgot I was supposed to hear birds. I hear the leaves crunchingunder my feet. How wild, I forgot those sounds too. When Gini pees, I hear her. Cool! Dog pee sounds, that one is new! Ihear her shake her head and hear her ears flop against her shoulders. I hearher whimpering for a treat. I hear her toenails clacking on the tile. I hear the garbagedisposal going off in my landlord's kitchen.

A side note: I remember the day I was "activated". That means"turning the device on". It sounded horrible. It was sobad. I wanted to rip the thing off my head, nothing sounded right. Except onegood thing did happened with Nicole. We stopped by my parents house quickly and I heard birdsfor the first time. I turned to Nicole and said "Are those birds?"and Nicole got all mushy and weepy like she does and said "Mommy heard birds, wah, wah..." (little did she know that was all I could hear) andeveryone is enjoying their Hallmark moment but the new sounds my brain perceived felt like "worms tunneling around my brain", not sound as I knew it. Uh-oh. I hated that sensation.

I knew everything would be okay eventually...because I heard birds.

As time passed I got better and better maps and my brain adapted and learnedhow to hear and I fell in love with my implant.

So much happened I guess during this past couple of years ormore, I really don't know... I haven't paid attention to my implant. I have ahearing aid but it annoys me. It's like hearing in a barrel. And backgroundnoise, oh goodness.... restaurants, the echos. I didn't know I wasn't hearing well. It crept up on me. My life is very quiet.

So after getting loaded with my new software, I find my new map is quiteremarkable. I can hear Alex's words now. I hear each word instead of one longsound that sounds impossibly like a paragraph-long blurrrr sound.

Listening to Alex talk is a shock. He has this strange accent, he's from NewYork. I've never heard it before. Okay maybe it's not strange but I'm fromLouisiana.

Back to the implant -I am still having issues with the implanted portion.I hear jet engines and air conditioner hummms whether or not the processor ison or off in the implanted chip at times. Annoying as hell, and veryvery loud. I can't even hear with my hearing aid in the otherear. Today it is thankfully behaving as it should and hope that's the last ofit but last night it was humming along like an air conditioner. The weird thingis I could turn the hummmmm sound up with the volume control and down as wellbut it still went on after I took the processor off. It is not supposed todo that so it is a little scary. I do not have tinnitus. (just so youknow) It has woken me up because it is so loud.

Shut up. Go to sleep, computer.

This morning I had my foot biopsy. It's not melanoma (had it in 2003) butthe dermatologist has no clue what it is so we'll know in two weeks. I'm notconcerned at all. The injection, biopsy, and band-aid took less than aminute.

He spent more time telling me how I need to change my morning routine thanhe did doing the biopsy. Here it is:

Get up, go to the bathroom, brush your teeth, put sunscreen on everywhere.Hands, feet, face and neck. When I said I don't sit out and "tan" herepeated my to-be morning routine. (he does not have a single wrinkle by theway and I am not kidding you he has nary a wrinkle anywhere, not even where wrinkles should be - and no plastic surgery)

Go to bathroom, brush teeth andappy sunscreen everywhere

that'smy morning routine

On the way home I said "are we done with doctors now?"and Alex laughed and said no... one more, the colonoscopy on Halloween. yay.

I read while waiting in the Dr.'s office "that my GI Doctor,neurologist,and dermatologist were listed in the Colorado Springs 2011 BestDoctor's Guide. I'm in good hands, woohooo but wow that's a lot ofdoctors for one person who tries to avoid doctors in general.

My PA said "I know you're tired of doctors but I think youshould go for your foot..." and when I saw my neurologist last week hesaid "I know you're tired of doctors but we might need to talkabout a urologist down the road if you're still having having urology issues..." and hmmmm.....what do I hear? I hear this:

You need to see a Specialist.

I know what I really want and no I can't have it lol.

I want that one special person to do everything including hold my hand, (ifnecessary) writing my scripts, doing my medical tests/interpretations on thespot then send me home when we're done. I hate going there, then here, and back tohere and there again. And oh wait by the way we don't do labs so go over there...

Some lucky people have them. They're called midwives but you have to be pregnantand I'm not pregnant. Or, or, or, you can have one of those doctors if you're acharacter on that tv show called Royal Pains and be a resident on Martha's Vineyard. Not where I want to live.

I want one doctor to make my life easier but instead, I have many doctors because there's too much information to stuff in one little brain I guess.

"How I lost my sister for good"

2011-10-22T17:49:00.003-06:00

How I lost my sister for good. Take a look.

A great link suggested by Subdural Flow II. I see a lot of Nicole in it except very few people knew she was an alcoholic.

Lotus 1 2 3 and cigarette candy didn't ruin my life

2011-10-22T16:09:00.003-06:00

Do you remember:

Lotus 1 2 3
Shaefer pens
Swatch watches
Cigarette Candy
Chocolate Soldiers

This is a chocolate soldier in case you don't know. Some people give me a strange look when I say "I love chocolate soldiers".

Every summer my grandmother let me have a honey bun and a chocolate soldier for breakfast. Or, biscuits with ribbon cane syrup. I don't know which was more decadent. Ribbon Cane is thicker than molasses and that's what we poured on our pancakes.

Cigarette candy: I bought my fair share with my allowance and they did not influence me to smoke or not smoke cigarettes. (what were cigarettes?) I was more worried about getting the "right end" in my mouth and looking cool. Plus they tasted like solid cotton candy so yummmm. (that's what I thought as a child - as a mother, I think differently lol)

Lotus 1 2 3: Welcome to the world of spreadsheets. Everyone suddenly wanted to learn it. I knew it but I found it tedious. I don't remember it anymore. I don't know why I am thinking it about it now but at the time I nearly pulled my hair out trying to figure it out in conjuction with insurance claims. Stupid formulas. What column? Which column? It was maddening, I thought. Now I miss those problems, those were easy problems compared to today.

Swatch watches: Back in the late 80's (I think?) Nicole and I had more swatch watches than shoes. We did not hang on to one pair for old times sake, not a one. I take it we didn't like them as much as we thought we did since we saved everything.

Shaefer pens: the pen that came before the Bic and I'm not sure the Bic pen was an improvement.

Have a good weekend while I clear the pumpkin seeds out of my head...

Nicole's Diaries

2011-10-18T14:22:00.001-06:00

Right now they're in storage but I've decided if I ever get planted again... I'm always feeling uprooted... I'm going to post parts of her diaries. Especially the parts dealing with her battles with alcoholism and how she viewed life as an alcoholic.

*****************************

We are trying to figure out what to do on Nicole's upcoming birthday. No one knows what to do. Since the chances are my son will have to celebrate Nicole's birthday more often than my mom and I will, I feel he should lead the way as her brother. He is after all, creating traditions for himself. I gave him several suggestions but we are lost.

It's not like we have experience doing stuff like this.

I did tell him Nicole liked a particular store that none of us had been to in Old Colorado City - some kind of spiritual store and we could go check it out and see why Nicole was drawn to it and at first he liked it but then pointed out how weird it would be if we all suddenly started crying in the store.

Imagine all of us in there boo-hoo'ing.

Or should we go visit Nicole's high school friend's gravesite if I could find it? And leave a pack of Malboro's like she always did? His name was Travis. She named my parent's cat after him and the cat later died from IAM's pet food.

See, it's like a bad sitcom.

Gini the therapist

2011-10-16T11:03:00.003-06:00

Dogs make very good therapists

Andrew naps with Gini

or is Gini really napping on Andrew...

Sometimes we have to be there for her -

like when she had mast cell cancer.

She was happy to get a stuffed duck to destroy.

(it only lasted a week)

My life is all about me, she says.

(and she means it too unless she needs you as a pillow)

The cat is the mirror of his human's mind...

the dog mirrors his human's physical appearance.

by Winifred Carriere

In that case.... Gini is mirroring what I do every day, ha!!! =) =) =)

Ghosthunters II

2011-10-14T14:56:00.004-06:00

My dad's the shy ghost. =) I decided to show you where he is/was. The other face hopefully is obvious. Now do you see him? Or it?

I admit I feel quite silly...

Now if there are spirits, my dad would be the most reluctant spirit e-vah attempt any sort of "communication" and he only made an appearance because Nicole dragged him back lol. I was not thinking about him at all and only when I downloaded the photo did his eyes and lips jumped out at me like a rocket ship.

It looks like him to me, what can I say. And yes the other one looks like Nicole to me.

It is very disturbing on one level because I question everything. I don't believe anything I hear at first glance. I've learned not to. I like the cold hard facts. I don't like the "ifs, what's and buts" anymore - I have too many of those in my life right now and riding the wave all the time makes me seasick. In short - I like knowing that's simply an eerie shadow or those were a genuine spirits but it's not like that at all is it?

Call ghosthunters or the men in the white coats

2011-10-13T15:00:00.000-06:00

Alex came home for a quick lunch and found me sobbing in the kitchen. I was too upset to speak. When I finally calmed down, I said "I...want...Nicole..." and my October surprise for him began. I let him know once again I wasn't going to ever see her again. And again. And again. And again.

All I can say is the emotion was very intense. My head exploded with grief. Does one explode in grief or with grief? I know one is more grammatically correct but both feel right. You can not escape a person's absence. The loss of their presence is overwhelmingly painful.

I walk over to the sliding glass door to get some air. There she is. I see her face but I do not believe it. "Alex, come here", I say. He comes, and he immediately sees what I see. "Is that Nicole's face" I ask.

"Yes! And ask your bloggy friends" he says as he runs off to HD. I grab my cell phone camera and stared at it some more.

After I take some more pictures I see another face. A profile, if you would. An eye, part of a mouth. I immediately know who it is. It's my Dad. (doubleclick on photo to enlarge if you wish)

I think I'm going crazy, what do you think? =)

53 + 99 + Tea Party = America

2011-10-12T09:56:00.002-06:00

I suck at math but 53 + 99 + Tea Party = America is one equation I am sure of.

What's with all the yelling, screaming and bickering I'm seeing on TV, blogs, forums, families, friends, about politics?

Yelling loudly does not mean your political point(s)

will be heard/accepted/admired/wowed.

I understand some of the points the 53'ers, 99'ers and Tea Party people are making. Do you? Have you listened to each of them or have you automatically put cotton in your ears and proclaimed "they are wrong, they are fools"?

They have more in common with each other than they don't. I'm not going to discuss politics here and you won't draw me into a discussion of such but I do have a point to make.

Why can't we listen more and talk less? And secondly, when we want to make our points don't you think we should engage in a back and forth discussion instead of trying to talk over our ~~opponents~~?

Are they really our opponents or are they your fellow Americans, neighbors and friends?

Or are they the enemy

That's a statement instead of a question since everyone views anyone with a different political as the enemy. (they're dangerous, like rabid wild boars! eek, run!)

We are all Americans and I'm really tired of seeing smart people treat other smart people with a differing political opinion(s) as an opponent with a twisted, damaged mind in need of 'de-conditioning'. (or is that 're-conditioning'?)

We Americans have varying opinions on how to handle things - everyone brings different perspectives and life experiences to the table and we can learn from each other if we take the cotton out of our ears and listen more and talked less but when it comes to discussing politics - we've taken the stance that it's only about my view, and only mine, (it's the only one that counts, yeah right!) and do not e-vah listen to the concerns of the 'perceived enemy' which happens to be you, you, you, you, you and you, right?

***************************

Last night - I dreamed of Nicole. She crawled in bed with me like she often did when she lived with me - said "mommy, mommy, why are you in the basement" and my response - "you put me in here" and she said "I know I did" and she kissed me on my head and went away with a zinfandel in hand.

I guess she's still drinking wherever she is, at least in the very small world I share with her.

I wasn't comforted. The dream was short, unsettled and reminded me of how far I had to go before I get "out of the basement" I mentally and physically live in. It's a nice basement, don't feel sorry for me.

A very strange Wednesday hump-grump day post. =p

Well, HA....what shall I put on my a**?

2011-10-10T13:27:00.000-06:00

My colonoscopy has been rescheduled...again. Chant with me:

We love Medicaid, we love Medicaid, we love....

I am now to have it done on HALLOWEEN. My evil mind is plotting something diabolical. I'm thinking of having Alex draw something on my butt to celebrate Halloween... heh. It is my dad's birthday after all. (Yo Pops...were you surprised to see Nicole arrive before me?)

Maybe I'll turn my entire butt into a pumpkin with magic marker. On second thought...no.

I am thinking about writing "DO NOT ENTER UNLESS YOU ACCEPT MEDICAID" on my rear end with a big smiley face. Or should it be a frown?

What do you think?

My fear is somehow one of the doctor's along the way will be a Medicare doctor and not a Medicaid doctor and we know what that means to my wallet, omg omg omg...

Serving others

2011-10-06T13:54:00.002-06:00

Nicole's favorite holiday was Thanksgiving so I have a very hard time with it. I'd just as soon skip the holidays but decorum (and the fact I have another child) says I cannot do that. This year the holidays are getting to me already and they have yet to arrive. Well they have at Sam's Club because I spotted the blow-up motorized Santa blowing around the pumpkin display... eeek. ~~So cute!~~

When my son texted me and told me his speech in Denver went well and "now it was time to take his suit off and climb into the ditch to clean out the litter" I thought about Thanksgiving for some reason.

I told Alex I wanted us to volunteer on Thanksgiving Day at the soup kitchen. I'd rather we do something for others in her memory than feel her absence all day. I don't think I can bear it this year.

Everyone's onboard so that's what we're doing for Thanksgiving, working at the soup kitchen!

Canned pumpkin decor

2011-10-05T15:33:00.001-06:00

Nicole's canned pumpkin is now part of my fall decorating scheme. I know if she could talk to me she would slap me silly but I'd slap her back and I am not sure I'd be silly about it. We'd be engaging in a full-blown physical fight if she magically walked through the door today, I swear for putting me through this hell!

We had a good relationship while she was living, but excuse me while we have this argument via my blog now that she is dead. I'm very mad right at her right now. I'm sure you've noticed but don't worry...I'm starting an 8-week bereavement class October 27th. I'm not thrilled but I'm doing it for my own sanity I suppose. I hope they are ready for me. It's a small group, they started last month. I'm member #3.

Pumpkin Decor

Note the expiration date

Back to the canned pumpkin photos: Nicole bought several cans of pumpkin in January of 2006 (or so) and asked me to teach her how to make pumpkin bread. I don't remember how many loaves we made - not too many as I was quite ill due to being on Betaseron. (an injectable interferon that did nothing but interfere with my life as well as other people's)

She moved back to Texas before we got to these two cans. (of course - or there would be no story here, right?)

They've moved with me each time I've moved but they are not simply cans of pumpkin anymore because she died. They have become my fall holiday pumpkins. Frak.

I turn everything with her DNA on it into an artifact for my thriving living history museum.

Pisses me off too because the pumpkin cans are as ugly as a robber's dog but the memories of her bringing in those cans saying "mommy, mommy, make pumpkin bread" are beautiful so what am I to do?

I can't throw the two cans of pumpkin away. I can't.

Martha Stewart, help meeeeeeee.......

On a more positive note I suppose.... I'm getting hosed this Wednesday. Finally, my very delayed colonoscopy has been scheduled! I'm getting a general since conscious sedation doesn't work for me. (of course not, I have to do things the hard way lol)

The PA told me she I suspects I have IBD/colitis made worse by stress. The reason? My CT Scan shows "thickening" in my intestines plus other crap (symptoms) I've told her about. Nah, who me? Stress? Nah. But now my liver is in question. If I don't pass the next test I have to go for liver studies. I find it interesting "stress" can cause a thickening in your intestines though.

Sometimes I think it's best not to know too much about what's going on inside.

She went ahead and gave me an a very interesting script - hyoscyamine which you take if you feel the kind of stress you get in your gut...

And....it does indeed, halt that kind of "stress spasm". It is a very strange drug. You put it under your tongue and your colon simply...stops whatever your colon is doing to piss you off. =)

The nice thing about this medicine is you take it only when you need it.

Oh and.....why do Kathy Lee and Hoda always drink to death on the Today Show every morning? Apparently I am not the only one asking the question per my google search. Not long ago their producer served them a non-alcoholic drink and both made faces. I discovered that little tidbit when googling their drinking habits on the Today Show. A lovely message to send to America, don't you think?

Would you vote for this man?

2011-10-03T18:37:00.002-06:00

My son was selected to be a delegate at the Leadership Exchange in Boston by his University. He got back last week. My, my, my... look at his smile and it's still on his face. =)

I had to brag.

It's too hard

2011-09-29T12:43:00.003-06:00

Can you believe someone found a need to create this online postcard?

It is so sad...

I don't understand why people feel the need to say "....but you have another child."

OR...

"God needs another Angel" when your child dies.

Saying that to me will send me into a crazy tailspin. God has plenty of Angels. Nicole's death had nothing to do with God's angel-making. It had to do with her alcoholism. It is important to me people understand Nicole died of alcoholism because she was not able to get help while she was alive. I don't want silence to be part of her death anymore.

I do not need to hear crazy things like this. It makes me not so angelic and that can be a bad thing in my own head. A mental setback can be as bad as a physical one.

Yesterday we were out running errands and I saw a cake pan that would have made the perfect birthday cake for Nicole. For 2-3 seconds I picked it up and said to Alex, "Oh that would be a great cake for Nicole's 37th birthday!" and then crap...I put it down slowly and realized those days were no more and ...

...and.... and... suddenly we were surrounded by happy kids, moms and I found a major panic attack coming on and nooooo...here we go, get those moms and kids away from me please. I can't stand crying in public so imagine having a panic attack in public.

I only remember telling him not to let me freak out or something to that effect. I am sure we looked odd, standing still while he held on to me until the moment passed.

Today is one of those days I don't think I can do the grief thing at all anymore. It's too hard.

The things that go bump in the night

2011-09-27T15:59:00.002-06:00

Sometimes you wonder if people from the beyond talk. Hello, is anyone home? Click here.

I know of two incidents that made me wonder if something.... was going on. One incident happened almost a year before Nicole died. I was wearing a necklace with my father's ashes like I always did. I was on my way to California to see my mother-in-law.

She dropped me off at the airiport - and while in security I immediately noticed he was gone.

Long story shorter, I (she) did find him many panic-y hours later but I had the distinct impression my father was warning me of impending doom. And boom, boom, boom, it went. Divorce, death and well - hell. I have not worn his ash necklace again...I can only wear Nicole's. I have yet to hear from her. Not a peep.

Maybe she's as mad at me as I am at her. I don't know. I didn't keep her alive. I'm not at the point of acceptance yet. =p

These ash necklaces were not intended to be a charm bracelet/necklace but my collection keeps unintentionally growing and it's distressing.

Then it happened again, last week. Someone my son and I both know who lost a sibling called him while he was in Boston. I had no clue they had spoken, it had been a long time. A few days later I decided to visit this person at work. I had no idea they had been in touch.

It was strange, at least to me and my son.

I really wish my daughter would answer the highway to heaven phone and leave some kind of comforting message, however cryptic.

Anderson Cooper and Gloria Vanderbilt

2011-09-27T15:33:00.000-06:00

Gloria Vanderbilt is Anderson Cooper's mother in case you don't know. I didn't know that little tidbit. Not only did I not know that, I didn't know Anderson's brother committed suicide in front of their mother. She appeared on his show to talk about .... well, being his mother and living in grief.

Take a look. Anderson Cooper

A funny side note: As I'm trying to explain to my son what I saw on Anderson Cooper's show, he said about Anderson: "Yes, I know of him. Oh, he lost a brother?"

Wait - I'm not done.

"Gloria Vanderbilt is his mother and there was this mother/son thing going on where she made a cardboard cutout of him since she complained she never saw him..."

"Who is Gloria Vanderbilt???" he says with a very puzzled look....

Nevermind.

Aspen photos

2011-09-26T12:52:00.002-06:00

My fancy-dancy Nikon camera is in the shop and has been since June. I really miss it. The part I need is on backorder. I won't complain - the reason is because of the earthquake in Japan.

These pictures were taken with my cell phone in Aspen so....

Lovely, really. Red door and all!

This charmer had the yard, the front porch

and stained glass...

I adore this baby.

I loved the wraparound porch.

Stunning upper balconey. Not a fixer-upper. =p

And I love, love this sweet house-

I think this was my favorite!

A gaspingly expensive western store.

Not for the meek.

Downtown water fountains

for cooling off...

This cute dog did not move a muscle as we walked by...

He is adorable, as is the car.

If I find more photos, I'll be sure to share! Have a good day, everyone.

Karen leaves first thing in the morning. I will miss her!

Maybe plastic people have tiger DNA blood

2011-09-25T17:10:00.002-06:00

Aspen is stunningly beautiful, especially at this time of the year. The aspens have turned golden yellow. Fall has arrived. My favorite part was the drive - both through the mountains and around the town. I loved, loved, looking at the craftsmen homes. I felt like the little match girl looking inside people's homes as we drove by and drooled at the sweet little homes. I wanted one of the homes but not in Aspen. It is so not, not, not, my type of city. I don't do Gucci, Dior, or Prada. Even if I won the million dollar lottery I wouldn't do Prada. PRADA? Seriously? I could do a lot of stuff with a million dollars but I wouldn't be gucc-ing prada when I could do more with less.

I admit I wanted to knock on their door and evict someone for kicks and move in but I think the Aspen police would not treat me as nicely as they did Charlie Sheen so I dropped that plan. There's no tiger DNA blood in me.

A side note: at lunch a young girl was at the bar slamming back pints of beer. Karen and I could hear her clear across the restaurant. She was laughing, having a good time, and being silly. That is, in her own mind...but not to sober folks. She was very, very drunk. A haunting sight - I couldn't help but see Nicole doing that very same thing. I wanted to go up and talk to her but I knew it was pointless.

So I didn't, and she is still on my mind.

Ohhhhh, and as you can see, we're the only two women in Aspen who did not go under the knife of Aspen's plastic surgeon which is a very good thing I can assure you.

One striking thing about Aspen is the number of men who have had plastic surgery. It became a mental game to count nose jobs. I swear they picked the nose out of a nose book - page one, choice #1. The same highly chiseled nose with cheek implants. I lost count after the 26th male. The women were not far behind. You knew who lived in Aspen and who did not. You also knew who worked in the service industry and who were "local tourists" and "out of state tourists".

You can learn a lot by lipreading facelifted faces. =)

We had a great time, it's a beautiful city with adorable cute homes but Aspen can keep Aspen.

Give me a town with real people.

It's really not a sex toy

2011-09-22T17:30:00.000-06:00

"It's not a vibrator, Karen" I immediately said when I open the drawer to the coffee table. The offending object certainly appeared to be one from her vantage point. I took it out of the drawer and said, "See... sliding thermometer for our foreheads..." and we both fell to the floors laughing.

Karen is still giggling I think. Off to Aspen we go tomorrow.

Image of offending object, a.k.a, thermometer

Off playing!

2011-09-21T08:05:00.002-06:00

I'm the TALL one, Karen's the short one. =)

Friday we're going to take her to Aspen for a day trip and if I see Goldie Hawn I'll let you know lol.

Hope all of you are well.

"You've Got A Friend"

2011-09-12T13:21:00.001-06:00

This song means a lot to me. An old song, one I recall listening to with an old friend as well as Nicole.

Nothing is going right. Your child dies and it feels like all your friends and family have vanished. Where did they go? That's right, grief is contagious. They might lose one of theirs. Or they don't know what to say so avoidance is best. (or maybe I smell bad) Could be they don't want you to say that dead child's name? I can see it in their eyes, oh please, oh please, please don't say Nicole. That kind of panic aint' purty.

Jeepers, Peepers, people. She was my daughter for 34 years. I'll bring her up if I want to. Deal with it.

I don't bring her up to make you uncomfortable. I bring her up only if it's normal to - I am still her mother and will always be. Now that I have that off my chest....

I have a friend I met when at the deaf school in Austin when I was 13 or so. She's coming to see me tomorrow from Texas. We have been through a lot of experiences together - marriage, children, divorce, illness and now the loss of my daughter- the ultimate heartbreak.

It used to be all about boyfriends, blue jeans, leather belts and the wicked houseparents at TSD. We had mean ones, we did.

We are growing old together.

I called her name as the song says and she came running. Thank you for coming Karen. I know you are reading this. Remember this song? =)

I really don't remember much about Nicole's wake but I know she and Tiffany were there. They sat next to me almost the entire time. She will have to fill me on some missing details. Mom still fills me in as to who came and who did not. There are a lot of gaps in my memory of that particular time.

One hot summer Karen and I loaded up our daughters into her hot VW Bug and headed to my grandmother's place in Louisiana for a few days...we antiqued and ate. Ate and antiqued. And our daughters played together...

Then we had sons, and our sons played together...

Good friends.

Vacuum cleaners: give me those bags

2011-09-09T14:49:00.002-06:00

I know it's cool and trendy to have a bagless vacuum cleaner. But here's the problem.

Look at it. Really look at it.

Do you see what I see? It's full. It's sitting on cream colored carpet. Let's say you're wearing white shorts. How are you going to empty the vacuum cleaner without getting the dirt on the carpet, coating your teeth (gag..) covering your shorts and legs?

You can't. I know because I've tried. You have to gingerly put the dirty tank inside the trash can and shake the dirt loose. Guess what happens? It floats upwards and lands all over your arm/shirt/face/hair and teeth if you didn't close your mouth. Then you take a shower.

It makes mud when it meets water. It's dirt.

Say what you want about vacuum cleaners... the bagless technology was a step backwards. Cleaning bagless vacuum cleaners is a dirty, nasty chore. Grey fluffy bits stick to you everywhere and it never felt like soft rabbit fur.

I'm so glad mine takes a bag. I used to have a Dyson long ago in another life but thank goodness it quit sucking. I don't miss getting dirty every time I emptied the vacuum cleaner, ughhhh...

Ever thought about that? =)

Hug your children while you can

2011-09-08T13:33:00.001-06:00

Embrace Life: 9/11 Oh, go on and read it. One little click, you're there. It's not a typical 9/11 story.

Smiling Latte

2011-09-07T14:23:00.000-06:00

Look what I found in my latte from Alex this morning. =)

What would I have done differently?

2011-09-07T14:08:00.001-06:00

One of the things I've learned in hindsight is addicts are very manipulative. Manipulation is not always a bad thing. Say you have meeting to go to (okay, a girl scout meeting) and you bring cookies. Is it manipulation if you brought cookies? Are you simply being nice? If you brought cookies and had nothing to discuss, probably. What if you had a "hot topic" on hand? See...it can be manipulative. It depends on what your intent is.

If I could start over - beginning with day she had her DWI: perfect timing to confront the family on her drinking. She was living with me at the time and thrown in jail. (side note: I now believe in automatic jail time for 6 months, enforced sobriety might do one good as painful as the medicine is to swallow for the family) Shortly after her DWI she moved out. Our relationship had gone downhill because of her DWI, continued drinking and poor financial responsibilities. Plus I knew she had shown up at her Southwest Airlines job interview drunk.

On a different subject, but not: I was proud of her for choosing to plead guilty when the attorney found a way to "get her off". Nicole said "No, I am guilty - I did this so I don't want to get off on technical grounds." At least she took responsibility. Nicole went to AA twice. I told her I was proud.

Then she found an excuse. She proclaimed it too religious and said it was not for her.

I scoffed. Dirt and worms are a higher power if you get right down to it, I said. Mom!, she said.

Try again? No Mom. Butt out.

I found all the empty boxes Zinfandel wine she left behind. There were enough to fill the VW Bug completely. There were enough to build a fort with them.

She didn't care enough to throw them away.

If I could go back in time I would have load up the VW Bug with the empty boxes and taken them to my parents when I knew Nicole was there and dumped them in the living room floor. Then I'd go behind the pool pump, get the rest of the bottles, and go to Nicole's bedroom and get the rest out of her dresser and car.

Let the games begin, let her explain.

I don't think anyone would have spoken to me again if I did that but that's what I'd do lol.

If that didn't work, I'd put a webcam in the living room too to catch her coming out to drink at 12 am, 2am, 4am. Then I'd show everyone the tapes. Explain that one, Nicole.

Something would have happened. It would have made everyone look at Nicole differently. Nicole loved her family more than anything...and that's where we went wrong I think.

I do think she could have been saved. I tell her story in hopes that someone out there is maybe thinking about someone they should be thinking about saving...

Nicole's two last months

2011-09-04T18:10:00.000-06:00

I remember a lot about May, 2009. It was March madness in May. Mom and I had just moved into a two-bedroom apartment with the help of the MS Society. My Medicaid application was started - the paperwork trail is long. Did I say we had just moved? Where was my birth certificate? The SSDI award letter? And on it went. They wanted a lot of information and everything was in boxes. It was a very chaotic time. I had to get on Medicare by June 1st since my COBRA was ending. That took a lot of time since no one wanted to talk to Mom on the phone. Being deaf is a pain in the butt when you need things done quickly. We had to stand in more lines than the average person for this reason.

But what I remember the most about May, 2009 is for the first time I did not get a Mother's Day card from Nicole and the sinking feeling that came with the empty mailbox told me things were about to get very bumpy but I didn't know it was going to end this way.

Nicole was in the hospital for what she said was some kind of respiratory aliment. I am not even sure what she said the reason was now, all I know is it was not true. I asked if I could come down and see her. "No, mom." I could go back and look at my blog and see what she told me the reason was but whatever she said, it wasn't true.

I know because I have her medical records. It says something about her being in detox.

I admit to an odd quirk about my blog. I can't read anything from the year 2009.

I ask her if I can fly down. "No, mom."   "Think about it, please." An hour or so later she texts me back and says "pls come now" and I arrived before lunch the next morning. I was not prepared for what I saw.

Nicole greeted me at the door with tears in her eyes. Gone was the daughter I knew - in her place was a swollen, very ill end-stage alcoholic. I use the term end-stage alcoholic posthumously. I had never seen one before, how was I to recognize one? All I knew is my daughter suddenly appeared 9 months pregnant. I was alarmed but I did not show it to her.

Nicole told me she looked "like that" at the hospital. "And they let you go home like that", I asked? "Yes, and it took me all day to be admitted". I remember it did. I did not think she was dying because they let her go home...like that.

She told me her urine was "brown-ish". I now know it is a sign of severe renal failure. She was so casual about it, like it was normal. That was my own denial at work. I am not a doctor but don't you think I would have at least freaked out about brown urine?  She tells me she has a doctor's appointment tomorrow.

I am relieved. It will be resolved, tomorrow. By the doctor, I tell myself. Doctors fix things.

She is coughing. She tells me she's been coughing she got out of the hospital. "And they let you out of the hospital, coughing?" Yes, she says. I am baffled.

They let sick people go home now. Her medical records back this up by the way. She was still coughing when released, apparently.

I hold her. She smells like she always does. Slightly sweet. I tell her she smells sweet and it makes her angry. It always made her angry. I had forgotten not to say it. She is very irritable. I am patient, I can see she is very ill. She is more upset about a boyfriend problem than her physical problems. Nicole....forget the "boyfriend".

Her feet are swollen. She looks pregnant. I find a pregnancy test kit in the bathroom trashcan. Her denial. Thank God it was negative, a baby with fetal alcohol syndrome...I can't fathom.

The next day is the doctor visit: "She looks pregnant. She's an alcoholic. She needs to be admitted." I say.

Nicole sits quietly for a change. No arguing with me. She was ready. The doctor turns to me and says, "Believe it or not (I don't believe you now) we now use outpatient treatment (why, because she's uninsured?) for alcoholism with adderall (she's been on that shit for years, it's addictive too, Dr. Intern, can I talk to someone above your pay grade that knows more than you about addiction please) and it has a high success rate, besides she just got out of the hospital...." and that's where communication I think broke down.

Nicole had told us she was in the hospital for something else. I assumed he was talking about " the newly discovered alcoholism issues", he assumed I knew about the detox Nicole did a couple of weeks ago but I did not know about it. Nicole said "I'm ready to quit now" but no one was listening to her other than me. He merely bobbed his head and wrote a note on his chart.

A note on his chart. Did you hear what she said? She said...."I'm ready to quit now" and he wrote a note in her chart and sent her home to die.

Typing that makes me want to vomit but it won't do any good.

She was in the hospital for detox and perhaps respiratory issues. I have only obtained the medical records for the hospitalization that led to her death - not the other two prior to that. Maybe one day I will chase down those records but right now I am tired of unexpected discoveries.

I don't know who she told...if anyone. Did her friends know she was in for detox? Or did they think it was "respiratory issues"? I do not know. And the "sweet smell", well Nicole had diabetics due to being a severe alcoholic. She never told me. I do not know when she became a diabetic but she was a diabetic at her first hospitalization. I only know of two hospitalizations but there are three.

Three. Why did she only tell us of two? Where and when was hospitalization number one? I do not know. Why didn't she ask for support?

Back to the Doctor. I argued with him for inpatient Rehab and I am feeling a bit of hope because for the first time Nicole is not saying stuff like "Mom, I can do this alone, shut up!" and she is letting me talk to the doctor but he, the ~~expert~~ of all things medicine is not listening to me. He is treating me like "the uneducated deaf mother of an alcoholic daughter". The smug, "I know everything there is know about medicine" attitude was dripping down his scrubs while Nicole sat quietly on the examining table. She rolled her eyes at me when he did the exaggerated "let me talk to you really loud so you can hear me" thing...something that does not sit well with me at all. I again told him I lipread very well but noooooooo, he kept shouting and Nicole even butted in to say "she really lipreads..." but for a doctor he's not too bright because he's too busy talking, not observing or listening to his patient. I don't recall him even looking at her come to think of it.

I want to know why that doctor did not order one single test when his presenting patient was bloated and obviously ill. She didn't look right.  She was turning yellow and it wasn't from eating carrots. Yes, I said something about her color.

Nicole wanted attention that day. I think she was sick and tired of being sick and tired.

If I could track his name down, I would send him a picture of my beloved daughter, a copy of her death certificate and include a letter....and tell him that 34 year old women are not supposed to look 9 months pregnant unless there is a baby in there and that should qualify for an automatic admission to the hospital. STAT.  He didn't even do a renal test. Hello???? Now I know more about the color of pee, what tests should have been ordered and dammit it is too late for my lousy medical knowledge to be utilized.

Now I say all of us should go to medical school on the internet. It might save a life.

I spent a week with Nicole. When I look back, I see some oddities. I never saw her drink water. Not once. I had my water right there, where was hers? I kept expecting to deliver her child. The pregnancy test had to be wrong. (now I know it was ascites) For the first time, we spoke very little about her drinking. I had said all I could say. I said what I needed to say in the Doctor's office.  We watched 28 Days starring Sandra Bullock. She had her own copy. I don't know how many times she's watched that movie but I had a hard time watching that damn movie that night. Again. I wanted to take that movie and throw it out the door and say it's a damn movie Nicole...what are you doing about your own life?

That is one Sandra Bullock movie I will not ever watch again. It makes it look too easy.

Skip ahead to the end of May/June.

Life is distracting me from Nicole's problems. Medicaid caseworkers need this, that. Mom and I are in line for this, that. Everything is exploding around me. I am used to calm seas but life is a raging ocean suddenly.

At no time did I think once, "Nicole is dying." Not once. Mother's don't think their children die especially when the doctor knows everything.

The ~~Doctor~~ said Nicole had "baby cirrhosis", how dare he word it like that...say the word cirrhosis to an alcoholic. Don't say "baby cirrhosis". Don't mince words. I saw Nicole's face relax when "baby" prefaced cirrhosis. It gave her "more time" in her mind. "OOO, I can take my cirrhosis to the junior high school stage before I quit drinking", right?

She goes back to ER on June 3rd. They have been in the waiting room all day. I suggested she go to the nearby McDonald's or something and call 911, that way she'd get in quicker. "No, mom." She says "NO, MOM" to me more than anyone I swear.

Will she ever say "Yes, mom?" Just once? One time??? She is making me crazy... yes I know, let go...let it go...but how do you let go when you think in the back of your head she might die but in the front of your head you know she is not going to die, no way, no way, no way? Children never die. Not yours. Not your beloved, stubborn daughter.

She is finally admitted but three or four hours later she crashes and never regains consciousness.

I find out she has crashed when my son shows up at the apartment and tells me Mom, we have to fly to Texas now.

When we walked into ICU and I saw Nicole I knew. I simply knew. She opened her eyes for me once on the first day. Just once. And they scared me. Her beautiful blue eyes were so swollen and yellow with jaundice, but full of love. Then they closed....

And my beautiful, very much loved daughter died June 10, 2009 with her brother, grandmother and me by her side. When she exhaled that last soft breath I looked up at the ceiling hoping she could see me looking for her and all I saw were ceiling tiles looking back at me.

So what would I have done differently? Tune in for the next post, this one took a lot out of me.

CAC: Certified Addictions Counselor

2011-09-03T15:25:00.000-06:00

A year before my daughter died my husband ran off so I had to re-do my Vocational Rehabilitation plan. I was in the middle of a self-employment plan for a printing business but everything had changed. Since he was going to become my EX we shuffled my vocational goals.

I found the school paperwork yesterday.

At the time I was planning to go to school in Denver to become a Certified Addictions Counselor. I was very excited about this new avenue I was pursuing... I was ready to go! I could not wait to begin.

When I told Nicole about my school plans she said "Oh, you're one of those goodie goodie people who wants to save the world...." and right then and there I was done. That was it.

I wasn't going to become a Certified Addictions Counselor.

I had enough of alcohoholololololololololololololololololololololoholism.

Nevermind adding drug addiction, sex addiction, food addiction, huffing, puffing, blow, gambling, and whatever else there is to be addicted to the mixture from clients I had yet to meet.

I was sick of ADDICTION and the people who loved to be addicted to addicted stuff.

It was a tipping point type of comment you can say.

I said something like hahaha, no encouragement from you I see....and changed my vocational goal to working within the invitations field but as it turned out I ended up on Medicaid and they have serious income limits. It is okay because I would have been fired repeatedly had I gotten a job due to all the weird maladies I have.

Nicole has been gone 2 years, 2 months, 25 days...(look at all those two's) I wonder if it would have made any difference if I had gone to CAC School. It's a path I didn't go down. Nor did I go down the al-anon path. Nor the path of family confrontation.

People say blah, blah, blah (that's what I hear) it's not your fault (blah, blah, blah, are you still talking) she would not stop no matter what (blah, blah, blah, what did you say) I look around and see successful sober alcoholics so don't tell me nothing works. AA works. Al-anon works. For some people, it works.

It worked for my boyfriend. He's a sober alcoholic and he still calls himself an alcoholic even though he hasn't had a drink in over 21 years.

What I know is we didn't do the right thing by her, at all.

Especially me.

Dinner with friends

2011-09-02T15:14:00.003-06:00

"So how did you two meet", she asked? We were at Alex's friends house for dinner.

That was a question I had not been asked yet. I paused for a minute and plunged ahead. My stomach was churning and it wasn't due to what she was serving either. A rule I have now. If you ask me a question, be prepared for the answer. Don't ask questions if you might not like the answer.

Our "how we met" story is strange. Nicole is involved. Of course....

I said well our meeting was not a happy story like most people's - in fact it was very sad. (her fork went down on her plate - oh no, please keep eating)

I started to stumble over the word "funeral/wake" since Nicole did not have a funeral...or a technically a wake I guess. A wake by definition is "a watch over the body of a deceased person before burial, sometimes accompanied by festivity" which did not happen at all.

I do not recall any sort of festivity.

Back to dinner. I told her we met a week to the day of my daughter's wake and that Alex helped me through the first two years of hell but I don't really remember much of it. She handled it well and we talked more but no gooey tears were shed, thankfully. Then we went back to eating dinner. I don't remember what was said, really.

Alex knew Nicole died of alcoholism the minute I met him. I practically shoved her death certificate in his face. I didn't tell her that part though. I also told her without Alex I doubt I'd be sitting up straight in her chair. He saved me from myself. An alcoholic saved the mother of an alcoholic from going insane. He still works at it too.

We have no cute "ohhhh, we met when his car crashed into my car" kind of stories. We were robbed of that. He did bring me a hot pink gift bag with tissue paper to our first meeting....inside was a roll of magenta duct tape. Duct tape? In event I cussed too much, he could tape my mouth shut.... (seriously) It was a joke. I cracked a smile.

I remember being in serious shock. He texted me about an hour after we met to make sure I was okay. Then he emailed me...and a couple of days later asked if I would help him pull weeds. Pull....weeds.

It was just what I needed. I didn't want to talk. I wanted to pull weeds. All summer long, I pulled weeds. The rest of the time I sat blankly in front of FB and posted mindless crap. Now I have nothing to say on FB. Nothing at all.

I read, and leave. I want to know what everyone else is up to but I have nothing to say.

It reminds me of a paragraph I read yesterday - "Death of a child member becomes an important identifying piece of information about the family." I am forever the mother of a dead daughter as well as the mother of a son who is still alive. One exists only in a cruel, haunting memory, the other is thankfully a reality.

It's like salt and pepper. The sun and moon. Winnie the Pooh and Eeyore. If one is gone forever, the other is feels skinned alive.

I hate saying "my daughter passed away" instead of saying "my daughter died" because it makes it sound like I am polishing up the language to make people more comfortable with the idea - I can't do that, I'm sorry - I live with her death every moment and if you are my friend you will have to accept real words or not have me in your life. I don't have time to polish up words to make you comfortable.

I found by telling the truth about how we met it felt good - and since I handled it with no tears, no drama, just calm words she (and her husband) were able to do the same.

A blog change - I picked this design because it reminded me of Nicole. Click on Cute n Cool to find creative templates. A tip - revert your blog back to Minima to get the templates to work correctly. Since I have a lot of readers with MS (thus, vision problems) I kept mine simple. But wowzie, what a nice selection by a great designer!

Hang on, it's gonna be a bumpy ride...

2011-09-02T08:35:00.000-06:00

I'm changing my blog around. It might change every minute, or hour... be patient with me.

It's like trying on high heels when you have MS. You want the look but you can't do the walk but you keep looking anyway.

Off to find my bloggy shoes!

Peace Be With You: It'll Take Humor Anytime

2011-09-01T08:01:00.001-06:00

Peace Be With You: It'll Take Humor Anytime

How does Judy do it??? Turn one of my posts into a haiku?

Talent at work, an incredible woman.

Support Groups

2011-08-27T14:29:00.000-06:00

Eeny, meeny, miny, moe,

Catch the baby by the toe

If she hollers let her go

Eeny, meeny, miny, moe,

you are it!

Support groups are supposed to be helpful for those who need help. My email box is bomboarded with all kinds of "mailings" since they've helped me in some way or another. For example:

1.) MS Support for MS and their Caregivers
2.) Compassionate Friends
3.) Al-Anon
4.) TESSA (domestic violence)
5.) Colitis Foundation

If I spent my time going to support groups I'd have to go five days a week. It's a pick and choose kind of thing, I think.

I cross off #4 with ease. I try to donate clothes or toys when I can but they are quite a ways from me. I'm crossing off #1 for now. #5 can be done online since I have yet to have my colonoscopy. I'm in line. Imagine that, I'm in line. I've been in line for "an emergency colonoscopy since June. JUNE!

But you cannot force a doctor to accept Medicaid. You can't.

That leaves #2 and #3.

Which one would you recommend for me? And why? =)

Buying milk is a CHORE!

2011-08-25T16:03:00.000-06:00

Buying milk is no longer a simple thing.

There's coconut milk. Vanilla milk. Almond milk. Soy milk. Rice milk, Hemp milk. Oat milk. Chocolate milk. Lactose-free milk. Goat milk. 0% milk. 1% milk. 1 1/% milk. 2 % milk. Organic milk. And 100% generic milk.

I know I did not get them all listed.

Then you have sort through all the cartons and find the one with the latest date stamped on it. Fresh is better.

When you turn the corner there is all the bread. Oh no, I see whole wheat means something else now....

I am HAL. See me POSE.

2011-08-25T11:51:00.000-06:00

From 2001: A Space Odyssey

HAL : Just what do you think you're doing, Sherry?

This is my new grey hair. Thought I'd show you.

And... welcome to my HAL pose.

My son said "Were you biting your nails?" No, why?

A strange pose, he said via t/m. We both are notorious nail biters, especially since Nicole died. My long red nails have vanished into the night. We both struggle with this nasty habit. We know, we know, we know, we know...it's nasty.

"You look like you're about to kick some ass", he responded.

I do? I looked at the photo I sent him. Oops. He is right. I only noticed it wasn't blurry when I sent it.

In reality I was glaring at my other hand (the one holding the cell phone) for having a private earthquake I got this shot off. Decent means not blurry. Decent doesn't mean a great photo with a big smile when I'm playing air hockey with a cell phone with the camera light on. I did not notice my glare, only that it wasn't blurry.

Intentional tremors with cell phones can send unintentional messages if you don't look carefully before clicking "send".

HAL also said: I'm completely operational, and all my circuits are functioning perfectly but we know how the movie ends... right?

MS and HAL. Hmmm....I shall not compare further!

I touched part of Nicole today

2011-08-22T11:58:00.000-06:00

Mom moved back here in June. She has been giving me some of Nicole's things. One of the things she found was Nicole's brush.

Today - I saw there was a lot of hair on Nicole's brush. I used her comb to get every strand off and then I tied them together in a small neat bundle. I love her thick, long brown hair.

It hit me. I was touching a part of Nicole.

Hair is a funny thing. It's gross when it's clogging up the bathroom drain,on your tongue or in food. But if your child dies, it becomes a precious lock of love.

Her blonde hair from her first haircut from 1978 is sitting on my grandmother's suitcase next to my couch. I have the last strands from her hairbrush now.

The beginning and the ending.

I.AM.A.HYPOCRITE

2011-08-21T11:32:00.000-06:00

Hypocrite at work.

After posting about how we should tone down the rhetoric, temper the language we use, yadda-yadda I thought to myself...hum. What did you just say? Remember your Hershey's post rant?

I am a hypocrite. I'm calling myself out on my own behavior. I sincerely apologize...and will do better in the future. =(

We have to lead by example, not do as we say. I can't rant and rave on my own blog and turn around and complain about the commenters that are ranting and raving.

That is my hypocrisy at work. I could/should have made my point known by using different language.

From this point on I shall try to do better (not sure I'll succeed when it comes to Medicaid lol) when addressing any potential hot button topic.

Death reveals town's mean streak

2011-08-21T11:04:00.002-06:00

Death reveals town's mean streak

It is a very long article. Try to read all of it and digest it. A very sad, disturbing dirty political story over $94.

Ninety-four dollars.

I thought most people would read it and learn something. Maybe some compassion, maybe some intolerance for dirty poltics/talk if nothing else. A call to tone down the rhetoric, the language we use, the dirty tricks in elections maybe.

I mean something.

I always read comments so I clicked on them hoping eager to see what people had learned from this tragic story.

To my dismay, many of the commenters sounded like the people living in Mesquite, Nevada. No one had learned a single thing.

********************

Change of topic: Last night Alex and I watched a movie called Hereafter with Matt Damon. Alex liked it but said it was "a bit slow". I disliked it immensely. It ruffled feathers I didn't want ruffled. I can't explain it except to say it like that. Rabbit Hole with Nicole Kidman is acutely spot-on.

I guess that's me reviewing movies from the bereaved movie category.

Wildfire near home

2011-08-20T12:38:00.000-06:00

Wildfire near home.

On the way home yesterday a wildfire erupted not too far from where we live.

The traffic was horrrrrrrrrrible. We had just visited Mom. There was no reason for the traffic jam except everyone wanted to see the spreading fire. I shot that photo from my cell phone while Alex was driving. We were doing our fair share of rubbernecking.

I mean there was a fire right there, going up the mountain. And why? And so close to home. It wasn't something you saw "on the news". There it was, in your face.

What I know 1.) it's making me cough 2.) the wind is blowing gently 3.) no sign of rain. I can't see what is going on (too many trees lol) but we are not in the path of the fire at all. Wrong direction. It's more of a respiratory problem at this point.

When we got home I told Alex what he was to get out of the apartment "in case of fire". The dog and all of Nicole's stuff. The rest I don't care about.

Nicole's stuff, mandatory. And there is a lot of it. I point it all out to him. Jewelry over there, ashes there, photos are there, her brush is there, her sweater is in there, and on we go. Then I asked him what he had to have and he says "his computer tower and boat" and man is he easy to please or what?

Word Salads or the Demyelination of Me

The lightbar effect

"How are you", the Medicaid caseworker asks...

I hate Winnie the Pooh

Thank you Rhapsody

Stop talking about them, mom!!!

Youtubing with a dog

Happy Birthday !!!Andrew!!! and my new project

My first video

The thin line

MS means Multiple Screams

Tears in Heaven meets Billie Jean

Nicole visited me in a dream last night and said...

Alcoholic Outsider Artist: Parker Lanier

She's in the room

Andrew's birthday invitation

Do you ever want to run away?

Crying is drying

Christine or MS?

The box of tissue

Grief Franchises

Haley Wilson is missing

T/M Conversation with Son Part II: Atlas Shrugged

A t/m conversation with my son

Thanksgiving Day 2011

Atlas Shrugged at Rudolph on Christmas morning

Merry Christmas to my kiddos

'Tis the Season to Offend

Snow

My son

Joan Didion: Was her daughter an alcoholic???

How long does one go to a support group?

MS Support vs Grief Support

Worldwide Candle Lighting

I have to put a title here?

There is an upside to having stress

Compassionate Friends Worldwide Candlelight Service

The missing piece

The *wah-wah* post

I love these

Going blind on green beans

"Do you have any milk? I really like milk...."

Happy Thanksgiving!

Embezzling the store

Working with Nicole

Try walking a mile in legos

Grief Class #2

I want to occupy a...

O Christmas tree

"Roll your hair, be pretty for God"

The world of silence is the real world

Penn State and Deaf Schools

Our Rehab experience

Happy Birthday Nicole

Tomorrow is Nicole's Birthday

La da da, the camera came home from the Nikon Hospital

Wanna smile? Only takes 13 seconds

Diagnosis: IBD and a bad propofol joke

Happy Birthday Daddy!

Colonoscopy prep day....waiting is hell

My Bucket List

Back to the world of bloody addiction...

I have an eating disorder, I think

Blue Man Group - rave reviews!

I hope the Blue Man Group doesn't use coffee grinders

Got reprogrammed after grief class and heard the dog pee

"How I lost my sister for good"

Lotus 1 2 3 and cigarette candy didn't ruin my life

Nicole's Diaries

Gini the therapist

Ghosthunters II

Call ghosthunters or the men in the white coats

53 + 99 + Tea Party = America

Well, HA....what shall I put on my a**?

Serving others

Canned pumpkin decor

Would you vote for this man?

It's too hard

The things that go bump in the night

Anderson Cooper and Gloria Vanderbilt

The wah-wah post