The lightbar effect

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...

...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? 

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

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

"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

 (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 

1. 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.
2. 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.
3. 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.
4. I am a Michael Pollan fan but I can't afford to be one. Read here. Michael Pollan
5. 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)
6. 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.
7. 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!!!

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

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

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

Happy Birthday Andrew! 

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

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

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

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

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

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

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...

....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

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

...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

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?

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

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?

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

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

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

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

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

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

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

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

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

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

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

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???

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?

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

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

Remembering Nicole

11.7.72   to   6.10.09

and all children who have died

I have to put a title here?

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

 

Compassionate Friends Worldwide Candlelight Service

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

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

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:

1. I don't recognize my life *wah, wah*.
2. 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.
3. 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*
4. 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....*
5. I don't know how to go on without Nicole, she made everything silly, *wah, wah* *WAAAHHHHHHHHHHHHHHHH*
6. The apartment is two rooms, I have cabin fever oh pooey I'm sick anyway *wah, wah, wah, wah....wah, wah -wah*.
7. I need a place to go or is that a home or vacation, *wah, wah*.
8. I want my old life back, I miss Nicole, I miss Quill my Golden *wah, wah*.
9. My son is depressed too *wah, wah*.
10. I am tired of tiptoeing around, *wah, wah*.
11. 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*....
12. 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

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

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...."

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!

May your turkey feathers turn into peakcock feathers

(unless you prefer turkey)

Embezzling the store

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!"