3... 2... 1... 2023 IS DONE

In a matter of hours.

Let's say forty-eight.

Give or take.

At math, I'm not that great.

3...2...1... 2023 is done.

There were lots of changes in 2023.

My housemates moved. 

They now reside in long-term care

I miss them.

It's so not fair

3...2...1... 2023 is done.

2024 will bring. male housemates.

Oh boy.

Oh, joy.

Moving to a smaller room.

I wanted to stay in this house.

This is what I got.

I hope it works out

3...2...1... 2023 is done

2023 saw a change in me

I hope you can see/.

I try to be chill.

Calm if you will.

What does it matter anyway?

I do my best.

Forget the rest.

3...2...1...  2023 is done.

I saw the lights on Candy Cane Lane.

Saw the house that's not mine anymore.

Memories galore.

It made me sad.

Not mad.

Time marches on.

I've got to march with it.

3...2...1.. 2023 is done.

Some dreams you have to let fade.

No matter how much you want them to be saved.

3...2...1.. 2023 is done.

Cataracts, clean teen, and a physical

Thanks 2024.

I couldn't ask for more.

3...2...1.. 2023 is done.

Spread love.

Not hate.

Be kind.

Don't whine. 

Agree to disagree.

Please do that for me.

Keep Pushin' 

Surviving.

Thriving.

3...2...1... 2023 is done.

Thnks for reading nd suporting.

Let's knock 2024 out of the park,

Don't be a dork.

3...2...1,,, 2023 is done

.

FLY EAGLES FLY INTO CHIEFS KINGDOM

 The title of this post comprises the extent of my knowledge of football.

Wait. That's not entirely true.

I know Travis Kelce's position is a tight end and Jason Kelce is a center.

#87. #62.

Impressed yet?

Fly Eagles fly into Chiefs Kingdom.

The Chiefs brought home a win. 

They ruled in Super Bowl LV II.

]In November, it was the Eagles turn on Monday Night Football.

They swooped in for the win.

Sharing is caring.

Fly Eagles fly into Chiefs Kingdom.

.

Mama Kelce is cool.

I'd go to the NFL Hall of Fame just to take a pic of her shoes.

Win or lose she's there for her sons.

Because in her eyes they'll always be #1.

Fly Eagles fly into Chiefs Kingdom.

New Heights is their podcast.

It's #1 in sports.

Listen every Wednesday.

If you want to get their reports.

Fly Eagles fly into Chiefs Kindom.

From New News to No Dumb Question. Intern Brandon. Taylor Swift.

You'll get the scoop on it all.

They might even give Papa Kelce a call.

Fly Eagles fly into Chiefs Kingdom.

Kylie's podcast episode was the most listened to.

And anytime Jason's girls pop in.

It's a win-win.

Fly Eagles fly into Chiefs Kingdom.

A Fairytale in Philadelphia.

    A Philly Special Christmas Special on YouTube.

Is there nothing Jason and Travis can't do?

Fly Eagles fly into Chiefs Kingdom.

Positivity, laughter.

Supporting each other through wins and losses.

That's what they're about.

When the Eagles fly into Chiefs Kingdom.

It's a family reunion.

So, keep flying Eagles. 

Flying straight into Chiefs Kingdom.

I love my shirt

.

.

.

 

GRATITUDE IS AN ATTITUDE

I am grateful to the administration for allowing me to live in this house. I am grateful to my staff.  Thank you for providing my care. I am grateful to have been given another chance with this agency. I am grateful to those who continue to support and believe in me. I am grateful to be able to share my skill set by writing for the agency's newsletter.

Gratitude is an attitude.

 .

I am grateful for the freedom that I have. I shop  I bowl. I create. I advocate. I pray for the people who live in countries that are not as fortunate as I am. 

Gratitude is an attitude.

I  am grateful for this blog. This blog lets me share my thoughts with all of you. I hope that it helps raise awareness too.

Gratitude is an attitude.

I am grateful for all the holidays I got to spend with my family. I have awesome memories. I hope that someday we'll be able to celebrate together again. I am grateful that this  year I will be celebrating Thanksgiving with my agency family

Gratitude is an attitude.

I am grateful for my friends. They listen to me. My friends kick my butt when needed. My friends never fail to make me laugh.

Gratitude is an attitude.

My Maltease, Lucie passed away on November 23, 2014. She was my comfort during my mom's illness as well as after her death. I still miss Lucie. I am so grateful she was in my life.

Gratitude is an attitude. 

I am grateful to all of the countries that take the time to read my blog. When I read the stats I am amazed.

Gratitude is an attitude.

Make it your attitude.

Peace.

HOW LUCKY AM I?

I am very lucky to still be living in this house by myself. I could very easily be in respite care. I thank God that I am not. 

How lucky am I?

Missouri is an "at-will" state. That means if the administration here chose to they could kick me out. Hello, respite care. I received my notice in the spring. My housemates are gone. I am still here.

How lucky am I?

I toured a house that was totally not power-chair friendly. Wheelchair-accessible houses are hard to find. That day I realized people \like me belong in nursing homes. That statement pushed disability advocacy back one hundred years. It is the way I feel.

How Lucky am I?

I came here with a stick up my buttt. I thought I was better than the other clients, I was too cool for school.  The truth is I am like them. They are like me. They are pretty cool. The stick was removed with the help of behavior therapy and common sense. We went to the movies. We saw Barbie. My new friend, Etta rocked out to the music. The movie was fun. The best part for me was watching Etta have fun  That's what it's all about.

How lucky am I?

I have been going out. doing activities with other clients. Today at the office, I made a stress bottle, hung out, and had some chips.

I have been invited to a client's birthday party next week.

How lucky am I?

There are staff members here who do not want me to leave. One staff member told me she'd start a petition.

How lucky am I?

I failed here. It's my fault. No one else's. I am afraid to try another group home. I am just as afraid of being in a nursing home I don't want to spend the holidays in a new place. I pray I am allowed to stay here for them.

How lucky am I?

If 2024 is predicting an LTC community for me. I want my friends to remember me here, on the patio sipping a Margarita and eating a cupcake.

How lucky am I?

WHEN LIFE GIVES YOU LEMONS

Resist the urge to throw them at someone. 

You do not want to spend a night in jail.

I hear Robin Williams as Mrs. Doubtfire shouting, "It was a run-by fruiting."

You don't want that, do you?

When life gives you lemons

Put on your big girl parties.

Suck it up. 

Do what you gotta do to make it through the day.

 Move on.

When life gives you lemons.

No matter what.

Hold your head up.

Be grateful.

Not hateful.

Don't let anyone see your tears.

Don't let anyone know your fears.

When life gives you lemons.

Don't let the turkeys get you down.

I know that's old school

It applies.

Some things are out of your control.

When life gives you lemons.

You feel as though you are falling down Alice's rabbit hole.

The hole is bottomless

You just keep falling. 

Spiraling down, down, down into darkness

When life gives you lemons.

The lemons are hitting you so hard and fast.

You are afraid you will get a concussion.

Damn, those lemons.

 

You can do it.

You'll get through it.

The lemons will lose their sour taste.

Miraculously they will be sweet

That's what happens. 

When life gives you lemons.

 

THE FLIP SIDE

In my previous post, I discussed the positive aspects of living in a group home. I fought to get out of LTC. I went against my family. I would not listen to anyone. A group home was the answer to my prayers  I was sure of it.

I am not discounting anything I wrote in my previous post.  I enjoy living in a group home for all the reasons I discussed. 

Hindsight is 20/20.  If had known in 2018 what I know now I might have chosen to move to another nursing home when the activities and choice of meal options at the one I lived in were streamlined. I might have chosen a group home. I came here to live my life. There is always a stipulation or condition to everything I ask to do. They tell me I am an adult. I am my own person. Most of the time it does not feel that way,

I continue to enjoy writing for this agency's newsletter. I am grateful to have the opportunity.

 

 I am glad the staff can no longer take me to purchase my cocktails  All the rumors, finger-pointing, and blame will stop. If it was such an issue the policy should have remained I effect. Cocktails in a restaurant or with friends are more fun anyway.

I miss Happy Hour, the ice cream social, and pet therapy, (Dogs are not allowed in the house.) Ordering take-out with my tablemates and theme days. What I miss the most is talking to people.

Most of my resident friends have passed away. My staff friends have moved on. My old nursing home is under new management. It's not the same anymore 

I have the same feeling of apprehension and dread now that I did when I was told I was getting a roommate in the nursing home. The difference is all my staff friends stopped by on the day my roommate moved in. My therapist came by too. Everyone knew how upsetting getting a roommate was for me. Here, no one cares. It's not their problem. It's a business decision.

Reading this I am sure you are confused. I know I am. I do not know what would be the best option for me. I better decide quickly. August 1st is fast approaching. The only thing I know for certain is that I am scared.

I am disappointed in my case manager's lack of assistance. He put me on the list for an accessible group home but when it comes to researching and calling nursing homes that task has been left entirely up to me. It's embarrassing when contacts inquire about my case manager and tell me he should be making the inquiries for me. They want to know about my care plan. They want to talk to him not me. 

Today I am leaning toward going to a good Medicaid skilled nursing facility. Tomorrow I might lean the other way again. Waffling is my biggest problem.

When I talk about the things I deserve I am called an Elitist. I am better than no one. I want a good life and good care from staff who care.  I want the same for the ladies I have lived with for the past five years.

And if it's not too much to ask...

A patio, a Margarita, and good conversation. 

 

 

A PATIO, A MARGARITA, AND GOOD CONVERSATION

They are looking for a new place for me to live. There are lots of changes going into effect here. This is to become an all-male house. A man is moving in by August 1st even though my female housemate and I are still living here.  I  am scared because all the current staff appear to be leaving this house when the new housemate moves in. I hope this is not true.

My case manager told me there are no wheelchair-accessible houses available. I am on the list, but I may have to consider a nursing home. That's not what I want. I like getting my own vegan groceries. I like having my own room and toilet. 

I can no longer go to the grocery store with staff to purchase my weekly cocktail. My friends can bring them or I can go out to have one. Cocktails were never a part of the staff's duties. They were just being nice. The agency broke the rule for me. I will always appreciate that. Several months ago DMH said that I could no longer have alone time to go on unaccompanied walks around the neighborhood. Needless to say, I  have been bummed out. 

\ am 66 years old. People my age are enjoying their summer at the lake or by the ocean. People my age are enjoying their retirement.  I am scared. I am tired. I am healthy. We all know life can change in an instant]  At my age I should be able to live my life the way I choose to. It should not matter that I am disabled.

It does not take much to make me happy.  All I want is a pato when I can have a Margarita. I want to have a good conversation too.

I have had great times with my friends on the patio here. We shared Margaritas. We laughed until we could not breathe. I am grateful. I hope I will continue having fun times like these.

 

Birthday on the Patio 2019

 

Celebrating on the Patio in 2022

Celebrating on the Patio in 2023

WE FIGHT

According to the CDC, 27 percent of the US population has some kind of disability. That translates to one in four people.  Most people will experience being disabled at some point, either temporarily or permanently. Disability pride and improving accessibility should matter to everyone. 

Everyday.

 We fight to be seen.

We fight to be heard.

We fight to be accepted.

Not ignored.

We fight.

We fight for better healthcare.

We fight for better educational opportunities 

We fight for more employment opportunities.

Reasonable accommodations.

Attendant care.

We fight.

We fight for accessibility.

Accessible architecture.

No more being denied entrance.

Reliable transportation

We fight.

We fight discrimination.

We fight stereotypes.

We fight to prove we are worthy 

We fight to prove we are good enough.

We fight to prove we are intelligent.

We fight. 

We hold rallies.

We speak to  our legislators 

We beg them not to forget about us.

Open your hearts.

Open your minds.

Change the laws.

We fight.

Do not institutionalize us.

We live with the knowledge that we are one step away.

Do not shut us out.

The Ugly Laws are no more.

We fight.

We have God-given gifts

Let us show how we can contribute.

Make the world a better place.

We fight.

We fight.

And we will continue.

Until the world knows.

That we are equal.

That we belong. 

Be proud of who you are. You can show your disability pride by helping to raise awareness. Remember, however, that your disability is not who you are. It does not define you. It just is. Celebrate not only your disability. Celebrate your gifts and talents as well.

The ADA was passed on July 26, 1990.  We have come far. But not far enough.

I CHOOSE TO BE HAPPY

 

I  can't change the past. 

Mistakes? 

I owned mine.

Apologized. 

I  want to start anew.

I choose to be happy.

Stay or go?
I don't know

Talk is swirling around.

I try not to listen.

Rumors abound.

Like Scarlett...

I will think about that tomorrow. 

Today...

I choose to be happy.

Come on. 

Let's have some fun.  You can rest another day. 

It's gorgeous out.

I don't want to sit in the house

Please take me to the store. on a ride, anywhere.

Please don't rush. 

We might miss something awesome.
I can't change the staff.
Just how I react.
I choose to be happy.


The photo in this post is from community week 2023.
The week ended with a picnic.
Ribs, chicken, and burgers.
Community, clients, togetherness
I did the prize walk.
Imagine that.
I choose to be happy.

I see myself sitting outside on the patio.

Eating sushi and drinking a Margarita.

I am a Golden Girl on Wheels.

I choose to be happy.

.

 

IT'S MY PARTY AND I'LL CRY IF I WANT TO

 

"It would be better for everyone if you weren't here."   

Geez, tell me how you really feel. These sweet, encouraging words were said to me by a staff member. A great start to my Sunday. A great way to kick off my birthday week.

I have been working hard at changing how I respond and react to the staff in behavior therapy.  I keep a gratitude journal. I try to write something in it that's positive even when I don't feel grateful or positive. I hung out at the office working on the agency's newsletter. I was happy. (Can you believe it?) I began to think that I could make it here after all.

B.C. (Before Covid) clients would celebrate their birthdays by inviting other agency houses to celebrate their special day with them. I have lived here for almost five years and while I know some of the SCs, I have met very few of the clients.  I was determined that my party was going to change that. It was going to be awesome. Who doesn't like big cupcakes and mint chocolate chip ice cream?  The email invitation I created was funny and my Bitmoji was the cutest. I hit send.

"You knew nobody was going come to your party," a staff member told me the day before. "You don"t participate. They don't know you. (I"'m trying. I hoped hosting a party would change that.) I received zero replies. I asked my support staff to come. "I ain't coming to your party.  I ain't working that day. I don't care. Don't ask me about your party again." That was one staff member's response.  The good news is I saved a lot of money.  My party would have been epic. It's their loss.

When I was thirteen I had a slumber party for my birthday. We ate junk and stayed up giggling listening to our playlist of 45s. I looked so cool in my blue and yellow lounging pajamas with big flowers on them. We were in sleeping bags on our family room floor.  None of us got any sleep, but we had a lot of fun,

For my sixtieth birthday, my brother bought everyone at my table in the nursing home Chinese food, cupcakes, and saki. It was fun celebrating with friends.  

In other years in the nursing home, my staff friends. Chris and Julie would have a sushi birthday lunch with me.

This year no matter what my birthday will be one to remember. 

I wrote this post because  I was bummed that nobody here gave me a chance. I am trying to be accepted here. I did not write it to beg for a party. If I am begging for anything it is acceptance.

"It would be better for everyone if you weren't here."    

Well, I am here dammit. Deal with it. I rock.

Sing it, Lesley. Sing it loud. Sing it proud.

 

ENDINGS

Endings

.Life...Death.

.Childhood...adulthood

Jobs...We retire

Marriages...Divorce.

Formal education...Graduation.

Our favorite book...Sadness

TV series we love...Tears

A delicious meal...Satiation

A house...Moving

All of us experience endings in our lives. You can probably add more to my list. The most difficult one for me, besides losing someone to death, is the ending of a friendship. When I become friends with someone from the moment we meet I am wondering why this person is interested in talking to me. They're cool. I'm not. They had life experiences that I will never have. So, I tell myself to enjoy it while it lasts. Because as much as we pledge to be BFFs forever, from the moment I meet someone new, I  brace myself for the ending that I know will inevitably come.   I have to.  otherwise, I'd be a mess for the rest of my life.

Whenever I am happy. Whenever feel a sense of acceptance and belonging something is wrong. I sit and silently wait for the other shoe to drop. and ruin my mood and my day. When it does I smile to myself and say, "I told you so."  I get so close. I never truly belong.

Friends move on. I am left wondering what happened.  It has made me a stronger person. I am grateful. I want to thank the friends I have lost touch with.  They let me into their lives for a little while. I learned from each friendship. We had fun and made memories that I cherish.  Lives move in different directions. Forever is a myth.

The good news is that endings mean new beginnings. 

MEDICAL ACCESSIBILITY FOR ALL

Hoyer Lift  Manufactured by Drive Medical

Physicians, dentists, ophthalmologists, podiatrists, and any other medical professionals. Listen up. Architects too. My message is for you. 

Medical accessibility for all

Physicians, If you want us up on your exam table,. have a Hoyer Lift in your. office to make our transfers safe and stable. 

Medical accessibility for all.

Do not expect our caregivers, relatives, or friends to lift us onto the table. It's not their job. Their job is to offer us support. Not lift us. It's your job to have the necessary provisions in place. Hospitals also need to have Hoyer Lifts. One on every patient floor. 

Medical accessibility for all.

Permit me to list what needs to be fixed.

Your exam rooms are small. with narrow doorways.

Our manual/powerchairs are big. 

We need room to move around to get in the right spot.

Make sure all of the machines used for the running of various tests are accessible. 

Medical accessibility for all.

Some of us have lifts that were used when we got them.

Some lifts being used are so old that no one will repair them.

Yet insurance won't approve a new lift.

The same for a hospital bed.

No matter how old, if  it still works,

It's good enough.

Medical accessibility for all.

Good medical care.

Good equipment.

We deserve it.

We demand it.

Do not cut costs at our expense.

Medical accessibility for all.

 

I CLOSE MY DOOR

 "All you do is talk s**t.

Shut up 

You need us 

We don't need you.."

I close my door.

I forgot that a staff member had done a certain task.

I ask her to go get someone to do the task.

To show her how.

"You treat me like a kid," she tells me.

Not my intention.

I was trying to help.

A voice yells at me from the kitchen. 

"Please be quiet and stop yelling," I say.

(I realize my voice is raised too I am no better. Behavior therapy begins soon. .)

"You can't tell me to be quiet.

I'll talk when I want to talk, " they respond.

I close my door.

"You are bipolar.

No one has time to deal with your multiple personalities.

That's your problem.

You tell everything.

You need a psych eval."

(I have requested one.)

I close my door.

"If you want to sit in your room and mope all day and be childish.

I don't care.

I just have to do my job"

I close my door.

(I  was creating a cover for my next children's story,)

Creativity.

Solitude.

Peace. 

Respect

I close my door.

An issue-free day. A blame-free day.

So I can keep this great room.

That's why I close my door.

FORGET THEM

Choose to have people in your life who want you around.

Those who don't...

Forget them.

Surround yourself with people who have positive vibes.

If they don't...

Forget them.

Choose people who lift you up.

Not those who tear you down.

If they do...

Forget them.

Be happy.

Not sad

It's a choice.

I'm trying.

Those who aren't...

Forget them.

People should give a damn.

Connect. Care.

Many don't...

Forget them.

People make mistakes.

Forgiveness is the key.

People who've lost their key...

Forget them.

The words people say should make you feel better.

Not worse.

If they do...

Forget them.

Your family, your tribe.

Their love keeps you alive.

All the rest...

Forget them. 

Don't try to please other people.

It doesn't work.

People do not have to talk to you.

People don't have to  like you,

Sucks...

Forget them.

You are a good person.

You are worth it.

If people don't think so...

Forget them.

This journey called life is bumpy.

Rocks will get stuck in the wheels of your power chair.

The road will smooth soon.

Keep going.

You'll make it

Negative people?

Forget them.

If people don't cheer for you.

Be your own cheerleader.

It's their loss...

Forget them. 

"Surround yourself with people who stimulate, inspire, and bring you happiness." Oprah  Winfrey

 

THAT'S THEIR POWER

Words ...

Healing

Painful

Joyful

Destructive

Rebirth

Love

Support

Loss 

Compassion

Hate

Divide'

Unite

Empower

Empathy

Uplift

Heart

That's their power.

Use it wisely.

Labels...

Stigma

Follow

Crush

Brand 

Stuck

Can't

Won't

Shouldn't

Never

Negative

Weak

Powerless

Impossible

That's their power.

Use it wisely.

I'M STILL STANDING

Walking in front of someone. 

While they supported me.

I started really little 

I stopped when I was in college.

I got too heavy for the person supporting me.

I am still standing.

A little girl in long leg braces.

Walking between the back of a couch.

And the row of windows behind it.

Holding on to the back of the couch.

Holding on to the windowsills.

A little speed demon.

Turned around at the end.

Started again.

I'm still standing.

Parallel bars replaced the couch when I got older. 

I'd fall sometimes. 

I wore a helmet.

Very fashionable. (Not!)

I'm still standing

In school, PT put me inside a walker.

And closed the back.

I was free to walk for hours.

Or, until my legs gave out.

I'm still standing.

I could stand and pivot to use the bathroom.

When I sprained my knees.

No more pivots for me.

I'm still standing.

 The parallel bars?

In PT. the adult me asked to try.

My legs would not move.

It felt like they'd been super-glued.

My knees were fried.

I'm still standing.

.

Enter the Sara lift.

When I am on the lift I can bear weight on my legs

I like the feeling of standing as tall as I can.

Without my lift, my legs are like jello.

I worked hard in PT to learn how I could stand safely.

I'm still standing

Do you know what it's like to poop in a bedpan?
Beyond gross.

That's what I would have to do with option #2.  

I am still standing.

I was approved.

Yay.

Made my day

I'm still standing.

My feet and knees swell sometimes.

I can tell when  it's going to rain,

But I'm happy.

I'm still standing.

. 

THAT'S WHAT I REMEMBER

Valentine boxes outside the classroom doors.

Adorned with red tissue paper and red and pink hearts.

That's what  I remember.

The colorful boxes were filled with dime-store valentines. 

With names scribbled in a childish script on the back of each card.

That's what I remember.

Counting the number of greetings I received. 

Those disgusting candy hearts with silly sayings.  

That's what I remember.

 

A heart-shaped box of chocolates from my dad. 

A card signed, "All my love, Daddy."

A surprise after my Tuesday Girl Scout meeting.

That's what I remember

.

In grad school, I gave out heart-shaped cookies I made.

They were a hit.

That's what I remember.

Cards from and dinners with my mom.

In 2001, Valentine's Day was two days before I had major surgery, 

Mom and I went out to dinner. 

That's what I remember.

Mom gave me an artificial rose(it looked so real.) in a silver vase. 

I  had my last meal of solid food

The next day it would be all liquids for me.

That's what I remember.

Flowers from my brothers

Candy too.

That's what a remember.

My secret admirer was no secret at all.

I knew who they were.

The things my friends did.

They made Valentine's Day in the facility fun.

That's what I remember.

The cookie /cupcake fairy.

Who visits since I moved here.

That's what I remember.

I have no stories of romantic candlelit dinners.

No blue boxes from Tiffany's

Valentine's Day memories of family and friends. 

That's what I will always remember.

FYI. I debated whether or not to write this post.

Fearing its simplicity would seem juvenile to some readers.

The first rule is to write what you know. I did.