A SIMPLE BLOOD TEST

 

It's part of my annual physical. A blood test. I am not afraid of needles. As a child, I never cried when I'd get a shot. I always got a toy or a ring from the box of trinkets my doctor had in his office for being so brave.

Blood draws, however, are another matter entirely. I have small veins, my arms don't extend very far, and I don't drink enough water. If I drink a lot of water I  go to the bathroom. Running me back and forth to the toilet tires my caregivers. 

When I was younger my doctor only ordered a blood test every two years. I am older now so that bi-annual blood test won't cut it anymore. My doctor wants my labs updated every year.

It was time for my 2024 physical. I fasted and drank water  I was ready for that blood to draw. "I've got this," I told myself.

The first part of my physical went great. It was time for my blood test. I went to the waiting room. A few minutes passed before the tech called my name. The tech examined my tiny veins. (My veins are so small a butterfly needle is used. The same type of needle is used to draw blood from  infants.)  The first stick was in my hand. Nothing. The next stick was in the crook of my arm.  Nothing again. Until the tech removed the needle from my arm. I was bleeding but it was too late. First two tries. I hope you are keeping track.

I went to a lab to have my blood drawn. I'd had success with this lab in the past. I was confident the techs there would get the job done. I was wrong. Three of the lab's best techs each tried two times to draw my blood. Each one of them failed. I was dehydrated the three of them said. I learned that I have to drink a lot of water several days before my blood is drawn. A tech will come to the house next month for my blood draw. I will drink a ton of water beforehand.

It freaks me out when several techs examine my veins and decide who is the best to do the task. Eight attempts in a week. I thanked them for trying.

When you have a disability there are times when tests that should be a breeze are not. We take nothing for granted.

MY CHRISTMAS TREE

I  am a traditionalist. Christmas trees are green. Not pink, not white, and not black. 

Jaywood needed a new tree last year. I was living there by myself. I begged for a Grinch tree. (I begged for  a Grinchette tree, I was not going to quibble.) Lachandria told me that the tree I'd chosen on Amazon was too expensive. Off we went to Walmart. I was not a happy camper.

When we got to the aisle overflowing with Christmas decorations guess what color tree Lachandria chose? Deep breath. Ready?  A WHITE TREE!!! 

"Really?" I asked her.
"Aw come on, Joanne" was her reply.
"I am not participating," I told her firmly.
"What color tree do you have at home?" I asked.
"Green," LaChandria said.
(Defeated.sigh.)
"I rest my case," I told her.

The theme was ice cream.  Glittery ice cream bars and ice cream cones. Tiny white lights. Purple and silver balls to match the ice cream sparkled and, lastly silver garland.  In the darkened living room my tree was beautiful. 

I told Lachandria how magical the tree was every day. 
Thank you, Lachandria. For my magical tree. For the memories.










 

PLEASE, THANK YOU, AND GOOD NIGHT

PLEASE

I know how important it is to show appreciation to my staff. Think of all the intimate, gross tasks they must do for me. I could not do it for a stranger. I always make sure to say thank you to them. I always begin a sentence with, the word, please. (I could be better.)  I get frustrated. I know my staff does too. I  keep reporting any issues to a minimum. (I try.) 

THANK YOU

I am grateful to have a place to live. I could be in respite care or even out on the street. I'd be lying if I said it has not been a difficult transition. There were plans for me to join advocacy groups to meet new people. I declined.  I write for the newsletter and. I teach part of the new hires class so I have money. The government cut my monthly stipend in half because I live alone. I have to work or I will have no money for the things that bring me joy. I am grateful for my job. If I work one day I am tired the next day. It is not much but I do the best I can.

I have lived in this house for almost two months.  The staff that I was used to have other clients. St. Charles is far. One staff member has been with me the entire time. I am grateful for them. They have been the one constant in my sea of change.

.

GOOD NIGHT

I don't want much. A couple of streaming platforms and I am happy. I watch reruns of Bob Hearts Abishola. That show makes me happy. It's funny, and romantic and is a good example of how people from different countries and cultures can live, love, and grow together. How great a world if this was our reality, not a sitcom. Is something wrong with me because I am watching all five seasons for the fourth time? Don't answer that! 

I would love it if some of my former staff would come to take care of me for a day. I miss them. I miss my family too. Group home life has always been difficult for me. I start thinking of the nursing home and my family more during the holidays. I am on Medicaid which means a long waitlist. 

Thank you to my staff who are preparing a Thanksgiving feast for me.

I will end this post with what I tell my staff each night as the end of their shift nears.

"Thank you for everything. Get home safely. See you tomorrow."

 

CLIENT BURNOUT

 I slept a lot last week.

No energy. 

I coined a new term.

Client burnout.

 New staff.

.Pulling and pushing.

Wait your turn.

I know you have a lot to learn.

Client burnout.

My new SC returned for me.

She worked with the Ladies of Jaywood.

She came back to oversee my staff.

I am grateful for her care.

I am grateful that she cares.

Client Burnout.

Lachandria. Tiffany, Dawn, Miss Val.

You are the best at what you do.

Where are you?

 I know it's far.

It's far for me too.

But I miss you.

Your care, conversation, and smiles.

It's been a while.

Client burnout.

Overstressed, burnt out.

What's the cure?

I go for walks.

I explore.

I can't do much more.

Watch Everybody Loves Raymond.

To feel close to my mom.

Client burnout.

i used to enjoy going on van rides.

Looking at houses.

Imagining...

Making up stories.

But the State of Missouri declared.

Watch your mileage 

No more aimless van rides.

Clients must have a destination.

Client burnout.

People have been going on car rides since the automobile was invented.

I can't.

That's the rule.

The State of Missouri sucks.

Client burnout.

Don't forget me

I am still here.

Even though I am not near.

Client burnout. 

GOD'S PEP TALK (I'M PROUD OF YOU)

 

You have moved into a new house, in a new county.

You feel like everything familiar has been taken away from you. 

You needed a place to live. 

 You are grateful this agency provides you with one,

There was nothing you could do. 

You are surviving. 

You are pushing through.

I'm proud of you.

Your new house is small. Your chair bumps the walls. Chips of white paint fall like droplets of snow.

All of your things fit in your new room. Two exceptions. Your bookcase and fridge have found new homes in your house.  You know they are not far. It's crowded. You feel safe 

with things surrounding you.

I'm proud of you.

New staff to train.

Such a pain.

But you do it again and again.

Near misses. I am here. Never fear.

Start over.

You're tired

But....

You must.

So, you do.

I'm proud of you.

You write. You teach a class.

It kicks your ass.

You need the money.

It's not funny.

I'm proud of you.

Joining groups is not for you.

There is only one thing you want to do.

Meet with state legislators.

Travel to Jefferson City. 

To see Missouri legislators in action.

On your own. You don't need a rally

I'm proud of you.

You know your interests are not the norm.

People tease and make fun. 

Don't turn and run. They are the losers.

Keep finding things and people that bring you joy.

Keep being you.

Whatever gets you through.

I'm proud of you.

It's hard to be grateful sometimes.

I know that you are doing your best to show your gratitude.

I see your successes.

I see your struggles.

I'm proud of you.

 

I THINK I CAN

 

Tomorrow's the day.

I am moving away.

New house.

New chapter.

I think I can.

New challenges.

New staff.

How 'bout that?

I think I can.

I am afraid.

But...

I have a supportive team.

Who says I'll do great.

I can't wait!

I think I can.

6 plus years in this house.

That's a lot.

Jackie, Kathy, and Joanne.

The Ladies at Jaywood.

I think I can.

Dawn and Lachandria.

Our support coordinators.

The best of the best.

Nothing lasts forever,

Except for my memories.

I think I can.

On to Greenwich

In St. Chuck.

Wish me luck.

I think I can.

Things don't always work out the way I want.

I will put on my big girl panties.

And...

Suck it up.

I think I can.

Think positive.

Say a prayer.

I think I can.

My move has been pushed back another week. September 24. They are still working in the house.

DID YOU KNOW?

 

Did you know that the state of Missouri is being investigated by the Department of Justice for delaying people's applications to go onto Medicaid?  Missouri has been deemed the worst state in the country for this 

Medicaid serves low-income individuals and families living at the poverty level. Delaying someone's application for 45 days denies access to doctors, medications, surgeries, and more. 

Why delay applications?  Does Missouri treat people awaiting Medicaid this way because it can? This is one example of how Missouri has failed people in need.  No one wants to be on Medicaid. It's a necessity. Not a choice. 

Feds to scrutinize Missouri’s worst-in-the-nation Medicaid application delays • Missouri Independent

Did you know there is no set ratio of staff to residents in nursing homes in Missouri? This means one CNA  could be responsible for an entire hall of residents. Let's say the hall they are working on comprises 40 residents. That's a lot of resident ts for one CNA. They cannot possibly provide the best care to each resident. The staff can't get to each resident promptly. (Imagine being left on a bedpan so long that you fall asleep waiting for someone to come.( That happened to me.)

Not having a set staff ratio to residents is unfair to both sides. The residents suffer because they are not given the quality of care they deserve. The nursing staff is overworked. This leads to burnout and to a nursing home being staffed by agency staff who know nothing about the residents they have been assigned to care for. Mistakes (while unintentional) in a resident's care or medications could be made. Residents of nursing homes need caring staff as well as consistency in staffing. Residents need staff they can trust to provide them the best care.

Did you know this? The cruelest and most egregious thing Missouri has done.

Imagine being dumped in a nursing home because you have a mental illness. You are denied the ability to choose, to go out, or to see your friends.  Missouri and your guardian made the choice for you. You are scared and alone. you've lost hope. You have not been aware of supportive housing, and other programs that would allow you to be a part of a community instead of a drain on society.

You are locked away and forgotten. You can't decide what you want to eat or what clothes you wear. Imagine. I can't even.

What about working with the person's court-appointed guardian and Missouri so that an individual feels a part of the process. There are decision-making support programs. Make this and all other support programs available to them.

Missouri what is wrong with you?  I am embarrassed and ashamed to live in this state. This is how my state legislators treat Missouri's most vulnerable citizens? Just because we/they are on Medicaid.

More accessible housing

Set staffing ratios in nursing homes

Offer support services to those who have a mental illness. Institutionalizing them serves no positive purpose, It is dehumanizing and degrading.

There are people in the St. Louis area who are advocating for accessible exam tables in doctor's offices as well as accessible testing equipment such as in radiology. I can personally attest to the fact that accessible medical tests are needed.

I'm still fired up. I am all in I heard a new term on social media. An impacter is a positive source of change. I was meant to do this. I want to open legislator's minds in my little corner of the world.

To the State of Missouri, I ask the same question. Would you want your loved one to be treated this way?

Do better.