Wednesday, July 26, 2017

CHAOS

I  don't have a roommate. Not yet anyway. My brother saved me, I will be forever grateful. My (almost) roommate's family saved her too.

Monday, when they moved my bed, I could not get to my desk. I got trapped on the opposite side of the room. I had a difficult time getting back to my side.

There were times when I could not catch my breath. I asked them to move my bed back to the place it had always been. They did. They pulled the curtain back all the way too. I could breathe again.

How can it be good to put two people in a room that was meant for just one person? How can it be healthy?  Does anyone care?

I will begin taking Lexapro to minimize my anxiety tomorrow.Roommate or not, this facility has become very stressful. I cannot handle living here without taking something to lessen my anxiety.There is just too much to deal with. People line the hallway. Tonight there is someone yelling. My floor has smelled of urine so strongly that I saw a visitor wearing a surgical mask.

My therapist tells me that I will get through this. That I will get to the other side. That I will be stronger. I am seeing her twice a week now. She tells me to keep working toward my goal of getting out of here. That goal is the one thing that gives me hope. If I have to live here for the rest of my life I will not survive. That statement is not meant to gain your pity. It's a fact.

Two state social workers have told me I am not sick. I do not need to be here. I have a good chance of getting out. I have to be approved. I pray a placement that can meet my needs will be found.

I have asked for help to the bathroom, but no one is coming. I had to call my brother twice before I was helped. It's really not the aide's fault. They have too many people to care for.

It is sad. This facility has put profit before people.  More residents have moved on my floor. Wings have been closed. Every day I am scared. I never know what will happen. I never know who will be caring for me.With so many to care for the care cannot possibly be as good as was before.  I hope living here is not my destiny

I have two meetings next week concerning transitioning out of here. Please send good vibes.

People, not profit.  People, not profit. People, not profit.







Saturday, July 22, 2017

CURTAIN'S UP

The room divider and privacy curtain have been put up. My room looks like the hospital room that my grandma was in when I was young. I  look at the curtain. I wonder how this can be happening.I cannot catch my breath. Anxiety.

Noise, confusion. Furniture being moved.  Residents in wheelchairs on both sides of the hallway. The med cart, the treatment cart are in the hallway too. "Excuse me, excuse me." May I get through, please?" I was just trying to get to the dining room. It took several minutes. I finally made it.

Two staff members have been extremely kind to me. I consider them m my friends. It is because of them that I  love sushi now. They make me laugh. They listen to me. The only way I have to repay them is through my writing. I am writing each of them a fairytale. I have created plots and characters in my head. My friends are characters in their fairy tales too.   I guess I live with my head in the sand. I have been told that I live in Lala.Land. Maybe I do. Living here is extremely stressful. Writing the fairy tales take me away from my reality. Away from this place. Lala Land is a nice place to live. At least for a while.

This facility is a business. They have put that fact ahead of our comfort and needs.It is sad. I get it. I am having issues and the person hasn't moved in yet.No one should have to live this way. Everyone has a right to their own space. We are being warehoused now. I wonder if the people who make decisions affecting this facility would like to live this way? 

I met with a social worker from the Department of Mental Health. I have a good chance of getting out of here. The social worker is checking into some options. She will write a plan. It will be a slow process. It won't be soon. There is a good chance I won't have to die here. That's what I will focus on. Not all the chaos going on around here. 

I am still scared. The only thing that I can count on is that nothing will be the same. I know there is a place for me in the community. I know that my future will be better than my past.   I have to be patient. My time will come. I won't give up.






















Wednesday, July 12, 2017

MY ROOM IS NOT MY CASTLE

"I may take a while. We don't know when, but it will happen."   That's how my social worker told me I would be getting a roommate.

I tried to explain to her issues that I have issues regarding the bathroom due to my CP and my spastiscity. She didn't want to listen. Her response was, "Having someone in the room with you will not affect you using the bathroom."  There is not even a door on the bathroom. There's just a curtain. .It was clear she didn't understand. She didn't get it. I told her she had to leave. I called my family.  Then I cried. I am embarrassed by my behavior. I wish she would have understood. I wish she would have listened.

People are always coming in and out of my room. The aides come in to talk to each other aides when I am on the toilet. They don't care. Even though I have had more things lost and stolen than I can count, but it was still my room. The place where I wrote. The place where I  blasted my music when I was frustrated.

I was told they tried to do this to me once before. My previous social worker got so upset that she walked out of the meeting. I was not aware of any of this. My brother knew I'd freak out. I was not given a roommate.

My facility has a new administrator.  I have a different social worker. This facility is a business. I it's run by the book. That's fine. Except for the fact inside of this facility are people whose lives are affected by the decisions other people make.  People who go home to their own space. People who have a bathroom with a door on it. People who have rights. No one is going to arbitrarily change their environment.

Being on Medicaid has made me feel like a second class citizen. My family pays for the things I need. People are being moved around in this facility. Every time that I see maintenance on my floor I wonder if they are going to install the divider with the curtain. The divider that will transform my room into a real hospital room. I won't be able to trick myself into believing that I live in an apartment anymore.

When I came here there was a resident on my floor named Bernice.I am almost certain that Bernice was on Medicaid. She was allowed to remain in a private room until she died. The staff here cared about her comfort. They cared about people, not profit.

When I came here, dietary would see that you got you what you asked for if it was a special item.  Everything is generic and cost-effective now.

I am not angry. I am tired. I am scared. I am working on getting out of here. I hope eventually to be back in the community. I will have my own room. If I have to share a bathroom I am sure it will have a door,

This facility specializes in assisting people who have MS. If I had MS and I was on Medicaid, I would not be getting a roommate.I have the wrong disability.

 Privacy will always be important to me. Medicaid has made privacy a privilege. It is a right that should be afforded to everyone. It should not be based on your ability to pay.
















Sunday, July 9, 2017

CELEBRATING A MILESTONE

Five years ago, on July 7, 2012, I wrote my first Confessions of a Disabled Diva blog post. I didn't remember the date until it showed up in my news feed on Facebook.  Five years, 190 posts. This blog began as an experiment. I wanted to see if I could write something other than children's stories. I wanted to see if I could write something that people would want to read.

My first post was about Lucie. I knew writing about her would come easily to me. Everyone knew how much she meant to me. She meant even more after my mom passed away.I wanted people to know just how special Lucie was.  I rolled up to my desk and began typing. When the post was finished, I'd written a post titled "For the Love of Lucie." https://confessionsofadisableddiva.blogspot.com/2012/07/for-love-of-lucie.html The post described in detail what a doggie diva Lucie was. Lucie and I went through some tough times together. her companionship was invaluable. I think of her every day.

I kept writing. I wrote about everything from struggles with caregivers to Cher. I wanted people to know what my life was like. I wanted people to know what it is like to be dependent on other people for almost everything. I always tried to end with a positive message. I always tried to give my readers something to think about.

I  have always been an advocate for people with disabilities. In 2014, when my life changed forever, I became an advocate for people in long-term care communities as well. I began blogging about how conditions were here.  How understaffing effects resident care. People need to know what life is like in a facility on a daily basis.  How will conditions ever improve if people aren't made aware of the issues residents face?Changes are happening at this facility. I hope the changes will be positives ones. I hope the changes improve the quality of life for those of us who live here.

I am trying to find an alternative living situation. Cerebral Palsy is a developmental disability. I must work with the Department od Mental Health. I have reactivated my case with them. I will be getting a case manager to assist me. Whatever happens, I will take my readers on the journey with me.

Writing this blog is therapeutic for me. If I write a post and publish it, I feel better because my voice is being heard.

Five years. 191 posts now. I hope my message of hope and perseverance has made a difference.

Thank you to those of you who have supported this blog for the past five years. Here's to five more.