Thursday, August 17, 2017

A WEIGHTY ISSUE

My mother took care of me until she was eighty-seven years old. The reason she was able to do that was that I kept my weight down.  We had sweets and chips in the house. I just watched how often I ate them.

When I arrived at this facility I weighed approximately ninety--seven pounds. Everyone kept telling me to eat. I was underweight. It took a while until I was able to get above one hundred pounds. I was proud of being able to keep my weight down.
I am ashamed to admit that I looked down on other residents here because of the foods they chose.to eat. Didn't they know that all those carbs and sweets they were consuming would cause them to gain weight Didn't they know that if they gained weight it would be more difficult for the aides to assist them?  Didn;t they care about their health? I couldn't understand.

I understand now why residents eat the way they do. I understand because I am eating more too, specifically, desserts. Sweets make me feel better. Eating them helps me cope with stress better. I still try to eat healthily.  I eat mainly salad and fruit. The only difference is that I don't deny myself dessert anymore. If I want something sweet, I eat it. My weight (so far) is still okay.

One of the side effects of the anti-anxiety medication I am taking is weight gain. Now, I am stressing about medication that is supposed to help alleviate stress. It is a vicious cycle!

I know I cannot eat this way forever. I will just enjoy it while I can. I hope someday I will be living somewhere that is less stressful.

Until then...

Does anyone have any cake?





Friday, August 11, 2017

MAYBE SOMEDAY

Ableism is defined as discriminating against a person with a disability in favor of an able-bodied person Inspiration Porn is defined as being inspired by someone just because they have a disability. When I was young these terms did not exist.  The first time I heard them I was confused. I did not understand what the terms meant.

Growing up I never thought about being proud of my disability. I was disabled. I had CP. I wasn't proud of it. I wasn't ashamed of it. It was part of me. It wasn't who I was. I knew that, inside, I was just like everyone else. The difficult part was getting everyone around me to see me that way.

Before I entered The George Warren Brown School of Social Work my mother was told, by The Dean of Admissions, that the school did not want me. .GWB had to accept me because I met the qualifications for admission..My first advisor  told me that he "would rather see me fail than help me."  I didn't make a big deal of it.  I got rid of that advisor. I was determined to prove the school wrong. I did.

I have been told twice, by The Office of Vocational Rehabilitation, that I am unemployable. Again, I am determined to prove that wrong.

I guess I view things differently than the majority of disabled people. The ADA has opened many doors for people with disabilities.   However, a part of me thinks it is sad that people with disabilities won't have the experiences I did in seeking to get an education and find employment. Those experiences  made me a stronger person,

I have been patted on the head, both literally and figuratively, more times than I can count. I have been spoken to condescendingly and ignored. It is not right, but when you are disabled, (sometimes). you have to deal with it.

Ableism and Inspiration Porn have always existed. The only difference today is now they have names and definitions. I don't think that I will ever truly be thought of as equal by society.  There will always be people who will view me as different. In a  perfect world that wouldn't be the case. The world isn't perfect. I am different. I need services and assistance that others don't. That's not a bad thing. That's just how it is.

I try to live the best life I can. I keep pushing forward toward my goals. I continue to advocate and raise awareness through my writing.  

Maybe someday the world will be perfect. Maybe someday we won't need terms like Ableism and Inspiration Porn.  Maybe someday everyone will look at me and not see my wheelchair. Maybe someday everyone will really see me.  Maybe someday.











  












Wednesday, August 9, 2017

KEEPING MY EYE ON THE PRIZE

Being positive is a choice. I can choose to focus on all the things going on around me.that stress me out. Or, I can choose to focus on my goal of transitioning out of here and back into the community. I choose the latter.

I had a care plan meeting with the staff here. My case manager was also present. She asked about my needs.  She asked if the staff thought I would be able to live in community-based housing. All agreed that, with the proper supports in place, I would.

I had to answer eight pages of questions. This was an assessment of my skills and abilities. A few of the  questions were "What is bleach used for?"  "How would I find a job?"  I was asked to calculate the correct change, in my head, after a purchase had been made. (The one thing I could not do.) Except for calculating change, I think I did well.

My case manager returned two days later. She asked more in-depth questions. Gathering information for my plan. My plan must be submitted and approved. She hopes it will be approved before she retires at the end of September. Another case manager will take my case at that time. My profile will be sent out to various agencies/.Hopefully, a spot in community housing will be found for me.

She asked what the one thing was that I would like to do if I am assimilated back into the community. My answer was. ""I know I won't have much money, but  I'd like to go out to dinner,"  I  told her I wanted to have some type of part-time so I would have a little extra money. She asked about my hopes and dreams. My hope is to be released from this facility. My dream is to be a paid freelance writer. All this really means is that I I just want to feel like myself again. I haven't for a very long time.

I have to keep my eye on the prize. I have to stay positive. I have to keep moving forward. I have to believe.




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.