Wednesday, November 22, 2017

I AM GRATEFUL

My family was unable to attend the facility's Thanksgiving dinner this year. I was not sure if I wanted to go.  I hate going to an event alone.I weighed the pros and cons.

If I attended the dinner I would be served faster. Getting a room tray takes forever. I decided to go.  I sat with a woman who lives on my floor. She was alone too. We talked. We enjoyed the delicious food. Both of us were grateful to be together.

I have been approved for placement in community-based housing. The difficult part is behind me. It will take a few months, but eventually, I  will leave here. A meeting will take place later this month to begin my transition process.  I am grateful for a second chance.  I know that a better life is waiting for me.  On Thanksgiving Day 2018,  I will give thanks for my new home

I am grateful to have the opportunity to spend this Thanksgiving with my family. It has been hard for me to be with my family on holidays since my mom and Lucie died. I always felt there was something missing.I would get emotional. I would get lost in memories. I have wonderful memories of my mom at Thanksgiving. I cherish them.

The memory that stands out the most in my mind is my mom's last Thanksgiving. Mom always made a carrot casserole and a spinach casserole as her contribution to Thanksgiving dinner. Her last Thanksgiving she was unable to make the casseroles. Our caregiver had to make them. Mom was never one to give up. I can still see her sitting in her wheelchair instructing our caregiver on how to prepare the dishes. I am grateful for her example.  My sister-in-law is carrying on the casserole tradition. She does a great job.

This Thanksgiving is a new beginning for me.  I am filled with hope. I  will not become lost in the past.  I  am looking toward the future. I am ready to make some new memories.

Be grateful. Make memories. Happy Thanksgiving.














Wednesday, November 8, 2017

LIFE'S TOO SHORT...

Mass shootings, terrorist attacks, people fighting over different political and religious beliefs, natural disasters and thinking that building a wall to keep people out of this country will make the United States a better and safer nation. These are the reasons I do not watch the news. It's not because I do not care.   It's because I care too much. 

A man I knew was hit by a bus while on vacation in Florida. He was fine one minute. Gone the next. It really did happen that quickly.

I have no idea what the future hold for me. Only God knows. I could fall out of bed, break my hip and die from surgical complications. I do not mean to be morbid. All the silly little disagreements, all that I have had with people will mean nothing when my life is over. Will who was right really have mattered.?  All the wasted time nursing hurt feelings and grudges is a waste of energy.

"I don't have talk to you. You're not my mama.' I just want to do my job and home.' Those were comments made to me by two different aides. Where is the kindness?  Where was the empathy? Where was the compassion?  They were just counting the hours until their shift was over.  I 
had to wait to go to bed until my aide finished her French fries to go to bed.  Nurses admit to forgetting about me. I am a resident here. Where is the compassion? My requests take two minutes to fulfill. Would they like to be forgotten if they were in my place?  Life is too short for me not to get the best care possible.

Leona is a traveling nurse from Springfield. She is under contract here for thirteen weeks. She has been on my floor twice.  One night, after she had fulfilled my request, Leona noticed my swollen ankles. She asked if  I would let to put lotion on my feet and legs and massage them. She said it would help with the swelling and improve my circulation. I am not a fan of lotion, but I agreed. While she was massaging my legs and feet she talked to me. Leona went the extra mile. Leona cared.  In a facility where I am often forgotten by nurses, I appreciated her concern and the care that she gave me. I hope that Leona will be on my floor again soon. 

A tragedy is in the news every week. A sobering reminder of how fragile life is.  We are entering the holiday season. The season of giving thanks. The season of peace on earth. The season of hope. The season of miracles. The season of forgiveness.

Be kind. Show compassion.  Show empathy. Help others. Life's too short not to. 












Sunday, November 5, 2017

DEJA VU


 Thirty dollars was taken from my room last week. I was saving it to get sushi with friends. (California rolls, seaweed salad, and Philidelphia rolls.) It wasn't even my money.it was my family's money.

"It's happening again."  "Why don't they care enough about residents to install video cameras?" "I feel violated. I wondered who'd been in my room going through my things. "I don't feel safe here." These were all the thoughts running through my head.

I  have had a lot of things disappear in the last three years. I was always reimbursed for missing items. The new administration does not reimburse for lost or stolen. items. I was reprimanded for keeping money in my room. If this is my home I should be able to keep anything I choose in my room.I should feel safe and secure. If items are lost or stolen the administration should take responsibility and replace them. I have lost count of the number of things that have gone missing. It should not be my family's responsibility to replace them. Video monitoring systems are needed on the halls.

Please keep other residents out of my room. .A dirty bed pad was in my room recently. The pad was not there when I left for dinner Staff comes in my room when I am at meals. I have been asking for three years, "Please respect my things."' I am said that thefts are happening here again.. I don't like to leave my room. I do not know what or who  I might find there when  I return.  If I close my door I have to wait for someone to open it for me. The staff is not always available

Living here is a lot like high school. There are cliques. I have been called names, laughed at, gossiped about. Everyone knows my business.

I have tried to fit in here. I had tried to find my place here. I have tried making friends. I found a table in the dining room that I really liked. Three women who are around my age sat at the table. Good conversation. I was happy. I was finally accepted/ Until...

One of the women at the table is friends with a male resident. The man took my spot at the table one evening. I told him that was my spot. I had been sitting there for several weeks. The gentleman informed me that there has never been assigned seating, (not true) that he could sit wherever he wanted. He told me to stop whining.(What is it with people making comments about my voice?) The staff told me to get to my spot early the next night before. he could kick me out. I asked the woman if she minded me sitting at the table. I foolishly thought she'd say no. She told me that she'd wanted her male friend to sit there. He'd be leaving in a few weeks. (He has been leaving for six months) .Agan, I left. I told them I would never sit with them again..

I sit with two men. The one man's wife occasionally eats with us too. She has Alzheimer's. I mean no disrespect to anyone. I would rather eat by myself.

I  am finished with trying to make friends here. I am thankful for my two friends on staff.  They listen, support me and make me laugh. My life would much harder here without them.

This all happened in the same week.  I had a strong feeling of deja vu. I kept thinking, '"This is where I came in."' I urge the administrator to consider installing a  video monitoring system. It would also be nice if residents who are rude to others were reprimanded. They are the ones who should be asked to move. Not rewarded by getting their way.  (I know that's not going to happen.) I  hope this facility will change for the better soon.









Tuesday, October 31, 2017

THE GHOSTS OF HALLOWEEN'S PAST

Halloween is probably my least favorite day. Except for the candy of course.( I love candy corn.) With my sensitive startle response, I am sure that you can guess the reason why.
It wasn;t all bad. I  have some good Halloween memories too.

 One of my earliest Halloween memories is my brother holding me in a standing position so my mom could take a picture of me in my clown costume. (What was my mom thinking? I  was afraid of clowns.)/ I was three or four years old. I remember looking at the grainy color photo. I was smiling. I was happy. I was ready to go get some candy!

In the sixties, my parents did not have to worry about having my treats X-rayed because they may have been tampered with. People gave apples and oranges.along with candy. My grandparents lived next door to us.They gave me fruit, candy, and fifty cents. I;d hit the jackpot! I never got a treat until I had told a joke or a riddle. I went trick-or-treating until I was ten years old. When I was eleven I was in the hospital on Halloween. By the time I was twelve it was too difficult to get my wheelchair up and down steps.

My dime store costume was hot. It was hard to breathe with that plastic character mask covering my face.The rubber band around my head held my mask in place. It would hurt after a while, but it was worth it.I don't remember any particular costume. I am sure I was Cinderella one year because I loved Cinderella.

My school had a Halloween parade  We'd march around the building in our costumes. We'd end up in the auditorium for a Halloween program. When I was in high school, my mom began volunteering at my school. she worked in the office. When you are fifteen or sixteen it is bad enough that your mom works at your school, but it's ten times worse when you see your mother marching in the Halloween parade dressed as a Martian, complete with a green face and silver antennae!. I was mortified. I stayed in my classroom the entire time.

I look back on that Halloween now and It makes me smile. If you knew my mom you would know that she would never dress up as a Martian or anything else, of her own volition. How the principal and secretary got her to agree to it, I never knew. It took courage for my mom to dress up. I am proud of her.

I don't have any scary or exciting memories. Well, there was that time at summer camp when they celebrated Halloween in July. I felt an eyeball in the haunted house. At least that's what they told me it was. I was blindfolded. I found out the slimy squishy eyeball was really a grape in oatmeal. That's not scary. That's gross!

HAPPY HALLOWEEN.





Sunday, October 29, 2017

ONE CHIP AT AT TIME

I have of mental picture of my heart. It's encased in a block of ice. Protected.  Every time someone says something mean or hurtful to me, every time someone makes me feel that I am not good enough, a piece of the ice that is protecting my heart chips away. It's like an ice sculpture being carved.The ice chips go flying. I am 60. It has been a lot of years. Soon all the ice that is protecting my heart will be gone. My heart will be exposed. Vulnerable. Unprotected from. the rude and hurtful comments people make.

The kids in high school dropped heavy books to see me jump. They laughed. at me. That's okay. They were kids. They did not know any better. Adults do. I've had comments made about everything from my teeth (I live in a facility so obviously, I must wear dentures.), to my voice, ("You should learn to speak clearer.") Adults have called me names. When the staff sees my call light on, but no one helps me, when the staff hears me calling for help, no one comes, I wet my bed. A piece of the ice chips away. Why am I not important?  What have I done? Why is it okay for me to have an accident? My aide accused me of falling over on purpose when she sat me on side of my bed. A piece of the ice chipped away.when she accused me.She does not understand about my lack of balance. I wish the staff here would learn about CP.

I should be tougher. Shrug the hurtful comments off. That's difficult to do. My tears begin to flow. I visualize the ice that is protecting my heart chipping away.

I realized something. None of this is my fault. I am fine just the way I am. It;s okay to emotional. It's healthy. I empathize with and have compassion for other people. The people that make hurtful comments do it to make themselves feel better. They do it so they can be in control. It's okay to be a dreamer. Being a dreamer helps me in my writing.

The comments still hurt. I know they are not my fault. I  am becoming emotionally stronger every day. Soon I will be able to shrug off the hurtful comments.  The ice around my heart will melt. My heart won't need it anymore. My heart will be able to protect and defend itself on its own.

























Sunday, October 22, 2017

WHERE'S THE SOUP?

I love soup! My mom made the best split pea soup. It was so thick that you could almost eat it with a fork. She spent the day after Thanksgiving making turkey soup. Mom didn't make canned tomato soup with water she made it with milk. I thought this was something that my mom had invented. I have since learned that other people made tomato soup this way too.

The only soup I really won't eat is canned chicken noodle.soup. Growing up, when I had an upset stomach, mom would heat up a can of chicken noodle soup for me. I would eat the soup and drink white soda with it. I am not a fan white soda either. Just thinking about a can of chicken soup and white soda brings to mind bad memories. One morning they accidentally served Sprite to me at breakfast instead of water and.well, I  think I  will save that story for a future blog post

I loved to eat soup. I  had difficulty picking up the bowl.  Mom solved my problem. She bought a soup cup for me. I  could grasp the cup's handle and easily finish my soup.

I enjoy the soup here. Southwestern Tortilla and Clam Chowder are my favorites. I always ask for my soup in a cup, a coffee cup. It has a handle on it making it easy to finish my soup. Several other residents have their soup in a coffee cup too.

There are new coffee cups and bowls in the dining room now. There are even water carafes on every table. There are new soup cups too. That is if you can call them soup cups. They are pretty, white, matching the new coffee cups and bowls perfectly. There is, however, one problem. They are too small. The new soup cups remind me of dining in a Chinese Resturant. You know, the small, dainty cups they serve your egg-drop soup in?  There is nothing wrong with serving soup in small cups.  However, there is a time and a place for everything. When I have soup here,, I want a  real cup of soup.With the new soup, cups I  am finished in four spoonfuls. The first time I saw them I  just looked at them for a second. Surely,. there must be some mistake. I wanted to ask "Where's the soup?' I didn't,  but I wanted to. They still have some of the old coffee mugs. (What a relief!!) If  I remember when I order, I ask for soup in a black.mug.

I  appreciate the changes the new dietary manager is making. We have had new entrees like Pasta Con Broccoli and Shrimp Fettucini. They were delicious. I know that change is good. I  have one request. Please don't get rid of the black coffee mugs. I don't want to have to start asking '"Where's the soup?"












Friday, October 13, 2017

HARVEY


When I moved to this facility I was a mess. Not only was I  forced to leave my home, I left my Maltese, Lucie, too.  She had congestive heart failure.My neighbor took care of her for me. I missed Lucie so much. Every time a small dog visited the facility I would want to pet the dog, but then something about the dog would remind me of Lucie and. I would burst into tears.

 I met Harvey and his dog mom, Jane,.through the gentleman who lived across the hall from me. Randy knew that I loved dogs. He suggested that Jane bring Harvey to visit me.It did not take long for Harvey and me to have a regular date every Monday. Harvey's visits were the only thing that I  looked forward to here.

Harvey was a Shih Tzu. He was all black fur. with big dark eyes.  I must admit Harvey was somewhat aloof when we met  He let me pet him while Jane held him. Sometimes he'd sit on my lap. Those first few months It was difficult to get him to make eye contact with me when I talked to him. Harvey wasn't big on conversation. He loved coming here. He wanted to his job. His job was to bring joy and comfort to all of the residents Harvey did his job extremely well. Everyone here loved him.

Harvey warmed up to me putting his paw on my arm. Then he gave that famous kiss on the nose that I blogged about. That was especially meaningful to me because Lucie used to give me nose kisses too.

Jane and I would talk while Harvey settled down and took a nap on my lap or put his chin on the armrest of my chair. Every visit, Harvey made me feel as like I had a dog again. I didn't miss Lucie quite as much

Life got in the way. Jane and Harvey stopped coming. Jane and I had become friends on Facebook I kept up with Harvey through Jane's   posts.  I'd send little messages to Harvey via Jane's Facebook page. Jane told me that when she said my name Harvey would start barking.

Harvey passed away two days ago. I want to thank Jane for sharing Harvey with me  That was the best gift she could have given to me.

When Jane met Harvey he was living in a horse stall. He went to her. He never left her side. Harvey chose Jane to be his family. He couldn't have chosen a better person.

I'll Miss Harvey. He was one of a kind.

Rest in Peace Harvey. I love you. If you see Lucie, say Hi. She acts like a doggie diva, but she's really a sweetheart.








Sunday, October 8, 2017

I SEE THE LIGHT

October 15th marks the three year anniversary (I'm not sure that is the right word. It is not a day that I celebrate.)  of the day my life changed forever. I moved to this facility.

People told me living here would completely different from the life I'd known for 57 years. I didn't realize how different. Nothing could have prepared me. I wasn't given a handbook when I arrived with a chapter. titled  Adjusting to life in a nursing home in 5 easy steps. Adjusting? Embracing? There was no way. When I thought about this being the place where I would spend the rest of my life. I got very depressed.

I spent my first months trying to figure out how I ended up here. Who was the anonymous individual who reported me to the State of Missouri? Why now? It had been four years since my mom died. If someone felt that I was in unsafe living conditions why didn't they report me right away?   Did someone dislike me intensely enough to turn my life upside down?  These questions went round and round in my head.

The first time I investigated my options for getting out of here I blew it. I let my emotions get the best of me. I was embarrassed.  I was afraid to contact the state again. It would be over two years until I did.

"Shit happens. You move on. You do the best you can." That was the response of the first state social worker I met with. when I told her the good, the bad and ugly of the last seven years of my life. She was very encouraging. I am not sick. I need assistance with activities of daily living.

There were meetings, assessments, and a plan was written outlining the care that I need. A nurse came to assess me. She asked what I enjoyed doing. I told her blogging, writing and being on social media. The nurse wanted to know what I liked to do before I moved to a facility. It was difficult to remember all of the things that I.  did before coming here. I told her I liked bookstores and going out to eat. The nurse was hopeful. I pray it won't be long until I am approved.

I have has been in a dark tunnel for the past three years. I am beginning to see a way out. I see the-the light at end of the tunnel. All I have to do is follow it.



Saturday, October 7, 2017

X MARKS THE SPOT

I have never been able to write my name very well. It took me forever to learn how to print. I  taught myself to write my name so that I could sign things for myself. I did not want anyone signing documents on my behalf. If anyone did sign a document for me, it was with my permission. They signed my name and wrote their initials after the signature to indicate that they had signed for me. It takes a few minutes for me to sign my name. If there is a limited amount of time it's faster to have someone sign for me.

I used to print and write my name all the time. In recent years, typing everything on my laptop, I have not had the opportunity to sign my name very much. I am not sure if it is due to my age or a lack of practice, but my ability to sign my name has gotten worse. It is difficult for me to put enough pressure on the pen in order to write. Felt tip pens and markers are easier,.but they are not always available.

.My power chair has finally been repaired. It looks like new. It took about an hour, When the repairman was finished there was a form to be signed confirming that he had done the repairs. Without asking me,, my aide immediately assumed that I couldn't sign the form myself. She told the repairman to have the nurse sign for me. I was angry.

"How can you sign your name when you need help with everything else?" was her question. She assumed that I was unable to sign because I need assistance with my personal care. She did not even ask.

I signed the form. It doesn't matter if my signature did not look the best. I signed the form myself. That's all that matters/ If I were only able to write an X,  it would be my.X. No one else's.

By not asking if I could sign the form my aide took control of the situation away from me. Things.happen here that are out my control. Please allow me to have as much control as I can. Never make decisions for me.

Never assume. Try to put yourself in my place.I am sure that you want to have control of your life. You wouldn't want anyone to make decisions for you.

The issue is not whether or not I can sign my name. It is about respect. It is about allowing me to be as independent as I can. It's about allowing me to be my own person.







.

Friday, October 6, 2017

MOCKINGBIRD

Well, it finally happened,, I have changed tables in the dining room. You are probably getting bored reading about my dining room dilemma. Something happened recently that is important to me. Something that deserved . to be written about. 

The gentleman at my table cursed at me. His reason? I asked him to wait his turn. Most of the time, the servers bring his order to him right away. They are aware of how impatient he is. 

On this particular day, he had his food. A server was taking my order.I ordered soup. He interrupted me while I was giving my order. He wanted soup too.  I asked him to wait his turn. I told him that he had food. I told him that someone would get his soup in a few minutes.  "Go to Hell," was his reply.

I am used to him cursing me. It was what he did next that shocked. me. He mocked my voice. I tried to talk to him. " Blah, blah, blah, ' he kept repeating. His tone was meant to represent my voice./ His tongue was sticking out.  I was hurt and self-conscious. My self-esteem hit rock bottom. I thought that we were adults. How could a grown man have been so disrespectful?

I get nervous when I talk. I become self-conscious of my voice.  Words get stuck. It is embarrassing.

I hate to use the phone. I am more comfortable sending an email or texting. I do not text very well. I try. The first time that I heard my voice on tape I could not believe it was me. .My voice has a nasal tone. If I  am tired it can be whiney too. When  I saw my LTYM video  I told my friends that I should never open my mouth again.

Hearing the gentleman mock me made me feel that I wasn't good enough. That there was something wrong with me. .I know that I am good enough. There is nothing wrong with me. I am fine the way I am.

Today is World CP Day. A day to show support for those of us living with Cerebral Palsy. Many people with CP cannot speak. They must rely on communication devices to speak for them. Today and every day I am grateful for my voice. It is a part of me. Nasal quality and all.  I know how lucky I am.

My voice. It's unique. So am I. I think I'll keep it.










Thursday, October 5, 2017

WITH THIS RING...

When I was little I dreamed of getting married in a beautiful gown with lots of beads and sparkle. I loved princesses. I still do.

When Sonny and Cher sang I Got You Babe each week, with Sonny holding Chastity, they were the ideal family to me.  I would tell myself that someday, I would have a family of my own. No one told me that I couldn't turn my dream into a reality/ No one told me I could either.

In 1975, my high school held its first prom. When my date and I walked in the teachers were surprised. "Oh look, Joanne has a date," they said.Their reaction made me feel even more self-conscious than I already did.  Part of me wondered why they were surprised. Didn't girls bring dates to their prom?  Did they think that I was too much of a nerd to get a date?

When I was a student at Meramec there was a young man in a wheelchair who would follow me around. I guess he wanted to talk me, but he did not know how to begin a conversation. It got so annoying that I would find ways to avoid him. I was accused of being a snob. I was disabled. I was in a power chair. Those were the only things we had in common. Not enough to build a relationship on. A friend thought we'd be perfect for each other. The fact that we had nothing else in common did not matter. People with disabilities should only date other people with disabilities. I got the message. (There are also people who think that all people with disabilities know each other. We don't.)

In the70's there were no books written showing young women, with Cerebral Palsy, dating and getting married. There are many today. I read them because I want to know what it's like to be mainstreamed. .My high school was so different from a regular high school. Compared to a regular high school, mine was like attending school on another planet.  My school was much like this facility. A community unto itself. I am pleased to read books today where a young woman with my disability is encouraged to have a life just like her non-disabled peers. In the 60's, one of the few books available as a book titled  Karen. The book was written by her mother. Karen had Cerebral Palsy. Her mother fought to have Karen attended a regular school in an era when mainstreaming was virtually unheard of. The book was a big topic of discussion. among all of my friends.

It was very difficult to watch my friend with  CP  marry and have children. I did not really want to attend her wedding. I knew that it would be extremely difficult for me. I cried, but not for the reasons you might expect. Yes, I was happy for my friend. I also wondered if it would ever happen for me.

In 2001 I had a hysterectomy. I knew I would never have children,.Myhysterectomy made it so final. I mourned for what I had lost. I mourned for what I would never have.

People always see my disability first. That's to be expected. When they learn about my accomplishments they seem surprised. I had the same hopes and dreams as other girls my age. My mother never said it, but deep down,  I know she thought getting married was an unachievable dream for me.

 New aides always ask If I have children. I tell them that I was focused on having a career. I  was too busy to think about getting married and having a family.

If the ADA and mainstreaming had existed when I was growing up my life might have been completely different. I will never know.

I am a woman who just happens to have Cerebral Palsy.























Monday, September 18, 2017

SO, I WROTE A BLOG POST

Some weekends are best spent playing Word Tornado. I thought it was okay to playWord Tornado all weekend because it's like Scrabble. I am still using my brain, but I don't get a headache.  I get a headache, sometimes when I am trying to write blog posts or essays. I thought about blogging this past weekend, but I was like Scarlett O'Hara. I told myself "I'll think about that tomorrow."

I wrote (and deleted) a post titled  What's it like? I asked readers questions such as What's like to be truly independent? What's it to not have to be dependent on other people to assist with your personal care? What's it like to walk?  

I  asked these questions because I wanted my able-bodied readers to stop and think.To focus for a minute on all the things they automatically without giving them a second thought.  I have thought about true independence. I do wonder what it is like to be able to care for yourself.  I am happy and proud of who I am. If I didn't have CP,  I would be a completely different person. I still wonder though.  Especially since moving to a facility. It seems all I do I wait for the staff to help me.

I never want my readers to feel sorry for me. I am in an extremely stressful and difficult living environment. I am handling the best way I can.I  am proud of the personal growth I have achieved. Maybe that's  why this happened to me. I needed to change. I needed to learn how to better interact with my caregivers. If I am given a second chance I want to succeed.

I want my blog posts to make my readers stop and think. I want.to give my readers an idea of what my life is living in a facility. I write about negative issues hoping for a positive change. I am grateful for your interest and support.

 I believe there will be a positive end to this chapter of my life. My new life is just around the corner. It's only a matter of time. 

  

Wednesday, September 13, 2017

WAITING FOR THE OTHER SHOE TO DROP

Maintenance brought a second bed into my room. They moved my things around. When they installed an overhead light,  for a second bed, I was in the lobby having ice cream. I came back to my to find a framed poster had been moved to a different spot on the wall. Both times someone came into my room when I was not there. My things were moved without my knowledge or permission. I got angry. I am not proud of my behavior. I am embarrassed. Put yourself in my place. I bet you would have gotten angry too.

I have been assured by this facility's assistant director, that they have no plans to move anyone in here at the present time. The bed should have moved into my room when the curtain was installed. If and when they do plan to move someone in my room  I will be given notice. She apologized saying that maintenance should not have come into my room without my knowledge. The only people I want to handle my things are my family.

My greatest fear is waking up one morning and finding out someone is moving in here. I sincerely hope that does not happen.

I have tremendous anxiety. I am taking an anti anxiety medication, I hope by the time they want to bring someone in my room that I will be on my way to getting out of here.

Each day something happens to remind me how little control I have here. Anyone can come into my room at any time. If they are an employee of this facility there is nothing I can do about it.Residents who are confused have come into my and sat on my bed. I know they cannot help it but it's still unnerving.

My desk is my personal space. I have asked that the aides not put anything on it. Someone put their cup of coffee on my desk. My desk now has coffee rings on it. Someone's coffees also ruined a framed direct message that an actor from a telenovela sent me for my birthday. I don't know what happened.  The message is now unreadable. The aides talk on the cell phones while they are helping me. I  had an aide ask to watch something on my TV while she was helping me. There is a lack of respect for me and my property by some of the aides here.

When I came here the facility understood my issues. I was told I would never have a roommate. That was two administrators ago. I had a different social too. Now, I never know what might happen.

I am waiting...Waiting for the other shoe to drop.









Tuesday, September 12, 2017

ON MY OWN

In my last post, I told you that I would know by September 5th if I had been approved for placement in community-based housing.. I spoke with my case manager yesterday. She is still working my plan. Hopefully, she will submit it soon.

My case manager has spoken with my social worker regarding a sit and stand lift. I hope that is a sign that things are moving in a positive direction.

My family has helped me since the death of my mother in 2010. I want to take this opportunity to thank them for all they have done and continue to do for me while I live in long-term care. .I could not make it in this facility without them. They have never denied me anything. From grocery shopping to allowing me access to their Netflix account. I appreciate it all. I never take anything they do for me for granted. I love them all very much.

My family deserves to have their lives back. The past seven and a half years have been extremely difficult for them. I ask for their forgiveness.  If I am released from this facility I will be on my own  I will learn to pay my own bills. In order to be truly independent, the only person I can rely on is myself. I know my family wants the best for me. I know that they are hoping a better living situation will be found for me. I know that they just want me to be safe.

The government will not pay for a phone for me until I am released. I can even get a better power chair if I am released.  As long as I live here the government does not think that I deserve anything.

I want to thank the social workers for supporting me on this journey. Your interest, support, encouragement, and belief in me means more than I can say. 

This is a scary and exciting time for me. I won't know the outcome for several weeks. I continue to wait, hope and pray. Thank you, everyone, for your interest, love, and support.









Tuesday, September 5, 2017

STUCK IN THE MIDDLE WITH YOU

I have been stuck in elevators for a few minutes because I was unable to reach the buttons. I have been stranded, unable to get to the first floor of a building, because the elevator broke down.
I never thought I would get stuck in a shower chair,

My shower days are Monday and Thursday. My regular aide was off for Labor Day.I pushed my call button because I needed to go to the bathroom. My aide came into my room to tell me why she could not help me.  She turned off my light. I informed her that it was my shower day.  My aide told me she was busy. She would get to me as soon as she could. I was made to wait forty-five minutes. I wet the bed. Someone from the Activites Department heard me calling for help. She tried to get someone. for me. No one came. I was wet and cold. I smelled. Yes, the streak had ended. I had such hope. It lasted for just two days.

I was given my shower. I was being dried off. I am a small person. All the shower chairs are designed for someone much larger than I am  I have no balance. Because the chairs are so large if my aide does not support me. I will fall over. I informed my aide that I was falling over. She told me that I wasn't. I was sitting on one side of the chair. Part of the hole in the seat was exposed. In a split second my leg went into the hole, I was leaning sideways in the chair. My aide tried to pull me over.  Mythigh was stuck.She couldn't free me. It took three nurses. They used conditioner to make my thigh slippery so that they could free my leg. I was very scared.I kept begging for them not to let me fall.  I didn't know what was going to happen. I was naked. I had visions of the maintenance men coming in and having to cut the chair. in order to free me. The incident would not have happened if my aide had listened to me I know when I am about to lose my balance. I appreciate all of the nurses who worked so hard to free me.  

Several weeks ago I was dropped while using a stand-up lift  A loop, on the sling, that attaches to the lift,  popped off. It was not secure. Thankfully, I was not that far off of the ground. I was not hurt. I was stuck on the floor until a nurse came and checked me out. 

I have been stuck in the bathroom, attached to a lift without my call light, more times than I can count. I ask the aides not to leave me. Many times they will leave anyway. I am trapped until someone comes.I have been stuck on a bedpan for almost an hour. If I report any aides they refuse to help me.I only hurt myself. My family tries to adocate for me. Lately, their calls have gone unanswered.

I pray everday that conditions improve for me. There are a few aides who like and repect me. They know other aides treat me unfairly. I want to thank them for the care and respect they give me. 

I am not a bad person. I am not out to get anyone. It is not my intention to make trouble for this facilityy I want to have my needs met.  I want to be treated with the dignity and repect.I deserve.

.













Saturday, September 2, 2017

3 DAYS AND COUNTING

September 5th, if things stay on schedule,  I will find out whether or not I have been approved for community-based housing.

I am both excited and scared. I am excited because I will be able to roll out of this facility. I never believed I belonged here. If I am approved that means The State of Missouri does not think that I belong here either. That will be extremely gratifying to me.

If I am approved I will have to manage on my own. I hope the state will assist in moving my things. I will also need to learn to live on very little income. That is what scares the most. I have to make this work. If it doesn't, I will end up back in a facility with any chance of getting out lost to me forever.

I know living in community-based housing will be better than living in a facility. Instead of having to share aides with thirty-nine other people the maximum number of people I will have to share an aide with is four. I am sure that I will not have to worry about missing my transportation if I  want to go out. I will not have to worry about wetting the bed.

I will not have to worry that I will have a male aide My case manager has documented my preference.

I am concerned about how everything will come together. The main thing I am concerned about is not having Wi-Fi. If I lost the ability to write and access the internet I would not know what to do with myself.

I hope that I have lots of visitors. I hope that my family has time to come visit me too.

Living in a facility has been the most difficult experience of my life. I have also learned a lot from the experience. I have learned to be more patient. I have learned that arguing will not get me anywhere. It makes people not want to help me. It gave me a negative reputation here. I am grateful for the lessons I have learned

I try not to think about how I will feel If I am not approved for placement.As I said in a previous post, If I am forced to have a roommate I will not survive.

Thank you, family, and friends on Facebook and Twitter. I would also like to thank the staff here who are rooting for me. Your support and/encouragement mean more than I can say.

 Please continue to send good vibes. Please continue to pray for me. 3 days and counting...

Stay tuned.


















Thursday, August 31, 2017

RISE AND SHINE

Yesterday and today I did not have an accident. I woke up. I pushed my call light button. Someone came

I didn't have to begin calling ' Can someone help me, please? I don't want to have an accident. I am about to wet the bed." I didn't hear a nurse getting morning meds ready outside my room. I did not have to wonder why she did not ask someone to help me. Or, why she did not help me herself. I pushed my call light. Someone came to assist me.

I missed breakfast once because an aide left me in bed on my shower day. She returned after half an hour. By the time I got my shower They were cleaning up in the dining room by the time I got there. The staff got me my cereal, yogurt, and raisins. I ate breakfast. They cleaned up around me. Today was my shower day. I pushed my call light button. Two people came. They helped me to the bathroom. My aide got me in the shower. I was up, dressed and ready to begin my day. I had plenty of time before breakfast started.

Being helped the past two mornings so I didn't have an accident is a HUGE deal to me. My aides, the past two mornings, have been kind and understanding. They did not just walk past my door.  They did not come into my room, turn off my call light and tell why they could not help me. They did not make me beg for help.

There are good people here.There are people who care. I want to thank them for helping me. I hope they know what a difference they made in my day.

I am always writing about what's wrong with this facility. .I just thought it was time that  I wrote a post about what's right with this facility







Tuesday, August 29, 2017

I CAN'T LIVE WITHOUT IT

I have tried to stop writing this blog three times. Last week I told you that I was discontinuing writing this blog again.. I meant to keep my word. I really did. I can't because I am a blogger and a writer..That is who I am/Blogging/writing are a part of me.  I can not change the negativity in my posts. My posts are my truth. Another resident may see things in an entirely different way. I can only speak for myself.

I am going to write at least one positive statement in my blog posts beginning with this one. I am allowed to wet my bed every morning except when one aide is here. No aide comes in my room except to turn off my light. They tell me that I have to wait. I have told my social worker, the assistant administrator as well as the director of nursing. All of whom are very concerned. While the issue has not been resolved as yet, I believe in them.They assure me that they are working on it. I take people at their word.  I know the issue will be resolved soon. 

 I stand behind everything I write. I welcome the opportunity to speak with anyone connected with this facility to create an open dialogue. An open dialogue, I believe, will create a positive outcome regarding my life here. again, I welcome discussion. Any blog post I have written was meant to bring issues to light so conditions would improve. I hope the staff and administrators here are reading my blog. I welcome your comments.

I need to blog. I need people to read my posts. I need to speak my truth. It is what I do. You don't have to read my blog, but I am still going to write it.










Wednesday, August 23, 2017

QUIET PLEASE

I don't know if writing this blog is worth it anymore. People connected with this facility do not like my negative posts. If my posts offended anyone I  apologize. That was not my intention.

When I wrote for Voyce the staff there wanted to know what life was like for me here.  I made a video for them. They used my essays and video in training sessions. I was using my voice to try to make things better. I was making a difference. That's what this blog is about. Shedding light on issues.I decided to write the essays as blog posts because I thought my essays would be of interest to my readers. They were.  My aides were not happy. I was retaliated against. Aides refused to come in my room. Some of them asked me not to write about them in my blog posts. I was and still am, thought of as someone who gets people fired. I don't have that much power. Aides get written up or fired because of their behavior. 

Believe it or not, I am I the last person who wants to see anyone lose their job. The aides have families. They need their jobs. I just want to be treated fairly, listened to and have my wishes respected.  I stopped writing for Voyce. The pressure was too much. 

If some all the aides here took the time to get to know me,, instead of listening to rumors and judging me by my past behavior,, they would see the kind of person I am. I am just trying to get my needs met, not have accidents and not be forgotten.

I am learning that if I advocate for myself things just get worse. .No one will help me. It took me almost three years, but I understand now. it is best to keep quiet and get the assistance I need.It's sad, but it is a fact. If I speak out no one wants to listen.

I wanted to make a difference. I wanted my writing to matter. I wanted to help to bring about change. I felt it was important to let people know what it is like to live in a skilled nursing facility.I wanted to write my truth.

I think I will stop blogging for a while. If I cannot speak my truth there is really no point.

I will still be writing.Writing is a part of me.  I just won't be blogging. Maybe I will blog again, maybe I won;t. Only time will tell.








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.