Monday, September 18, 2017


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 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


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


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


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


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.