Thursday, December 26, 2013

CHRISTMAS IN HEAVEN

This is a short essay on my idea of what I think Christmas is like in Heaven.  If you're like me, it's at this time of year, that you miss loved ones in Heaven the most.

The planning for Christmas in Heaven begins months in advance.  Everyone’s given a job based on whatever unique and special talents they possess. The chapel is given a fresh coat of paint.  The chapel has beautiful stained glass windows..Each one depicts a Bible story.  They are washed until they sparkle.  All the decorations and ornaments are checked to make sure that none are broken. A Christmas tree adorned with white twinkling lights will stand inside the chapel entrance.  Every year, the tree is so high it almost touches the ceiling.  There is just enough space for the angels to place a solid gold star on top of the tree.  A crystal nativity is placed underneath the tree. 

The music in Heaven is magnificent.  Choirs practice daily.  The angels play their harps with the other musicians until the music and voices blend together perfectly.

Everyone gathers in the chapel, at midnight on Christmas Eve, to hear the story of the birth of Jesus.  Each person is given a candle upon entering the chapel.  By the time Silent Night is sung, the chapel is illuminated only by candlelight.

 Angels sound the trumpets on Christmas Morning to celebrate the birth of Jesus.

There are no presents because being in Heaven and part of God’s Eternal Kingdom is the best gift one can receive. However, everyone does get a new robe made of the finest silks and brightest colors. After a short service in the chapel, there is a large feast.  Because there are people of all nationalities in Heaven every food imaginable is served.  The cooks have been preparing the menu for months.   Each year, all agree, that year’s feast was better than the last.  Each person at the feast, is asked to share a memory of a special Christmas on Earth 

The part of the day that all those in Heaven look forward to the most is the time they get to spend with their families on Earth. You see, those we love who are in Heaven, never really leave us. I believe they see and hear everything we do. So, if you feel a gentle breeze touch your cheek or feel a slight touch on your shoulder, that's a sign that your loved one in Heaven is near, 

I want to wish you a Joyous Holiday Season.  May there be Peace on Earth for us all.





Thursday, December 12, 2013

THE WEATHER OUTSIDE IS FRIGHTFUL

I hate winter. I realize hate is a strong word. A friend once told me never to use it.  They suggested I use the term strongly dislike instead. In the case of my feelings about winter, however, the phrase strongly dislike is too soft a term to describe my feelings.

When I was little, if there was ice or snow on the ground, my school bus could never make it up the hill to my house. My mom would drive me to the bottom of the hill where we'd wait for the bus. Sure, there was heat in  the car, but it was still not very warm. My mom would call the street department every year and explain the situation. It took years, but finally, a truck put salt on our street.

When I was in college I would have to wait for people to open doors for me as automatic doors were only a dream then. I would get very cold if there was no one around and I had to wait for someone to come help  me. On the plus side, It was a good way to meet people.

I don't like having to wear heavy coats (or in my case capes) because I have to ask people to help me take it off and put it back on. I try to dress in layers and not wear a cape whenever possible, but sometimes it's too cold to go without my heavy cape.

My power chair doesn't go through snow very well. If the wheels get too wet the tires just spin.  One year, after it had snowed, I wanted to walk to the library because it was my day to volunteer. I didn't realize how snow covered my street was. The library was just across the street. We could make it. My caregiver and I started out. We didn't get far when my chair got stuck in he snow its tires spinning.  My caregiver tried, but couldn't budge the chair. Luckily, my neighbor saw us and helped me down the hill.

Cold weather never bothered me when I was younger. The older I get, it seems, cold weather bothers me more and more. I get cold much faster now and it takes longer for me to get warm again.I cannot imagine having to wait in the frigid temperatures we've had for public transportation, but i know  there are people with disabilities who do because they have  no other choice.

Winter weather may  force people with disabilities to stay home because it's just too difficult to get around. I have cut my days at the library to one day a week until spring.  I'll be home more, but I'll keep busy writing, reading and playing games on Facebook. I'll volunteer at the library wham the weather is good.

Snow is pretty, but to someone with a disability is just another obstacle, another challenge. Technically, it's not even winter yet, but i'm already asking, "How many days til spring?". 












Thursday, November 28, 2013

THANK YOU

On this Thanksgiving morning, I'm thankful for all the comments I have  received on my previous posts titled Blessings  and Find Your Passion. Your kind words warmed my heart. There were times, when I begin writing this blog, when I wondered if anyone was reading my words at all. I don't have wonder anymore. I'm proud and humbled to know that what I write means so much to so many people. 

I thought about writing a new blog this Thanksgiving, but when I read my post from last year, I realized that I am grateful for many of the same things this year as well. I decided to re post last year's entry.  If you are a new reader, I hope you'll take the time to read it. If you remember reading this last year. I hope you'll want to  read it again. I always find something new in anything I read more than once. Something I missed reading it the first time. 
http://confessionsofadisableddiva.blogspot.com/2012/11/so-much-to-be-thankful-for.html

I want you to know how thankful I am for all of you. Your continued support means more than you'll ever know. Happy Thanksgiving.




Monday, November 18, 2013

BLESSINGS

Yesterday afternoon, as I listened to the wind howl and the rain come down is sheets against my windows, I was thankful for the phone call I received from my brother that morning, alerting me to a possible tornado threat. When  I had checked the weather earlier, the threat of a tornado wasn't mentioned. I was thankful that my caregiver was able to stay with me throughout the storm. I was thankful that my neighbor phoned to check on me. As disabled people, we like to say that we live independently. The truth is, the reason we are able to live independently, is because of the support system we have in caregivers, our family and friends. Without, a good support system, our living situations would be completely different. 

I'm thankful that the only damage I had was tree limbs down. I saw the devastation caused by storms that plowed through parts of the Midwest. I can't imagine what it's like to lose everything in a matter of seconds. One minute you have a home, the next minute you don't.  The only positive thing about the situation is that you are alive. I pray I never know that kind of loss. My heart goes out to everyone affected.

I don't remember many storms like the one we experienced yesterday. The rain passed quickly. The strong wind gusts lifted up the metal awnings on my house.  They came down with a bang. We sat listening to tree limbs snap and fall to the ground. We wondered how long it would last. The winds finally calmed and it turned out to be a beautiful Sunday afternoon.  

This Thanksgiving, I am thankful for all the people who make it possible for me to live independently. I'm thankful that I have a home and that I am safe. It might be silly to write this, but I think sometimes we need to be reminded just how fortunate we are.  That's what the storm taught me. To appreciate and be thankful for what I have. It showed me just how truly blessed I am.






















Sunday, November 10, 2013

FIND YOUR PASSION

I haven't posted a blog in quite awhile. That doesn't mean I haven't been writing. I have been making revisions to another children's story that I hope to publish next year, as well as putting in a few more hours volunteering at the library.  I submitted an editorial to The St. Louis Post Dispatch on the Cost of Living Adjustment for 2014, 

When it was suggested to me that I give my thoughts on this subject my first thought was that I was not qualified. All I knew was that the COLA would be low, which meant retirees, and people with disabilities, would receive less money in the coming year. How could I write 700 words on a topic I knew so little about?

I went to the reference section of the library. I got information, I read.  I learned about the Cost of Living Adjustment, Consumer Price Index and inflation. I began writing my article. I have bouts of depression at times. I noticed as I was writing my article, I began to feel energized. I had a purpose which was to write an insightful article. I hope my article makes the paper. If it doesn't, I am still happy I had the opportunity to write it.  I wrote about something well out of my comfort zone and I learned a lot in the process. 

Writing gives me a purpose. Sometimes, it’s the reason I get up in the morning. I'm working with an editor on my second children's book. I'm always excited to see their suggestions on how my book can be improved. . 

I may get a little obsessed with my writing. That's because it is so important to me. I want what I write to be worthwhile. I hope that people who read what I write will learn something they didn't know before.

I think it's important for everyone to have something in their lives they are passionate about. It just makes you feel better. It's something to get excited about. It's something to share with others. I have met many wonderful people because of my book and blog. Its fun meeting others with whom you share a common interest.

I love writing. I love books. These are my passions. What are yours?  Leave me a comment and let me know.


Tuesday, October 22, 2013

OUR FUTURE

Last week, I was saddened to learn that the increase in Social Security for 2014, will be the lowest since nineteen seventy-five. About one point five percent People with disabilities and senior citizens depend on their Social Security and Supplemental Security Income Checks to live. I love my country. I am proud to be an American. We are a nation always willing to lend a hand to other nations, to help them learn to live in peace. Sometimes, though, in our willingness to help others, we may forget that there are people right in our own backyard who need help 

How can the increase be lower when the cost of food and utilities keep rising/? I’m worried about the future of Social Security, and Medicaid. If these programs disappear in the future, what will happen to the disabled and seniors who depend on them to live independently? If I were to go on Medicaid, I would only be given approximately six hours a day attendant care, five days a week. I need 18 hours a day every day. I would probably be placed in a nursing home.

A friend of mine, on Medicaid, once had to wait several days to have their medications refilled because their social worker was out of the office. This same friend needs some new equipment to assist them in their personal care. They have been trying to get in touch with their social worker, but the social worker has not returned my friend's calls.

My parents worked hard and saved their money because they knew I’d need care to live my life. I wish there was a program that would pay part of my caregiver expenses so that my funds could last as long as possible. When I told a social worker that's what I was looking for she said, "No agency is going to help with something like that." 

Services for the disabled and seniors need to be improved not cut. No one should have to wait days for their medication because a social worker isn't available to sign a form, or too busy to return a phone call. No one should have to risk depleting their funds trying to live the best life they can.

I'm sure you all have opinions. These are mine. I am worried about our future. I hope that programs and services for disabled and senior citizens will be better in the future. That programs and services that have been cut will be restored. Maybe that's wishful thinking. Something needs to be done so that all of us can live the life we want and deserve.









Sunday, October 13, 2013

WHAT'S IN A NAME?

Several weeks ago someone suggested I change the name of this blog to Confessions of a Disabled Warrior. I can understand why. People with disabilities fight battles every day.  They fight to be accepted and respected by society. They have to work twice as hard to prove that they are as good as everyone else.

They went on to say that if they didn't know me and they were surfing the Internet and saw my blog title they wouldn't stop to read it because the title wouldn't grab their attention. Because I want to expand my readership. and because I value this person's opinion, I thought seriously about changing my blog's name.

I always thought Confessions of a Disabled Diva would be the title of my memoir. Since I haven't started writing my memoir yet, when I got the idea for this blog, it seemed like the perfect opportunity to use the name. It 's cute and catchy. However, until a few weeks ago, I had no idea what the word diva really meant. One Sunday afternoon I found out.

The word diva is typically associated with opera singers and other famous singers, Divas are people who'll do anything to get what they want, not caring who they hurt or what it cost them. I also read something about a diva being into high fashion. None of these definitions describe me. I love to shop though, so does, that count as being into high fashion?

There was one definition I read that I liked. A woman who achieves success through hard work and determination can be thought of as a diva. I don't want to be famous, but I am determined to have this blog reach as many people as it can. It's happening already. When I look at my stats on Blogger, I have readers from all over the world. I'm amazed and overwhelmed.

So, I'll keep the name Confessions of a Disabled Diva. Plus, I have to be honest, it's pretty cool to be called Diva by someone who knows and reads this blog. When you think of the word diva in relation to this blog, remember the definition that spoke about hard work and determination because that's the kind of diva I am. 












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Monday, October 7, 2013

WHO'S HIRING?

Disability Employment Awareness Month is celebrated nationally during the month of October. In nineteen forty-five, Congress passed a law making the first week in October "National Employ the Physically Handicapped Week." In  nineteen sixty-two, Congress dropped the  word physically from the name of the law so that people with all types of  of disabilities could be included. In nineteen eighty-eight, the name was changed to it's current one and the week was expanded to a month. This year's theme is "Because We Are EQUAL to the Task.'

People with disabilities who are able to work want to work and contribute to society. We want to feel good about ourselves and know that we are making a difference. We have skills that need to be utilized in the workplace. All it takes is for employers to see past a person's disability and give then a chance to prove themselves. It also takes a willingness on the part of an employer to make the "reasonable accommodations",to enable a person with a disability  to do their job effectively  

The staff at Meramec gave me a chance. They knew how much I waned a job there. I developed my computer class so they could see I had something to offer them. They encouraged and supported me. Most importantly, they.believed in me.

To all employers who are hiring, give a person with a disability a chance. I guarantee they will work hard and be one of your best employees.

I hope someday. the need for a month devoted to motivating employers and making them aware of the ways hiring someone with a disability could be an asset to their company, will be a thing of the past. That we'll all be looked on as equals and be hired because we're the best person for the job.









Wednesday, October 2, 2013

I GOTTA KEEP ROLLIN'

I began using  a power chair in high school.  I may have mentioned, in a previous post, that my eighth grade teacher was disabled and a former student at the school.  She used a power chair for a while. When she didn't need it anymore, she left it at the school and I was fortunate enough to be the one who was given the opportunity to use it at school. The freedom it gave was indescribable.

My senior year in high school, we began looking into getting me my own power chair. I remember when they brought one to school for me to try out.  It was a chair from England.  I had that chair for many years and had very few problems with it.  But when I needed a new chair that chair wasn't available here anymore.  I guess it was too costly to bring to the States.

Shopping for power wheelchairs used to be like shopping for a new car.You would have the opportunity to see and try out a variety of different chairs and choose the one that best suited your needs.  Unfortunately,it is not that easy today.  

Today there are no more wheelchair showrooms.You are shown pictures instead of the actual wheelchair.  Your need must be verified by your physician   If you want a new chair,the vendor selling the chair must prove to your insurance company that there is a medical need for the chair you want. A twelve page form must be filled out and a physical therapist must come out to your home to asses your needs. If it's proven that the chair you want does not fulfill a medical need, you will be denied the chair you requested.  Probably sold a different chair. One that is more cost effective for Medicare or Medicaid. 

I have had the same power chair since  nineteen ninety-nine.  It's nothing fancy. In fact, I have been told that the design is a manual chair with batteries and motors attached. I like the chair because it is not that big and heavy.  It works well in my house. I desperately want a new chair, but I want the same model or as close to what I'm using now as possible. 

The manufacture of the chair I want  is in a decent decree with the FDA. The manufacturer failed to follow the proper rules and regulations as set forth by the FDA.  While the FDA reached an agreement with the manufacturer in December 2012, vendors are still not allowed to sell the chair I want because (from what I gathered from my research) the manufacturer has not passed audits and inspections subject to the approval of the United States District Court of Ohio.

I keep being put off.  First, I was told everything would be settled in June, then September and now I was told, hopefully, January. I don't really care what rules and regulations were broken by the manufacturer. I care that because they are not fixing their issues in a timely manner, I, along with many other disabled people, cannot get the chair we want.  Because my chair is old, the motors could stop working and at any time.  I pray that doesn't happen before I can get a replacement chair.

Those who make the rules at Medicare and Medicaid, as well as those who manufacture wheelchairs,don't spend eighteen hours a day in them. Give more control back to the consumer. Think about what's best for the person,, not just what's cost effective. I was told couldn't get a softer cushion because I don't have any skin breakdown. Rather than letting me have a softer cushion, to prevent me from getting pressure sores, my insurance company will only allow me to have a different cushion if I have a problem. What sense does that make?

Insurance companies should be concerned with the comfort and well being of individuals using wheelchairs, not just what's in their best interest.  





  

Monday, September 16, 2013

WE STILL HAVE A LONG WAY TO GO

Last Saturday was a beautiful day.  The sky was blue and the temperature was in the seventies with a light breeze.  The perfect fall day.  I was happy because I'd  had a book signing at a friend's bookstore.  A couple of people came in and bought my book and three had been sold since the last time I'd been in, making a total of five books sold. It had been a nice afternoon visiting with Robin, the owner,and selling books. The perfect day until ... 

My caregiver and I decided to go out for dinner to a well known seafood restaurant.  We were taken to a table. A few minutes later our server came and asked what we would like to drink.  I always have a glass of wine if I go out to dinner on a Saturday.  I told our server the wine that I wanted, at which time, he glanced at my caregiver with a look that asked, "Is it okay for her  to have wine?"  My caregiver nodded that it was and our server brought my glass of wine.

This  may not seem like a big deal to you, but every time an incident like this occurs, I'm reminded that there are still some people who view me as different from everyone else.  People who see the wheelchair and make assumptions that I can't think for myself.That I wouldn't know not to order a glass of wine if there were some  medical reason why  I shouldn't.

Several weeks earlier, we were at the same restaurant and our server was speaking to my caregiver about my order rather than to me.  I asked our server to speak to me directly.  I was clear about what I wanted, but our server brought the wrong salad.  My caregiver told our server that I wanted shrimp in my salad, not chicken.  Our server offered to make another salad, but it would have taken too long.  I ate the salad with the chicken in it.  The good news, I was given a free dessert because of the error.

Disability awareness and sensitivity training workshops or speakers should be made available to anyone who is a restaurant employee. I don't know how realistic it is to expect managers to provide this kind of training.  I just know that it's needed. .I'm asking anyone reading this post, who is employed at a restaurant, to always remember to treat a person with a disability with the same dignity and respect that you would show any other patron you were serving.  Listen to them.  Don't assume that just because they have a disability, they can't think and speak for themselves.  

I always think we have come a long way.That people have changed their opinions about people with disabilities. That they know we're just like everyone else. We just do some things differently. Then, an incident happens, like the one that happened last Saturday,and I see, while we have come a long way in the acceptance of people with disabilities, we still have a long way to go.




Wednesday, September 11, 2013

THE MISS AMAZING PAGEANT

I saw this video on The Today Show.  http://www.today.com/news/miss-amazing-pageant-puts-girls-disabilities-first-8C11101506  It made me cry.  I saw young girls and woman with disabilities competing in a beauty pageant.  As the contestants walked and rolled across the stage,. they were radiant not only in  beauty, but in confidence as well.

The pageant was started by Jordan Somer, who had been in pageants herself when she was younger. Competing in pageants taught her self confidence and commitment.  She learned that success wasn't about coming in first, but rather, about taking control over who she would become.  Ms Somer has also worked with the Special Olympics where she saw first hand the determination and commitment of the athletes.  

Miss Somer wanted to share the pageant experience with girls who had disabilities. The first Miss Amazing Pageant was held in Nebraska in 2007.  The only requirement is that contestants give five cans of food. The first job of the pageant division winners is to distribute the cans of food to homeless shelters.  It's a way for the girls to be involved in their community and to learn about the importance of helping others and giving back.

The pageant builds self-confidence and self esteem and promotes inclusion of girls with disabilities in their community. Through the encouragement and support of the pageant organization, the girls strive to reach their full potential, to be the best that they can be in life.    Girls in the pageant learn they can set goals and achieve them. When I was watching the video I saw how proud and happy the contests were. They knew that they were just as good as anyone else.

I want to applaud Jordan Sommer for creating The Miss Amazing Pageant. I would have given anything, to have had  an organization like hers available to me  when I was growing up. (I received very few positive messages at the school I attended.) A place that would have helped me overcome my issues with low self esteem.  A place that would have encouraged me to set goals because through hard work and determination I could attain them.  A place where people knew I deserved the opportunity to reach my full potential in life .A place that let me know I was worth it.








Thursday, September 5, 2013

MY ROAD TO (PART TIME) EMPLOYMENT

I graduated from The George Warren Brown School of Social Work in nineteen eighty-two. In my last year of graduate school I had two internships.  The first was at a children's hospital.  My boss took me on in the hopes of getting me a job as the social worker for Shriners Hospital.  At the time, the children's hospital was providing a social worker for Shriners. I remember meeting the social worker at Shriners every Friday.  I had a good rapport with all the patients.  That stemmed from the fact that I had been a patient there.  The children knew that I could relate to what they were going through better than anyone else.  I led a weekly group for teenagers where they could come and share their feelings about being in the hospital. I enjoyed it immensely. Unfortunately, Shriners would not consider hiring me because I hadn't had two years of work experience.  When my boss at the children's hospital learned this she wouldn't give me any other responsibilities. Other than making phone calls to remind parents of their child's clinic appointments, I did very little.  The internship was supposed to last for two semesters, but my boss ended it after only one.

My second internship was at an organization that offers health care to low income families. I was an intake worker.  My main job was to asses a client's needs and refer them to the appropriate place. I mainly gave out vouchers for food and bait to catch rats. The organization had no funds to pay me; however, they did offer me a volunteer position. I declined.

I was home foe two years after graduation.  I sent out resumes, took the state tests and the only jobs I was ever offered were the jobs no one else wanted.  Night jobs and jobs at psychiatric facilities.   The last interview I went on was at a psychiatric hospital.  The position involved working with adolescent girls. When The woman asked me what I would do if one of the girls turned my chair over, I had no answer  The interview ended.  .  

I have written in a previous post how I got my job at Meramec. An instructor gave up his lunch hour to teach me and to other young woman with disabilities word processing. The other two quit, but I stuck with it.  I saw a need for individualized instruction, especially for older adults, while volunteering in the computer lab. With the support of those in the lab, I developed the syllabus for the class and presented it to the dean.  The funding for my class almost got cut after the first semester.  Luckily that didn't happen The dean made sure I had a job, with Continuing Education, for as long as I wanted one.

While teaching at Meramec, ,I  tried to get a job as a sales rep for a well known greeting card company.  The rep for the area was in her nineties.  she did almost everything out of her house and on a computer.  She told me the job would be too difficult for me during our one phone conversation. 

I'm now trying to become a freelance writer/journalist.   There may be rejections along the way. That's okay.  I just have to be patient..I know that it will happen.

Monday, September 2, 2013

VICTIM OR WARRIOR

A friend emailed me a quote from an author she knows. "When faced with adversity you have a choice.  You can choose to be a victim or a warrior." I began thinking of times in my life when I allowed myself to be a victim as well as times in my life when I have been a warrior. 

I started the public school for the physically disabled at the age of six. Even at that young age, I knew I didn't belong there, but it was the only option available as my parents couldn't afford the tuition it would have cost to send me to school in the county. The first six months I didn't participate in much of anything at school.  I guess I was waiting for my parents to realize that they'd made a mistake and take me out of the school.  I desperately  wanted to attend the school in our neighborhood that my brother went to.   I finally realized that that was not going to happen.  I resigned myself to staying and, as you know, was there for thirteen years. To say I was a victim academically and socially from being at the school is an understatement. I have written about the school before so it's not necessary to repeat myself.  The education I received was lacking in so many ways.  Being at that school is the only time in my life where I was a victim of circumstance and there was nothing I could do about it.

I have always had trouble standing up for myself.  My classmates would make fun of me at school and I didn't talk back or do anything about it.  There was no point.  If they thought I was a nerd, so be it.  Even today, I don't always stand up to people. when  I should.   I'm  happy to say I'm getting better at it.

The first time I stood up for myself was when I was a senior in high school.  My mom had talked to one of the other mothers who had a son at my school too.  She convinced my mom to keep me in high school five years so that I didn't graduate with the children I had gone all through school with. I put my foot down, however, when the woman said my mom should send me to the United Cerebral Palsy Center rather than my going on to college as my brothers had done.  I told my mom if she sent me there I'd never speak to her again.   She knew I meant it. My going to  the center was never brought up again. The center's a great place for those who choose to go there.  It just wasn't the right choice for me.

When my mom was sick and on hospice I became a warrior for her.  I wanted to make sure her wishes were carried out and that she got the best care possible.  I wanted to make sure she stayed at home and didn't die in a hospital.  I did everything I could to make her comfortable and happy.  I'm a warrior for Lucie too.  I'll do anything I can to make sure she's happy..

I'm a warrior for myself because I want the best caregivers  and the best care possible.  if I don't feel a caregiver is right for me,  I ask for a replacement.

Being a warrior isn't easy.  Fighting for what you want and believe you deserve.  Sometimes the fight seems to difficult and you may want to give up.  But giving up is not an option.  You can't just be a victim and let life happen to you.  You have to be a warrior and a participant   Stand up for yourself so you can have the best life possible.  It may not be easy, but it will be worth it.

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Wednesday, August 28, 2013

THE PAST FEW WEEKS

I was going to take time off from blogging.  I didn't think I had anything of value to tell you. After deciding this, I received emails from several people asking if I was okay.  I guess I didn't  realize how much all of you look forward to reading this blog.  I decided to write about what's been going on in my life for the past few weeks.

Almost two weeks ago, on a Saturday morning,, after she had coughed all night, I was prepared to have Lucie put to sleep.  She was coughing, shaking,,breathing rapidly and pacing, unable to sit still.  Two days prior to this, I had taken her to the vet because she'd gotten sick and was refusing to eat or drink and breathing rapidly. She was on oxygen at the vet for a while.  She was put on a third medication which I'm told will give her three good months, possibly six.  The vet said he would try the new medication on his own dog.  He thought Lucie would do well on it.  Anyway, that Saturday morning  it was clear the medications were not working.  I felt there was only one option left, to take her to the vet to be put to sleep because as much as I want Lucie with me,  I never want her to suffer.  My neighbor was going to follow my caregiver and me to the vet. She and I would stay with Lucie until the procedure was over. Arrangements were made.  I was trying to come to terms with the fact that I only had a few more hours with Lucie.  All of a sudden she was barking and waiting patiently for a doggie treat.  She was given her medications and has been doing well ever since.  August 18th was her 14th birthday.  A friend said, "Lucie has nine lives like a cat."  I'm beginning to think she's right. 

One of my caregivers, who works during the day, is always calling and complaining that she does most of the work.  She complains about what the other caregivers haven't done.  She has called the agency on my other caregivers numerous times.  The other two caregivers work mainly at night.  I don't expect anyone to  do housework at night   Today she called again. After the call, in which they offered to replace her, she and I talked. I told her what her duties were. I told her she can't keep calling the agency because they are getting tired of it.  She likes working for me and wants to stay.  I told her to worry about doing her job and not what other caregivers are doing.  If she has a problem we'll talk it out.  I hope the situation is resolved. 

I almost lost a friendship  because I spoke my mind.  It was thoughtless and I regretted what I had said immediately. Not one of my proudest moments.  I thought about omitting it from this post, but it was part of what was going on in my life so, I included it.  There were a few days .when I didn't think we'd work things out.  Thankfully, we did

I guess the message from my experiences  over the past weeks is whatever difficult times you may be experiencing right now, know that you are strong enough to get threw them. And also, that you are not alone.  Everyone struggles, just in.different ways

Thank you for reading my blog and for caring about Lucie and me.  Until next time.  

Monday, August 12, 2013

PERSEVERANCE

I play a game on Facebook called Word Tornado.  It is really just a fancy name for Scrabble. The only difference  between Scrabble and Word Tornado is  Word Tornado has a time limit. You have a little over a minute to create a word with the tiles you are given.  If you fail to do so you lose your turn.  I like the fact that the game has a time limit.  It makes the game more challenging.  When I first started playing I didn't score well at all.  I was determined to improve.   I didn't let the fact that I scored low deter me.  I had been playing for months. Sometimes I felt like giving up.  I didn't.  My scores began to improve.  Now, sometimes, I am even one of the top three players.  Don't get me wrong, I still have bad games, but I continue playing because I know I will have good ones too.

I always said I wanted to work at Meramce.  I volunteered in the computer lab.  I learned everything I could, I helped in the lab in any way I could. I didn't give up until my dream became a reality

When I purchased my first laptop I didn't want to use the keyboard mouse.  I thought it would be difficult for me to use.  I wanted a mouse like the ones I used at Meramec  I bought a mouse and plugged in into my laptop.  Over the years, the trackball of the mouse became worn down causing the mouse not to move properly.  I had no way to get it replaced. I told myself that if I was going to continue to use a computer, I would teach myself to use the keyboard mouse.  It wasn't easy.  I found the mouse on my laptop to be more sensitive than the mouse I was use to. The keyboard mouse was more difficult for me to control.  It took a lot of practice, but I finally learned to use the mouse on my laptop. I was so proud when I mastered it. 

I refuse to give up on my writing.  I will continue to write because, someday, I know I will have a column published in a newspaper or magazine.  I just have to stay positive and not give up. Anything worth having takes hard work and determination.

I want to tell you about my nephew, Kyle.  For as long as I can remember,Kyle has played baseball..He played every season, every chance he got.  He spent a couple of summers in Maine playing on a team in college.   Kyle had a dream to play professional baseball.  He didn't give up. This spring Kyle's dream became a reality.  He was drafted by the St. Louis Cardinals. He's currently a pitcher for their minor league team The Johnson City Cardinals in Tennessee.  I am very proud of what Kyle has accomplished. I wish him the best as he begins his professional baseball career.  Kyle is the best example of someone with perseverance that I can give you.  With hard work, determination and a belief in yourself, dreams can become reality.  All you have to do  is persevere.. .   





Sunday, August 4, 2013

PETS ADD SO MUCH

Having a pet enriches your life. It has been proven that petting a dog can lower your blood pressure. Pets teach children responsibility and to have empathy for another living being. Even something as simple as watching a tank filled with fish is relaxing.  When I was little we had a fish tank.  I used to love to watching  the fish swim around in it.  They were so graceful. We even had a gerbil for awhile.  I got to take it home for the summer on the last day of school.

There has been a dog in my house since I was two or threes years old.  I have been particularly close to our Maltese, Frosty and Lucie.  My readers know  about the special relationship I have had with both dogs. I have written posts about both of them.  Sometimes having a dog forces me to put their needs before my own.  Just like a parent does with their child. Having Lucie allows me to use the maternal and nurturing side of my personality.  She depends on me. When we visit the vet and they take her to the exam room, she frantically looks back to make sure I am following.  I tell her,"Lucie, I'm coming.  You know I can't move that fast.  I'm not leaving you."

When I volunteered at the independent living center and visited my client at the nursing facility.  I was surprised to see the facility had birds, in the lobby, a fish tank at the end of the hall and there was even a cat in residence. One, when I was leaving, I rode done in the elevator with a man who had brought a dog to visit the residents.  Facilities  must see the benefits of having animals around.

I hope there will always be a dog in my life.  Having a pet makes your life better.  Pets don't judge you.  They accept you as you are.  You care for them and they give you love, loyalty and devotion in return.   There's no other relationship like it.






























  






Sunday, July 28, 2013

IF I HAD JUST ONE DAY

Someone asked me recently, if I were given one day in which I had the opportunity to live disability free, how would I spend my day?  I guess it's silly because I know it can't happen.  There's no magic pill.  My CP is a part of me.  Without it, I would be an entirely different person.  My interests would probably be different too.  I have been disabled all of my life. Believe or not, the thought of not having my disability is scary because it's all I know.  However, having said that, I have to admit the question was a thought provoking one.

My first thought was I'd fly to California.  Some the best vacations I have ever had were trips to California.  I have always loved reading about France too, but never had the opportunity to go there.  Realizing both trips would take a lot more time than one day; I tried to think of something else.

The answer I came up with is a simple one.  I would spend the day taking care of myself.  I'd do all the things an able-bodied person takes for granted.  I'd get up in the morning, get dressed and get myself to the bathroom.  I'd spend my day free of caregivers. 

I have to plan everything.  I go out when I have a caregiver to drive me.  I am lucky I don't have to rely on public transportation because, as I may have mentioned in a previous post, transportation for the disabled has to be arranged several days in advance. It is also not dependable.

In order to stay alone for short periods of time, I even have to plan when I go to the bathroom.  I am sure not many able-bodied people have had to do that. 

Tomorrow morning, when you are getting dressed, stop for a moment and remember how fortunate you are not to have to rely on others to assist you. Don't take the little things for granted.  Circumstances can change in the blink of an eye.  Be thankful and grateful for the life you have. Even the struggles.  I know I am. 

Thursday, July 18, 2013

IS THIS REALLY GOODWILL?

A report, on NBC News, last month shed light on the fact that in many states, disabled people who work for Goodwill Industries are paid well below the minimum wage of seven dollars and twenty-five cents per hour.  Workers in some states make as little as twenty-two cents per hour.  Because of a loophole in the Fair Labor Standards Act, passed in nineteen thirty-eight, paying disabled workers well below minimum wage is legal in this country.  http://investigations.nbcnews.com/_news/2013/06/25/19062348-disabled-workers-paid-just-pennies-an-hour-and-its-legal?lite 

So, while the bosses of Goodwill industries are making millions of dollars, disabled employees are making almost nothing.  The rationale being that the workers don't really care about the money and they are just happy to have a place to work.

This issue is about paying workers what they deserve for the work that they do. Letting them know they are valued employees.  No able-bodied person would work for as little as twenty-two cents an hour.  Why should a person with a disability be expected to?  I'm wondering how those in the corporate offices of Goodwill Industries sleep at night?

I remember getting my first paycheck.  It was such a good feeling when I bought something with money I had earned.  I felt the same way when I sold the first copy of my children's book. Every disabled person who is employed deserves to know what that feels like. 

The disabled employees of Goodwill Industries just want to be treated fairly and earn a decent wage.  I don't think that's asking for too much.  Do you?   






Sunday, July 14, 2013

THE BEAT GOES ON

Cher. Whether you love her or hate her, hearing her name probably brings back a memory.  It may be a song you heard or you may remember those fabulous Bob Mackie gowns she wore on her variety shows.  That’s where I first saw her.  I watched the Sonny and Cher show every week. Whatever it may be, I know everyone has a memory.

I have been a Cher fan for more than half of my life.  I have some good memories.  Like the time I was out with my physical therapist in high school.  We had been to a record store where they had a life-size cardboard cutout of Cher. I thought it was the coolest thing I’d ever seen.  However, the store owner wouldn’t part with it.  We were in her car, ready to leave, when my therapist said she’d be back in a minute.  A few minutes later she came out of the store carrying the cardboard cutout of Cher. I never knew what she said to get the man in the store to give it to her.  After getting it home we noticed it had been promised to someone else. She must have told the man a really good story.   The cutout stood in my room for years.  It was a great conversation piece.  Sonny and Cher were doing a concert here and it was announced on the news when their plane would be arriving.  My mom and I hurried to the airport in hopes of seeing them arrive.  We mad it all they way to the gate, but were told we couldn’t stay to watch their plane come in.   We raced to the hotel where they were supposed to be staying, but we were told they weren’t staying there.  Probably the best memory I have is going to her concerts with my mom.  I know she liked Cher, but I think she liked seeing me have a good time even more.

Cher’s music has helped me through some difficult periods in my life.  The last time I had surgery, a psychologist told me to play her music to help ease my fear and stress.  Cher’s music was also paying while I wrote the remarks that were read at my m mom’s funeral.

My favorite Cher quote is: If you really want something you can figure out a way to make it happen.

I aspire to be like Cher.  No, I don’t want to sing or act.  Cher is a strong person who speaks her mind and doesn’t take the word "No" for an answer.  She never gives up.  






Thursday, July 4, 2013

INDEPENDENCE DAY

I'm proud to be an American.  I'm blessed to live in a country where I'm free to express myself in a blog like this. I am thankful for the support system that I have in family and caregivers.  They help me lead an independent life

I had a student in my computer class once who was afraid of me. I believe  she was Vietnamese.  Seeing me upset her so much that she was in tears.   My boss spoke with the woman and told her that she had no reason to be afraid of me. Sadly, I think the woman dropped my class anyway.  I remember feeling strange because no had actually said they were afraid of me before.

I mentioned the incident to my brother who'd been a doctor in Vietnam.  He explained to me that in Vietnam disabled people were kept inside.  They never went out.  People never saw them.  I was probably the first person, with a disability, my student had ever seen.

Independence and freedom are not things I take for granted. Had my parents felt differently they could have placed me in an institution.  They didn't.  I had and have a good life.  I was able to get an education and hold a part time job. I have traveled and had the opportunity to meet some great people. I can't imagine being shut off from the outside world.  Not having the opportunity to experience life.

This day is about much more than barbecues and fireworks.  It's about remembering not to take the freedom we have for granted.  

HAPPY BIRTHDAY AMERICA!!




Sunday, June 30, 2013

MY MESSAGE IN A BOTTLE

The idea for this post this post came from this article on Yahoo.  http://news.yahoo.com/blogs/sideshow/message-found-bottle-97-years-under-water-goes-170210979.html;_ylt=A2KJ2PbSI85RAnMAmmLQtDMD  After I posted the link on Facebook, a friend asked what my message in a bottle would be.

2113, a century from now, I am trying to imagine what things will be like. The first thing that came to mind is that space travel is commonplace for ordinary citizens.  People will be zipping around in space like the Jetsons, discovering other life forms and learning from them.

No more typing on computer keyboards or using voice recognition software.  You’ll be able to use a computer by just looking at the screen.  The computer will be able to complete tasks for you by reading your mind.

Okay, I may have gone a little too far talking about the computer.  Here's what I hope is happening a century from now. I hope that all major diseases like cancer have been eradicated so that no one has to suffer anymore.  Disabilities are   a thing of the past.  I hope that all the people of the world are at peace with each other.

If I put a message in a bottle and threw it in the Missippi River and watched it float away. Here's what my message would be:

Remember those who came before you.  Their struggles made life better for you. I was here.  I did my best.  I'm not perfect.  I tried, failed and tried again.  Try, do your best.  That's all you can do.  You'll be okay.



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Thursday, June 20, 2013

POSITIVE OR NEGATIVE?

It has been brought to my attention that my posts may be too negative.  I have been told I shouldn't write about things that happened in my childhood. It's in the past, so move on.  People have asked if anything good ever happens to me.

Of course, positive things happen to me.  The best thing that happened to me was being able to share my blog in two online newspapers and, it goes without saying, that the best thing to happen to me was being able to publish my children's book.  I'm blessed to have neighbors who look out for me.  During a recent storm, when my power was out, my neighbor gave me a flashlight with a button that is easy to press to turn the flashlight on.  It also has a beam of light that is big and bright.  My neighbor knows I get nervous during storms.  I go to my library three days a week.  Right now, I'm am signing people up for the adult reading club at the library.  I love doing that because it is a fun way to meet people.  I enjoy eating out when I can.  Several weeks ago, I went to Jilly's Cupcake Bar and Cafe.  I had a Twisted Pink Velvet Cupcake.  I didn't know cupcakes could be so delicious.  I can't wait to go back.  Why didn't I blog about any of these things?  Because I didn't think they had a message.  

I believe our experiences make us who we are.  I write about my experiences growing up because I want people to know what it was like for disabled people before the Americans With Disabilities act was passed.  Before the word inclusion existed.  It was a time when disabled children had very few rights. It was a time when we were segregated and had very little exposure to our able-bodied peers.  I wonder sometimes, especially at the school I attended, if we were even thought of as people by some of the adults who worked there.

When I write about something you might perceive as negative or depressing, the positive message to take away from it is, I got through a tough situation, I survived and I am sill trying to make a difference and live my life the best I can. 

That’s what I want children with disabilities to know.  Life is tough, when you have a disability, but you can get through anything.  You are just as good as anyone else.  You matter.  You deserve to be treated with respect and dignity.  Have faith in yourself.  When people tell you that you can’t do something, don’t listen to them. Keep trying.  If you’re striving for a goal that’s mean to be, it will happen.  If it doesn’t, come up with a new goal to strive for. The important thing is to never give up. I can't think of anything more positive than that.
  




Sunday, June 16, 2013

A NIGHT TO FORGET

I was given a new caregiver last week.  I also changed my schedule.  I asked that the new caregiver start an hour earlier to make it less stressful for me.  I went over the changes with the office staff and thought everything was fine.

My new caregiver comes from the home of another client.  They leave that client's house at the time they are supposed to be arriving at mine.  The first night .they arrived ten to fifteen minutes late.  That wouldn't have been bad, except for the fact that earlier in the day I called the office to confirm that the new caregiver was coming and was informed that the new caregiver was with another client and would not be coming.  The office told me they didn't have anyone else to send.  When I asked what I should do, the staff member said they didn't know, but I’d better call somebody.  They suggested I call one of my other caregivers. I didn’t think it was my job to find someone.  I was told a little while later that the new caregiver would be coming after all.  The office got the schedule mixed up. When the caregiver was a few minutes late, I was afraid they weren’t coming because of what the staff had told me earlier.

When the new caregiver's shift ended, the next morning, they assured me they would come on time that night.  I didn't think I had anything to worry about.  I was wrong.  They didn't come at the agreed upon time.  I called the office.  The office had not heard from the caregiver, they had no idea where the caregiver was. They were not answering their cell phone.  The office was trying to get someone to come for me, but having no luck.  I  was frantic and so were they.

The caregiver finally arrived two hours late.  Their explanation was that their car battery had died.  Their cell phone was also dead so they were unable to let anyone know what had happened.  Things turned out okay.  It was, however, a night to forget.

There are two things that bother me.  I have been told the new caregiver needs more hours.  Why schedule clients in such a way that their times overlap and as a result, a caregiver can't help but be late to a client's house?  The answer is a sad one.  Money is more important than a client's well being.

Caregivers always manage to keep their cell phones computers and other devices charged when they are working for me.  If a caregiver knows they are going to be traveling on the highway at night, it is their responsibility to make sure that their phone is charged and ready for use in an emergency.

I didn't write this to cause trouble for myself.  I hope I have no repercussions from writing this post.  The incident happened; it was frightening   I think there is too much focus on what is best for the caregiver.  They need more hours, so let's give them as many clients as we can.  While my caregiver is now coming on time, what affect does it have on clients when schedules overlap? Do agencies think about the stress it may cause a client when a caregiver is late and the client has not been notified as to why?

I have been with my current agony for almost six years.  Nothing like this has ever happened before.  I pray it never happens again.  I know home care is a business and businesses need to make money, but let clients know that their concerns and wishes matter.  Don't forget you’re dealing with people’s lives.  People just like you. 



Saturday, June 1, 2013

A NOT SO HAPPY CAMPER

With Memorial Day being the unofficial beginning of summer, many children will be heading off to camp.  From the ages of eight to approximately eighteen, I was no different.  I attended Camp Daniel Boone.  It was located near St. Charles, Missouri.

I went to camp with two of my friends.  I remember getting on the bus and not wanting to go.  You see, I never liked to be away from home.  Mom always thought that if I went with friends, I would have a good time.  And, she was right.  The problem was the camp director thought it would be a good idea for me to make new friends.  More often than not, I was put in a cabin with people I didn't know.  I only got to see my friends at meal time and sometimes during the evening programs. I was very unhappy and homesick.  The camp director would end up calling my parents to pick me up.  One time, insisting that my father come pick me up at night.  He didn't.

The years when I was placed in a cabin with my friends, I had a great time.  I just needed to be around people I knew.  I was (and still am) shy.  Shouldn't the camp director's focus been on making my experience at camp a happy one?  I could have made new friends while being with people I knew. 

My camp experience wasn't all bad.  I enjoyed swimming.  Even though I couldn't swim on my own, it was at camp that I used water wings instead of a plastic ring to swim.  What a feeling of freedom they gave me! I enjoyed making crafts too.  It didn't matter that I wasn't very good; I still enjoyed trying to make whatever the craft was.

When you're a child, adults always think they know what's best for you.  When you are a child with a disability, adults really think they know what's best for you. You can't force a child to make friends.  Maybe some children can adapt to being with people they’ve never met, I couldn't.  I wish the director of the camp had just allowed me to be with my friends every year.  I wish he would have been more I concerned about whether I was having fun, rather than being concerned about my making new friends. If fun had been his priority, I would have stayed the entire session every year. I would have been a much happier camper.
  


Tuesday, May 28, 2013

TOO PERSONAL

One of my caregivers may be replaced.  I’d hate to see that happen because I know everyone needs a job.  I care about everyone who works for me.

I was going to blog about the situation, but then, I mentioned it to someone and they told me I probably shouldn't because it was a personal situation.  The caregiver has a side too.  They could take issue with what I wrote.  I didn't want to upset anyone, so I agreed.

Then, I began thinking (again) about what the purpose of my writing this blog is. I have always said its purpose is to inform, educate and to make people think. I want to give readers a glimpse into my life.  You may think you know what it’s like to live with a disability.  But, if it hasn't happened to you, you have no idea.

This blog has to be about my personal experiences if readers are to get a clear picture of the problems and issues a disabled person faces.  If I begin to censor myself, this blog serves no purpose.  It would become a blog about the routine aspects of my life.   Going to the library, playing Word Tornado on Facebook, watching TV and reading.  One post on these subjects might be okay, but if that was the main focus of this blog, after awhile, I'm sure you'd get as tired of reading it as I would of writing it.

I was told recently, by the editor of an online paper that this blog appears in, they appreciated my candor. I am a very open, honest and direct person.

I will continue to be as open and honest as I can in my posts. That's the only way I know how to be.

Tuesday, May 21, 2013

MAKING THE MOST OF EVERY DAY

My Maltese, Lucie, is almost fourteen years old and her heart is failing.  I have blogged about Lucie before. http://confessionsofadisableddiva.blogspot.com/2012/07/for-love-of-lucie.html  Anyone who knows me is well aware how much Lucie means to me.  I would do just about anything for her.

Lucie has had a cough for several weeks.  Last week, a visit to the vet revealed that she has congestive heart failure.  Lucie is now on two different medications.  She seems to be doing well.  She doesn't cough much anymore and her breathing is better. She is back to her old self, barking, begging for food and taking naps.  She even runs once in a while.

I don't know how long Lucie will be with me. It could be weeks, months or (if I'm lucky) a year or two.  I just know that I will be lost without her.  We have been trough a lot together.  I think I have learned to appreciate her more in the past week.  I guess I took her for granted.  The same way we sometimes take the important people in our lives for granted. 

My mom was on Hospice the last six months of her life.  I did my best to see that she got the best care. I tried to keep things as normal as possible.  We didn't talk much about dying.  We focused on her life and living. I wanted my mom to still find joy and happiness in her life. In spite of what her reality was, I tried to give her hope.

I am doing much the same now with Lucie.  I don't think about her dying.  I see that she gets what she needs and is happy.  My mom was worried about two things: what would happen to me and what would happen to Lucie.  I promised her I would keep Lucie with me. 

Lucie gave my mom and me so much love. She continues to give me love and affection daily. I  have said before she's not just a dog, she's part of my family.  For however long we are together, I  will make the most of every day.












  












































Thursday, May 9, 2013

A LESSON LEARNED

My brother is always telling me that because I have a disability there will always be people who will try to take advantage of me.  Something happened this week that made me realize how true that statement is.

I needed someone to cut my lawn.  I did not know who to ask.  Two young men were cutting a neighbor's grass and asked if I needed someone to cut mine.  I refused, at first, because I didn't know them, but with  my grass growing higher, because of all the rain we've had, I finally made an appointment for them to come.  They quoted me one price, but then said because my grass was so high, they'd have to charge me more.  I paid them, they did the work.  Everything was fine. 

Five days later there was a message on my answering machine from them asking if they could come cut my grass again.  In the five days since the two young men had cut my grass, the neighbor who had been doing my yard work, said he'd continue to work for me.  So, the call on my answering machine, was deleted.  I thought if they didn't hear from me that would be the end of it.  I was wrong.

The next morning I received a call from the one young man.  He asked if they could come cut my grass.  When I explained my neighbor was going  to do it  the young man asked if they could cut my grass one last time as they were trying to start a lawn care business and would really appreciate it.  Wanting to help them and knowing how hard it is to get a new business going, I said they could cut my grass one last time.

When they arrived they asked for the money because they needed to get gas for the lawn mower.  I gave it to them. They assured me they'd be back.   I'm sure you can guess what happened.  They took my money and never returned.  I called them,  my caregiver called them. They assured my caregiver they'd be back.  The police told me it was a civil matter and there was nothing they could do.  The one young man hung up on the officer, who came to my house, when he called their cell phone number.

I guess this story makes me sound naive and foolish.  I guess I was.  I am guilty of wanting to help two young people. For that, I got my money taken.  This entire experience has made me very cynical and distrustful of people.  It will be a long time before I  help someone again. That's sad because I always try to see the good in people. I will only deal with people I know well from now on or people who have been referred to me by someone I know..

I have to wonder how many other elderly or disabled people those young men have taken advantage of.  I hope someday the disabled and elderly won't be viewed as easy targets by people.  I would like to ask the young men if they are proud of what they did.  Just remember what goes around comes around.  God knows what you did.