Wow Everything is messed up today

Everything is messed up today.  My computer crashed with a disk error even though I ran a Crap cleaner program and a registry error program.  I tried to order pads for my bed and the order did not go through. I tried to play a song on my computer but the sound that come out was horrible.  I am getting hungry but need to finish this before I eat dinner because I don't have much time left before the care provider leaves today.  Someone found spelling errors on my new web page.  (how emberrassing!)  And I have already had some business publication solicit me for money.  I have only been up a few days!

My goal with this blog was to be thought provoking and give anyone who wanted to read it some idea that life is really not that different for me than is is for anyone else.  I wanted to bring in more information on disability issues too.  I have been so focused on the things going on in my own life that I am not doing enough of that.  I have found some disability news papers and need to do more research.  As issues come up I will post comments and links.  I have a video to post on here.  I think is hilarious and says a lot in a short amount of time.  I am not sure it posts on this site.  But the link is Behavior analyst vs staff.  I will try to actually post the video.  Please be aware of a lot of four letter words. Please note I did not create this video. Someone sent it to me on Facebook.  I  just think it's funny and true.  Later all.

One day out.

I saved up some money today to take my care provider to lunch.It is her birthday.  The restaurant we wanted to go to was closed today.  We tried a second restaurant that was closed too.  Finally we picked a restaurant and called there to make sure it was open.  This third place was not either of our favorite places, but we dealt with it.  That's the thing about life you just have to deal with it.  My friend used to say to me "You know what they say.  Pull up your big girl panties and deal with it."  I have a T shirt that says that.  My friend bought me a plaque that says that.  One day I saw a catalog that has a plaque that said "If I pull up my big girl panties and deal with it one more time, the elastic is going to break and someone is going to see my A&%".  That's a plaque I want to get. It's how I feel about life right now.

I tried to forget about my own problems and issues.  I really wanted to enjoy something.  As you probably guessed, it did not work out the way I planned.  My anxieties are way up. I never sleep well anymore.  Everyone I know is praying for me to resolve this and I just have the feeling God isn't listening.  What's that story we hear?  Some adult prays for something like a new job or new car whatever.  The thing that was prayed for never happens.  The parent says to the child "God didn't answer my prayer."  The child says "Yes he did! he just said NO!"  God please don't say no to me on the house issue.  If the blogs I follow are listed on this blog, I did find a blog on anxiety issues.  Also I think this web site had some interesting stuff. 

Anxiety info  Might help you figure out if you have some anxiety issues and how to treat them.  Me I have an appointment with a counselor  the first week of June and it can't come too soon for me.  We will talk later.

Another Working day

I figured something out today.  I would like a job where I could be creative.  My best jobs might be a movie critic.  Maybe a freelance writer.  Maybe I could be the person you go to to write your speeches or create your presentations for you.  I am awfully comfortable with PowerPoint.  I do tend to like my jobs better when they are different everyday.  When they are the same old stuff day in and day out it gets boring.  I also love disability culture.  I love talking about the sappy disability movies and the good ones.  I love the whole Inspirational book thing.  I don't want to be the inspirational cripple because I don't think I should get pats on the back for trying to have a life.  But I can see how people get hope from these books.  Let us remember I have my heroes too.  Though Lincoln Rhyme is fictional, I aspire to have a great mind like him and do what I love too.

I wish I could write about the disability issues that go on around here.  The problem is not much goes on around here.  Near Baltimore and DC I hear of protests or see an occasional newspaper article.  But here not much goes on.  People with disabilities are even afraid to take fixed route buses.  At least the people I have talked to are.  When I worked as an advocate, I did a survey for people living in group homes or Living units. (sorry about the jargon)  We found that people with disabilities living in these home seemed disconnected from the community.  I think there may be a few reasons for this.

• Who wants to be connected to the community if you get stared at, laughed at, and or bullied while you are out.
• Most people living in these homes don't have a lot of control over their lives.  That means the care provider or someone else is setting up the outing.  If you had no say in it, why put forth the effort.
• People with disabilities do not have much money.  No money It's hard to go places.
• They are just as tired when they get done with their jobs as the everyone else is.  Its easiest to sit home and watch TV.

I remember speaking to a gentleman with downs syndrome who had a problem making his speech understandable.  I did understand this though.  He saw his friend at work 5 days a week. The only time he saw him outside of work was at his birthday party. and very clearly I understood this: "And that's only once a year"   Wouldn't it be neat to have a position like a state funded recreational coordinator.  When an individual with a disability would be involved in creating his yearly plan, the question of recreation would be a part of that plan.  If that person prefers to have friends come visit him, the coordinator would try to make that happen. If he prefers to be out The coordinator would do that too.  Ah to dream the impossible dream.

That being said I had a really bad night last night.  I did not go to bed until almost 3 am.  And I still could not sleep.  I know a lot of it is stress but goodness.  I have been up most of the day. My rear end is wearing out.  I need a new chair and seat.  I was working so hard to get a linked in profile up.  And a web page that has some info about me and some basic rates for speeches etc.  I also did the blog.  I'm going to bed a bit earlier tonight.  Night everyone see ya later.

It was a working day today.

I spent most of the day working today.  I built the first page to a basic web site that will hopefully get me more noticed as a public speaker and an advocate.  Joana's Place Is my new fairly basic web site so far.  I expect to add things as I get going so updates will hopefully happen often.  This web site costs money but not too much plus its a 30 day free trial so I can see if this actually helps anything.  I will probably not make enough money to live off making speeches and things.  I love to sing but there is a big difference between singing for money and singing for fun.  Same goes here.  So I still have to pound the pavement looking for work. 

I also added a donate button to this blog.  Strictly voluntary of course.  And any monies are appreciated.  I have begun a new linkedin profile.  Linkedin is an Internet networking site for professionals.  There is even a group on there I have asked to join that are people with disabilities trying not to allow their disabilities keep them from developing professional careers.  That is right up my alley.  I will also apply for a few jobs I saw and try for some legit work at home ones as well.  I have looked at the time and its 200 am so I am going to finish this blog and do more work tomorrow. 

I finished The Twelfth Card  Which was really good.  The usual page turner.  The next book in the series is The Cold Moon.  I actually think I read this before but it has been long enough I could read it again.  I will let you know what I think.  I must also write the government tomorrow and make sure I have not left any stone un turned.  I am tired of this mess.  Anyway good night and take care.

Torn

Physically I may not seem very active.  I used to be an athlete but now not much.  I got too caught up in competition.  The push to be better.  I put it over injury, illness, everything.  I get that drive when I work too.  My problem is I get bored with the same thing day in and day out.  That's another reason why I like the idea of being a consultant and a public speaker.  It would always be different because people are always different.  I can talk about stereotyping people with disabilities all day. Show the same movies use the same words and it would still be different.  The responses would be different. Any questions would always be presented in a new way. 

I am torn because I need a job.  I need to make money.  I need to fight for my home.  I want to really work on the writing  and the public speaking stuff.  Is there a way I can do both?  My care provider's taking the day off on Saturday because Monday is her birthday and she wants Saturday off to celebrate.  I can transfer on my own again so if she takes off a day or two It shouldn't bother me. This weekend I plan to work on the public speaking web site,  Of course keep up with the blog, begin letter writing to the Governor or the state about the house issue, And maybe even write a bit in the children's book I have been writing for about a year now.  I thought about it for two or three years before I wrote it.  I am not as prolific as I'd like to be.  I wish some of the bigger issues in my life (job and home ) would be settled so I could deal with the other issues (building back my reputation and making a name for myself)  I have always told people when I work with them "one thing at a time.  Home and job are priority. (in that order.)  I just have to do what I can do and pray that I can handle what comes.

Independance

In the past few days I have had a few people call or stop and ask how things are going with Epilepsy?  As people might remember, Epilepsy Association of the Eastern Shore are the people that help support me within my community.  I am in a category called Community Supported Living Arrangement or CSLA.  Based on the questions I have been getting I can only assume that people expected me to get upset with Epilepsy and ask to be taken off their care.  Why?  My case manager and I understand each other.  This is my home. (at least for now)  It is my space and I make the rules in my life.  Don't get me wrong I did have to give up some freedom.  I eat early and go to bed early.  No major parties for me.  I have to make sure my schedule fits  the care provider's schedule.(That I am home when she is here. and all)  But the trade off makes sense to me.  If I need help I have to make sure to be here to receive it.  Her help helps me a lot.  I also trust her company.  I am proud of who I chose to work with me.  That is the biggest thing.  People need people around them they can trust.   Even if you don't have a disability.  So choose the people who are close to you wisely.  Especially if they have a say in your well being.  I knew this care provider would be OK when she was talking to the four legged children the way I do.  She also talks to the TV like I do.  Her religion is not shoved down my throat,  and she is funny.  My case manager is a good ol boy.  Very nice.  He asked to meet me before we set up anything and we got to know each other.  Get my biggest theme running through any class I teach and anything I do.  DON'T PUT ME IN A BOX. DON'T ASSUME YOU KNOW ME FROM A PIECE OF PAPER OR PICTURE! DON'T MAKE QUICK JUDGEMENTS.  Get to know me I'm a good person who happens to be struggling right now.  Like a lot of people.  Keep me in your thoughts and prayers.  You are in mine.  Take care

Not much to say

Most days I am full of things to say.  Always ready to stand up for a cause.  Always ready to find info to help someone or tell them what calls to make.  Today I got nothing.  I am even a bit ambivalent about the Glee finale last night.  It was OK.  I loved when they met Patti Lupone and she told Rachael and Finn to never give up.  I loved the R word commercial with the actors who play Becky and Sue.  I hated the original songs.  I hated the fact they did not place at nationals.  I am also fighting a bout of what I think is Irritable Bowel Syndrome or IBS.  This means I really don't want to go anywhere or do anything.  I did do my bi monthly run to the dollar store to get the basics.  So today I am just going through the motions and thinking of happier days. 

My friend told me I can't see how I affect people because I am so frustrated.  He is probably right.  He told me that I should keep inspiring.  But do I want to be what I called "the inspirational cripple"?  We see it in all the movies and all the news stories.  I get so tired of those.  What I would like to do is to get people to think.  Why am I not getting this job?  Is it because I am not the best qualified? Or is it because I have a disability?  What does the answer mean for you or for me?  Is your instinct to turn away?  Or are you interested in really knowing me?  Can we date?  Fall in love?

Is fighting for what I want in life an inspiration?  It might be if it makes you do the same.  I look at my outreach and speeches as a small way to start thinking.  If  we think about why we do things or say things that are destructive, maybe we won't do or say these things.  Think about how we use or used to use the "r" word.  People are really thinking about it now.  Will it change things?  I don't know.  I have at least 1 person I know who hated that word.  I bet it makes her feel a bit better.  If I inspire you to action go for it!  If your just bored.  I understand.  Sometimes I am too.  Take Care

Doctor Visit

 

I had to go to the doctor today.  I hate doctor's offices.  I actually go a clinic called Three Lower Counties adult medicine.  Though I have had no problem with TLC,  I think one has to be aware that places such as these often miss things.  I call it a "treat em and street em place"  You come in, you get seen, they give any meds you need, they check you out to make sure you are still alive, then they send ya home.  I like places like this sometimes because you basically get whatever you come for that day.  Need asthma treated? We will listen to you.  Got a cold? We will give you cough medicine.  Need a band aid we have one.  It's a decent though lack luster way of dealing with people with crappy and no insurance.  Most People with Medicaid or PAC are in this group.  Be careful here though.  You need to be a good advocate here or have a good advocate.  If they are not getting a symptom correct, keep talking.  Remember treat em and street em often misses stuff.

I also don't think these clinics are good if you have complicated medical conditions.  I have a friend who goes to TLC.  But she has a rare condition.  Her condition is called Addison's Disease.  She has a rare form and even though she can walk, she is much more disabled than I.  Everyone who knows her is frustrated by her treatment.  In some cases we feel their lack of knowledge of this disease will cause her to die much sooner than she would have without treatment.  Her body does not make an essential hormone.  We all need this hormone to stay alive.  The man made version of this hormone is not the same as what our bodies make but its the closest we have.  She is in constant pain and has a pharmacy full of pain killers at home.  Yet when she goes to a hospital she is never given doses of the hormone or the pain killers high enough.  TLC is not legally allowed to write prescriptions for this level of pain management.  And pain management places kick her out for taking too much.  Yet if she stays in pain she will use up all of that hormone and die.  Infections are dire.  Even small ones could kill her.  She cannot maintain any job or any amount of stress.  Yet she has to go to a place that sees too may people to give her the individualized care she needs. 

I'm glad I'm just run of the mill CP with a few minor secondary conditions.  Anyway take care and speak up!

Diversions

There are several things I am doing right now to try to keep my mind off of the impending doom of homelessness.  I listen to music. (we discussed who in a recent blog) I do cross stitch when I feel like it. I watch movies. (Mostly feel good love stories) I read, and I watch TV.  One of the shows I have learned to love is GLEE.  I must admit, I watched 1 episode in season 1 and thought it was one of  the dumbest shows I had ever seen.  Yes it has people with two different disabilities in it as well as a gay character.  Something I had never seen in other shows.  But in my old school choir never got slushed.  We were good.  Why the big deal?  I could see why some teenagers might like it.  But I am over 40.  It was the heavy set girl Lauren Zizes and Noah Puckerman did it for me.  I have been hooked since then.  It was the valentine's day episode when Noah realizes he loves Lauren a"whole lotta woman" that gets me.  I laughed my butt off when he sings Queen's Fat Bottom Girls.  I also absolutely loved their song.  Losers Like Me.    So in a total diversion from real life I wish for Sam and his family (and me) to get back on their feet. May Kurt find a place where he will be accepted.  I hope Artie, Brittany, and Santana work out their weird love triangle thing, and Rachel, Finn and Quinn chill out.  Oh and Mercedes, you need some of your own story lines.  And the Bully Kerofsky, Find some peace, come out when you are ready.

I also happen to love Lincoln Rhyme novels.  I have it in my head that I will read all of the Lincoln Rhyme novels that Jeffery Deaver writes.  I have read 4 or 5 of them already.  You may know The Bone Collector, The Empty Chair, and the Coffin Dancer. I am currently reading The Twelfth Card. If you don't know the Lincoln Rhyme Novels I think you should.  Lincoln Rhyme is a forensics expert. (like CSI) While investigating a crime scene, a mine shaft collapsed and a piece of board broke his neck.  Now he is a quad.  He is unable to move anything but his head, neck and 1 finger.  Because he is so brilliant, the NY PD still uses him in their most difficult cases.  With his girlfriend and sidekick,  Detective Amelia Sacs, they solve crimes together.  The best part is how they investigate crime scenes.  She goes as the investigator, with a pair of head phones on that connect to Lincoln Rhyme via phone.  I wonder if they will ever investigate using a web cam or skype?  Anyway how's that for ADA compliance.  This new book is good.  There is a killer after a 16 year old high school student.  No one knows why?  He has already Killed 1 and shot an innocent bystander to create a diversion.  He also pushed a girl under a bus to create another when the cops were too close.  I'll keep you posted.  I find all the Lincoln Rhyme novels great page turners if anyone is interested.  Take Care

Friends

I have some really good friends.  I may not speak to them on a daily basis but I do have them.  Most of them are local.  But I have a few friends that are scattered all over the country.  I have a few more around the world.  I like that about myself.  I am a friendly person who is capable of making friends from anywhere.  I was recently feeling sad and depressed at my lack of job and possibly lack of home, that I posted on Facebook that I felt like a failure.  I got a post from an acquaintance "No one is a failure." Everyone has a reason for being here and the world needs intelligent people like me."  The words were nice and they helped.

But the real surprise came from someone I was once in love with.  This old friend was never a lover or sweet heart of any kind except in my head.  Several years ago, he and I worked together.  I the athlete, he the coach.  After being together for four or five years, he broke my heart by telling me his a promotion at his job made it impossible for him to coach me any longer.   Angry and hurt I left never to return.  He eventually left that job and went on to be successful at other jobs.  He is now married with children of his own.  Eventually we got back on speaking terms.  We chat every once in a while through E mail and Facebook posts.  He replied to my failure post.  I sent him an update of me via E mail.  I will not post his reply on such a public page but the gist of it was:

• I am actually not a failure.  I do a lot and Ive no idea how what I do affects people.
• I have been through a lot Dad's death, still in home, accidents, robberies and muggings, crazy roommates and I am still here.
• I am not afraid to be alone, to speak my mind, and to fight for change.
• I am letting my frustration cloud my vision. Something good will come my way.
• Keep inspiring

Though the inspirational cripple is a stereotype I try to avoid, his words made me cry.  (In a good way)  Now you see why I once loved him so much. I honestly feel he meant that not as a generalization but as a that's why you are special and why YOU WILL SUCCEED. His existence is also the reason why I won't settle for some idiot who thinks sweet words about how pretty I am and how lonely I must be will get me to open my legs and maybe my wallet or my home.  I know everyone is unique but there has to be someone out there who will talk to me with respect and caring like he does. Maybe this next guy will even love me too.  Anyway Here's to all my friends.  I love you and thanks.

Who's life is it anyway?

I used to talk to people with intellectual disabilities about getting what they want out of life.  We would call this self advocacy and self determination.  Self advocacy is asking for what you want.  Self determination id doing what YOU need to do to get what you want.  So if you want a job for example, you are willing to send in the resumes, go to the interviews, talk to whoever to get what you want.  I'd like to get a job, keep my home, and find a significant other. 

The problem with living a self determined lifestyle is that a lot of this is beyond your control.  I can't make the mortgage company work with me.  I can't make some one hire me and I definitely can't make some one love me.  (I have actually thought I could  at times.)  That's the problem.  Often there are stereotypes attached to people with disabilities.  This keeps people from really giving you a chance.  And people with disabilities can believe these stereotypes themselves.  If you hear no you can't everyday for most of your life you begin to believe it.   If your disability is not a birth defect, you understand some of the stereotypes that come along with a disability.  You may even have believed a few.  This will definitely affect the way you function as a person with a different body.

People with disabilities can often see things in an unrealistic way.  You can't always get help for everything.  One job doesn't always lead to the next, and no matter what life costs.  It costs money.  It costs in emotions.  It can even cost in health and well being.  Everyone has bumps in the road of life.  I'm going over a mountain at the moment. I hoping that there is a golden safe place on the other side.  If you have live a self determined life, disability or not, there will be peaks valleys hills and mountains in them too.  Try doing what I said in the last blog.  Get any and all support together.  They make the good times better.  They make the bad times bearable.  My mistakes lead me to this bad place in my life.  I hope my actions get me out.  If not,  I will be changed.  I am honestly not sure if the change will be good or bad.  We will see. If you have a disability, set goals and work towards them.  It really is the only way to live. Just realize no one gets Everything they want without giving up something else.

Life and lemons

When life gives you lemons make lemonade.  How many times have we heard this?  I have tried to adhere to this policy.  There is always another way.  There is always another side.  There is always another letter to write for your cause.  But can life give you so many lemons you drown in lemonade?  sometimes it feels like that.  I have been fighting to keep my home for over a year now.In fact, It's getting close to two years.  I have just gotten notice that I have been turned down for the program I keep hearing I'm a shoe in for.  I have hurt my foot. (it is getting better) and I still have no job.  Lemons are all over the place. As your head spins through this process what do you do?

1. Decide how far you want to go to fight this.(My home contributes to my quality of life so I will fight as far and as hard as I can.
2. Rally the troops. -I called my attorney who is helping me with this.  He says they are wrong.  I agree now what do we do about it.
3. Prepare for any scenario-  Just in case I loose my home I contacted my case manager who will be on the lookout for emergency housing and hopefully help me find homes for the four legged children.
4. Try not to blame yourself.  (My Mom will blame me enough for both of us) Seriously, there are many people going through this and many people have gone through this.  They are not bad people they made bad choices.  Same for me.  (This is the hardest for me.  Losing one's home is big)
5. Life has to keep going.  Life never stopped for you before.  Its not going to do it now.  I am still me.  I have good friends and people who care.

I say this to myself everyday.  This doesn't mean I won't cry, scream and hurt.  I grew up here.  I created this life with me and the care provider, the housemates and the four legged children.  My heart WILL BREAK there is no doubt.  This loss if it happens will be huge.  But with help and support my heart will grow back I hope.  Any thoughts are helpful I don't want to drown in lemonade.  Take care

What to do with frustration?

Like most people with disabilities, I have a lot of frustration in me.  I always said to say that I am frustrated is the understatement of the century.  I spend most nights awake worrying about fiances, and being of use in this world.  To let these feelings build up is not good and can often lead to health issues such as depression, chronic high blood pressure,and other issues.  So obviously these feelings must be expressed.  Here are some ways I find to deal with my issues.

1. Exercise- I used to swim but any aerobic activity can help expend energy.  Often this will help you think through feelings and deal with them.
2. Sing or scream-  hard rock music turned up can help you use your voice to expel energy.  I always liked women singers like Pat Benatar, Allainis Morrisette, Melissa Etheridge, and now Pink to help me deal.
3. Art- Paint pictures or create something that represents your frustration.  One movie I saw had a can worry wall.  I like the idea of a soft pillow or object that you can throw or hit without hurting yourself or anyone else.
4. Talk to a professional- For me a good counselor has been a huge help.  Sometimes they can help you reason things out.  A fresh impartial mind can give a different perspective.  Also sometimes medication prescribed to deal with the anxious feelings
5. Write a blog with about your feelings- Nothing more to say
6. Take action-  From writing letters to taking classes to develop skills to full scale protests.  Expressing what frustrates you to officials may change things and make them better.  many non profits and laws have been changed because someone got frustrated and angry.

Remember the best quote in the Jumping the Broom movie.  "Life is like a disco.  No matter how the music changes, you just keep dancing"

Dr Phil

I got the chance to watch the Dr. Phil show today.  I wanted to watch it because the show had on someone who claimed to be a bully.  Pretty much everyone was a target of her bullying.  But she claimed to bully people with disabilities because they made her feel "uncomfortable".  some of this bullying got physical when it was brought out that she hit her cousin who has a developmental disability. 

Abuse of people with disabilities is quite common.  An article on disaboom.com says that women with disabilities are twice as likely to experience domestic abuse than women without disabilities.  Articles about abuse of disabled are all over the Internet.  The general reaction when people hear about these issues is shock and horror.

So why is it so common?  I think the Dr. Phil show touched on this a bit.  In this lady's case the fact that people with disabilities made her uncomfortable caused her to hit them, avoid them and do such things as always parking in spaces for the disabled.  This way she could avoid dealing with them.  In the end of course, this lady had other things going on in her life that made her fight and avoid pretty much everyone.  After the end of the show I was both angry with this person and felt sorry for her.  To fight or avoid everyone is both impossible and exhausting. 

The scary part is I am beginning to think more of society is like her than we think.  At least with people with disabilities they are.  If hiring you for a job makes someone feel uncomfortable don't do it.  If you don't want to date someone with a disability, don't do it.  If you are uncomfortable and afraid than avoid us.  Can't we find a happy medium?  I don't want to make anyone feel like they should avoid me, but if you really don't want to be around me don't be.  Except we all live in a society.  ALL OF US. Disabled and non, White Black Hispanic Asian men and women and so on.  I'd like to get to a place where everybody can try to be happy and productive regardless of these issues.  Wouldn't that be a win win situation for all of us?

This Sunday

these are the four letter words I said today

I had a bit of a sad day today.  I still need help getting out of bed.  I have less pain than i did, but I am unsure about my transfers.  I am playing games on Facebook and enjoying the passing time when I get an invitation to chat from a guy who has been asking me to be with him (Date him and marry him) after 1 picture and 1 conversation.  I have asked him several times to back off.  He says he will but then starts it all over again. He wants to meet me, he wants to marry me, he thinks I'm sexy.  (There is only 1 picture of me on Facebook.  No make-up and wild hair. Yeah real sexy. ) No matter what I say this guy will not back off.  Every time I am on Facebook he is there.  I finally had to de-friend him and block him.

The whole concept of de-friending some one bothers me. Why would you wanna NOT be some one's friend?  In this day and age, and with cyber bullying and harassment being an issue,  action had to be taken to get rid of this fellow.  Looking back at some of our one sided conversations, I believe this is all a big joke to him.  The more uncomfortable he makes me, the more he likes it.  He thinks it's funny to see me freak out because I don't like it when men come on too strong.  If this is the case, this man does not want to be my friend and I am better off rid of him.

The really sad part of this is this man is supposed to be an adult.  If he would have tried to be my friend maybe we could have been friends but obviously that's not what he wants.  We always hear of online dating,The romantic side of us wants to hear all the great positive stories.  It's a shame that stories like this get me just a little more jaded.

Family Day

It's a rainy drippy day today.  Most of the time I hate days like today.  But not today.  Today all four legged children are safe and happy.  I have shown pictures before but let me introduce you to them.  First picture is Pepper.  The dark one.  My soldier and a bit of a bully.  He is actually sleeping on my steel footrests (He looks comfortable but Wow.  The gold cat in the middle is Fat Boy.  Hes my love bug.  He loves being kissed and cuddled. The cat on the bottom is Minnie.  The princess.  She is also Fat Boy's Mom but they don't get along.  They can be in the same room but that's about it.  Pepper and Minnie don't get along either.  For the longest time after Minnie's kittens were weaned Pepper chased her away.  I wouldn't see her for days.

For months I tried different things, Pepper got sprayed with so much water I thought he was gonna drown.  Cat nip worked but I didn't want high cats all the time.  Finally a combination of salt water spray, a schedule, and Temptations cat treats seems to work.  Minnie knows I get up about 10:30 11 am.  So after I get cleaned up, I go get Minnie. She waits down the street.  Pepper gets temptations treats, and gets closed in his room.  Minnie usually comes when I call and follows me home.  She gets the same treats as Pepper and eventually settles in my room to sleep hidden in my clothes.  Fat boy usually checks in around 2 pm and gets loved on.  He can take or leave the treats. 

The other day I did a bad thing.  I went to the local Walmart and got what I thought was a different set of Cat treats.  Come to find out it's wet Cat food.  Pepper hates it. Minnie will eat anything.  Fat Boy will too.  But I did a quick run to the dollar store and got the right treats.  Pepper was happy.  They have me well trained.  Boring day.  But I am getting ready to start a Rummy game with my care provider.  Wish me luck.



In limbo

Ive had a bad couple of days with my foot and life stresses.  My foot seems to stay in pain.  This may be due to weather changes.  It may be due to whatever is injured there.  It may be some combination of both.  I take Vicoden at night and try to cut the Motrin because I am afraid that I will have stomach trouble from taking so many pain killers.  I think I let the pain go too long before I medicate it.  Anyway, while I have been injured I have been depending on friends and family to help me when my care provider is not scheduled to be there.  Most of it is just on Sunday.  My brother has come over in the early afternoon to make sure I can get up,  My Choir friend has offered to come in the evening to help me get to bed.  In the event that one cant come,  The other one will come and help make sure I am comfortable in bed for one day until my care provider comes in the morning. 



Reason to smile Four legged child Pepper


When I was setting this up, I had to tell my friend what happened and why I needed her help.  SHE ZAPPED.  She was worried about what happens at night when the care provider is not there.  I reminded her I had a Medical alert button on my wrist like this one.

That did not help her.  she said what happens if you wanna get up fore a coke?  Well the answer is I never get up for a coke.  I hate to drink too late at night.  It gives me heartburn and keeps me awake plus I worry that I will have to go to the bathroom all night.  I have a urinal for night time anyway.  I love this person. She is like family to me.  But sometimes she reminds me that she truly does not have a clue what it's like to be disabled.  I tried to explain to her that we set things up at night so I won't have to get up   and down a lot.  This can include a drink, whatever cross stitch program I happen to be doing, any remote controls, a reacher, and a phone.  If all that is set up, I don't need to ask for help.  I do have housemates if I really need help.  I hope one day I can get people to understand it's not always about what is comfortable.  Even when I can get up as many times as I might like, It doesn't mean I do get up.   I'm not trying to be lazy either.  The more often I get up the more likely I am to fall or get stuck.  In any new situation you try to weigh your options and do what you think is best for you.  I love having my own time and my own space even If its at night.  We really are just like everyone else ya know.

Escape

I tried to post this yesterday but it didn't work.  I had a big stress brain lapse yesterday.  When I get stressed out, I dream about traveling.  My most favorite place to go in my head or for real is NY City.   I love the hustle and bustle of it.  The shows, the fashion and all the street vendors.  I just don't have the money to go.  I have also dreamed about taking a cruise to New England.  I had started to save up the money for one but I lost my job and had to use the money for other things.

During a time like this local trips can help.  I am planning to take a trip to my local beach.  It's about 1/2 hour from where I live and it's an easy local bus trip.  I like to go when I can but I think about getting in the water.  I'd like to get a chair, stick it in the sand near the shore line and let the waves hit me.  What I really need is a chair like this. 

This is a beach wheelchair that sits really low to the ground and may be low enough to get me a bit wet.  There are lots of different types of  beach chairs. Some sit high.   Some sit low.  Some are even motorized.  This particular one costs about 1200 dollars.  Not bad as chairs go.  But still too much for me.  Oh well I'll put it on my fantasy shopping list just like my fantasy trips. 

Wow Transit

Transit ADA, transportation in non-urban areas: Investigating the impact of the Americans with Disabilities Act on rural transit systems


I have plans with my friend and care provider to eat lunch, and check out some local stores.  In order to do this I have to arrange transit for this trip.  This means that I needed to call them by noon today.  I could take fixed route service.  Most of the time I don't mind taking fixed route, but I hate taking it to strip mall type areas we are going to here.  The reason why is more than one bus goes there.  Often it gets confusing to figure out which bus is yours.  The bus drivers are supposed to announce what route they are driving often they don't. 


Local transit is not bad, Just a bit naive.  Transit runs on grants mostly.  There are three or four grants transit uses.  This is supposed to cover three counties.  The grants are usually geared toward getting people to work.  This means that transit runs 6 am to 630 pm.  Here lies my problem with transit.  I can't seem to get rides to do anything fun.  Even fixed route stops at 630.  So if i were working I would have to take the day off just to have some fun?  Not to mention the fact that I can't go anywhere at night.  Transit serves more than just people with disabilities.  It serves anyone without a car.  It also serves the elderly and working poor within our community.  As transit looks to improve, I think they need to expand to allow more access to the community.  They should have accessible rides to the local civic centers and community venues in our three counties, and local access to the baseball stadium when there are home games or when there are shows going on there.

As I said before I am part of the board for transit.  I have put a bug in their ear about this.  In the age of flat funding and high gas prices, nothing will be done right now.

uncertainty

I had a good day so far today .  I was able to get out of bed with the use of a gait belt just like this one above.  With the help of my care provider,  I was able to safely transfer from bed to wheelchair without use of the transfer board.  I have a hard time using transfer boards.  They are good for when you need them but they can also get in the way.  The fact that I can see the day where I can transfer without assistance again is a great relief.

What I am most struggling with today is how to promote myself.  This has been a big problem for me for most of my life.  It is probably part of the reason why I don't always acheive what I want.  Im not sure why but some web sites are advertising me writing a blog for them.  All for free of course.  But is writing four or five different blogs the way to go here.  Don't get me wrong I LOVE writing this blog.  Its thereputic.  Even if I don't get money from it, I'd like to keep doing it if I can.  But I am also starting anotherone on a site for people with disabilities called Disaboom.  I have been on this web site before.  It has some interesting stuff.  So I figure if I write a blog here too.  I reach out to a more national audience.  But do I just write blogs all day.  Lets face it, most of this is just opinions and thoughts. Does anyone really care what a small town girl with a disability thinks?  But its worth a shot.  Not sure if Ill pick up a third blog.  We will see where theese two go

An update for those interested.

I had a friend post a question on Facebook.  She has a granddaughter who is deaf . She has learnned some sign language.  But adults don't learn as quickly as children do.  She has asked me if I know of anywhere where she can get some sign language instruction for free.  Though I do not know where to go to get free lessons that would be advanced, free sign language lessons are available at lifeprint.com.  There is also a really cool web site I check into from time to time called ASL pro At this web site, someone types in a word or a phrase and a video shows a person signing the word or phrase.  It is a good tool to use to brush up on words or learn somthing new.  Michigan State University has a really nice tool called the ASL Web browser .  You need Quicktime Software for this website.  It's a free download and the website has a link to it.

I love sign language and have had 3 classes in it.  I am by no means an expert.  I do have the opinion that it should be offered at most any school or college for language credit.  Few schools and Universities do this.  I also think if you work in public you should have a working knowlege of it.  It is in fact a language with its own beauty.  (Frankly its a bit more fun to learn than some of the other languages I have dabbled in)  Happy Mother's day to all families and take care. 

PS My foot seems to be on the mend.

Civil rights

I wanted to post this blog a few days ago but other things got in the way.

A few days ago I was watching Oprah.  Most of the time what she says on her show is in the background.  Sometimes there is a big movie star on. or some one with some crazy story. These things are mildly interesting.  This day was different.  It was the 50 year anniversary of the freedom riders.  These people got on buses and went to places to protest the fact that Americans who were black were kept separate and often mistreated by white people.  This segregation was part of accepted laws at the time

This era in history can be quite fascinating to those of us who try to improve the way people with disabilities are thought of and treated.  We model our ways of peaceful protest after this era so whatever I hear about this time is always interesting.

I would love to be involved in a protest march or some major protest that leads to positive change for people with disabilities.  I have been involved with smaller ones.  Positive change for us would be.  More jobs, better access to our community, better transportation, and less trying to box us in to this program or that one.  For me I would not even mind going to jail if the situation came up. There is one major difference between what I am involved in and what they had to do.  I will protest and go to jail.  They could have been killed.  They knew that going in too.  Several people said things like " If I cant live free I'd rather die."  One person told a story about how he was beaten bloody by a member of the racist group the Klu Klux Klan.  The police asked if he the beating victim wanted to press charges.  He said no he did not want to he was not there to make trouble.  Later the beating victim became a senator.  The person who beat him went to his office and apologized.

Because of what these people accomplished, I am able to be a part of peaceful protests without worrying about physical harm coming to me.  As I work for a better life,  I want to think about and thank all those that went before disabled and non who risked everything,  Thank you

Stupidity Continued

Due to my complete stupidity,  I am now rather seriously injured.  None of this is life threatening, but the amount of pain I am in is crazy.  I am on vicoden at night and Motrin during the day.  It all helps, but none of it takes pain away.  A walk to the store that I normally love, causes great pain with every bump on the street or sidewalk.  I now have to use a transfer board like this one to get in and out of bed.   

Thanks to Epilepsy's help, I did make it to the doctor earlier than I thought I would.  I found out things haven't changed too much since the last time I had a limb x-rayed.  It's still hard to x-ray someones feet when they have an orthopedic disability.  Doctor's here really don't understand CP.  And no matter how much explaining and advocating I do, I don't count as much as the x ray films and the paperwork.  They did not see any broken bones in the films.  But my body is acting like there is one.  It's on the bottom of my left heel. My foot stays in pain and often spasms on its own just to remind me how much pain I can really be in.  I am not sure if there is a broken or chipped bone there.  It could just be bruised.  A tendon could be affected.  All I know is I am in pain.  I hate a transfer board and I want it to stop so I can get back to my normal crazy life.

sometimes I am just stupid

I pride myself on my intelligence.  I have an advanced degree, and I have had to find creative solutions to some of my challenges of life.  I have often helped people through their challenges by networking, referring, and providing information with enthusiasm to the same old issues.  Even my education on the stereotyping of people with disabilities is done with humor, sensitivity and its entertaining.  If I am capable of doing all this, why am I so stupid?

Let me tell you what happend.  I was meeting with my job developer on the campus of my old university.  We met and vented our frustration with the job market for about an hour.  Then I had to meet Dr. P across campus to pick up my "thank you" for  speaking to her classes.  On the way to her office, I was riding full speed on the sidewalk.  The sidewalk looked like it sloped down to a curb cut to another sidewalk.  I headed full speed into the curb cut and found out there was no curb cut.  I drove off the curb, the chair landed with 4 of its 6 wheels on 1 side walk and the back 2 wheels on the other.  My left foot was wedged between the sidewalk and the battery case. Three nice college students rushed to my aid.

The students felt I needed a doctor.  I felt I needed a doctor.   In pain and almost in tears, I slowly rode to Dr. P's office.  I told her what happened and that I was not going to the hospital but I would call my doc.  When I called the office receptionist told me to come in ASAP.  The problem is it was 3:30 pm.  I could not get a ride now. With my case manager'shelp, I have a ride tomorrow.

Mother's day is coming.  On this rainy drippy dreary day.  I think about what to do for my mother.  She is different.  She is not from the United States.  She met my dad when he was on vacation from RCA. Her culture doesn't always accept people with disabilities.  In fact they usually give them away to a local charity or church for care.  Mom ran away from me for years.  Some of  this is due to the fact that doctors said I was going to die.  She herself thinks its her fault I was born disabled.  Its her responsibility to care for me.  (Which she really does not do.) And that I am some punishment from God.

As you have probably figured, I don't always get along with my Mom well.  I believe that people with disabilities are people.  Individuals.  To take the blame or pass the buck to someone else does no one any good.  A good parent has a child to raise.  Any child even those of us with disabilities has a right to find happiness in their life.  So what do you get a mom that really doesn't believe in you?  Add to it that you don't have much money to buy with.  Mother's day looks pretty bleak.  With the help of a computer I can be pretty artistic.  I made a card with Hallmark card studio.  Everybody likes home made cards right?  I also put some money in for crafts or whatever.  Not much just whatever I could.  So no flowers or fancy dinner this year mom.  Hope your not too angry. I know you never learned how to deal with me but when I have really needed help, (Like when dad died) You were who was there.  I won't ever forget that.  Love ya Mom.  Hope you like the card.

If you have a child with a disability, raise the child not the medical label.  I know its hard.  I know a child with a disability is not what anyone wants.  Try to accept us.  You are the most important people to do so.  When we look up into your eyes we want to see hope and love.  Not sadness and regret.

Remember your Mom and take care



Is no news really good news?

I have never been one that likes to wait.  In fact I hate it.  I like doing.  I want to live a life I wanna live.  Enough money to live.  Something worth while to do.  And please something for fun.  I also want love.  I have given up on the romantic  part and four legged children are a big blessing for the love that they give.  Because I am not the queen of the world, I try hard to wait at least a while.  Sometimes though that just makes me worry more.  I have been trying to work with people to restructure my mortgage.  This is my second try working with HUD. I tried before with another company that just took my money.   I have all my papers turned in and am awaiting a decision.  This is the worst part.  You as a person have done all you can do.  Your life now depends on someone else?  How do I deal with this?  It's a very scary time.  (Believe me I have my counselor on speed dial.)  What happens if I have to give everything I know and love (My animals ) up?  I honestly don't know if I will survive it.  So I am here like millions of other Americas waiting hoping and praying for a good outcome.  When anxiety gets like this for me, I need to take action.  I need to prepare for the bad news somehow.  So while I'm waiting here for my life to fall apart, I hope and pray and talk to whoever I can to make sure my worst fears don't come true. 

I don't know if self help books help really.  They may just be help you feel better about the fact that your life is a mess.  Sometimes reading and praying are all you can do.  Wish me luck.

PS Four legged child Minnie who can be seen on the right side of my blog came home last night between 2 and 3 in the morning.  Safe and sound and hungry.

The real world

I spent the day out today.  I went to my favorite place to escape, the movies.  I saw Medea's Big Happy Family.  Occasionally I like to go to the local mall to shop. (I got some good bargains but window shopping works too)  I smiled laughed and cried through the movie.  It was a good one.  I had a good dinner.  I also did some shopping.  Our local mall is not the best.  Rents are high for stores so prices can be high too.  The stores don't have a lot for adults.  Seems to me the mall caters to teens.  What is there is good quality.  However, the mall is an easy place to entertain yourself.  It is extremely accessible. The layout is accessible and the local transit makes regular stops there trough the day.  All in all it was a good day.

Then I got home to bills and a four legged child missing.  She has disappeared before.  I am trying not to panic. When she goes away for more than a day,  my heart breaks.  I am afraid I will never see her again.  Pray for her please.  It was still a good day.

clueless

My house mate and I often sit and discuss social issues.  He seems to enjoy my opinions on things.  I really don't think my opinions count for much, but it's nice to be asked.  My house mate has a close family member with a mental illness.  He and his mother are often frustrated about the services he receives.  They seem to worry about their family members' lack of education.  With a better education this person may be able to get a job and better take care of himself. Based on some of the conversations, I have come to the conclusion that people (including me) are basically clueless.

My house mate knows very little about how to advocate.  I have told him a few places to start to go looking.  His relative had a mental illness before the age of 22 so resource coordination for his county may help.  A visit to Division of Rehabilitative Services may also be a place to go.  The only way to help yourself in any situation is to gather information and do something.  That something may be asking for help.  It may be writing a letter.  It may be going to court and letting the law take over.  Every situation is different.  The action should be different for every situation.

I have a deeper issue.  It seems to me that a lot of us (people involved in these issues) get involved with advocacy on some level but don't want to help each other.  A lot of people with disabilities don't think about associating themselves or their group to include people with mental illness because there is a negative label with mental illness.   Almost more so than disability.  Older people don't want to link in with disabled groups because admitting that you need that type of support means admitting that things are changing and you may not be able to do things alone anymore.  There had always been a split among the disability community.  People with physical disabilities do not associate with people with intellectual disabilities.  It perpetuates an old stereotype that says if you have a physical disability, you have a mental one too.  That is not true all the time.

All of these groups should not be afraid to get together and work on whatever issues they have in common first.  The sheer numbers would give power politically.  I also think schools should teach advocacy.  Both for ones self and for whatever group they wish.  There is nothing wrong in developing some one's ability to find out what is available in their community and how to access it.  You never know when you might need it.  I also think that it is not a bad idea to teach kids how to effectively contact their government officials.  It will go a long way in creating good citizens who vote.  Some books listed below are a good start.