There’s Never Too Many Clothes

Upon seeing my closet, most people might assume that I am a clothes horse. I will admit that the closet is near the bursting point. However, that doesn’t necessarily mean I’m off clothes shopping every chance I get. Sadly, I haven’t the money nor the time it requires to seriously shop for clothes.I’m genuinely pleased to add a new blouse to the collection every three or four months. It just boosts my mood to have something new to wear.

Don’t tell anyone this, but I don’t always weed out old clothes. Especially if the clothes were a gift. I figure when clothes are gifts, it’s a free pass to keep the old. Even if I am the ‘gifter’ on special occasions; like my birthday or for someone’s wedding, or celebrating my 75th blog post… The possibilities of gifting to oneself is endless.

Seriously now, I have a perfectly logical explanation for why I keep my closet so stuffed. I can’t physically stand up to lift the hangers from the clothing rod in the closet. Instead I tug at the sleeve of the garment I want, and hope that it slips off easily. I don’t want my clothes falling to the floor. If they hit the floor, I can’t help but think that they are already dirty. Plus, I don’t want to do the little bend and stretch to pick the piece of clothing up. That’s the beauty of having a stuffed closet. All the clothes keeps the garment I’m after suspended long enough to get a good grip to pull it the rest of the way out.

So, that’s my excuse for having a stuffed closet, and I’m sticking to it!


It’s Voting Time, Yeah or Ney

Here’s a little tidbit for the current voting haze of  today.

The last election, my vote did not count.  I know this because a month or two after the election, I received a letter stating as much.  They rejected my vote, because my signature was not the same as the one I used when I first registered to vote.  This was not news to me, as my signature is never the same  due to having Cerebral Palsy[CP}  Developing my own unique signature was never in my scope of functions.

I discussed this fact with the election’s officer upon registering.  At that time, it was acceptable to make my mark, and then have someone sign witness by, followed with their name.  i was never 100 percent certain if it had to be the same person who helped me register.  I assumed it wasn’t the case, since I’m never with that person; and they have actually moved out of the state.

When I got the rejection letter, the first thing that crossed my mind was that I wasted a lot of time studying the measures.  It takes detective work  to decipher any hidden meanings.  I think the  writers of the measures quite often try to make them sound so convoluted to get us to vote one way, when in reality if the measure was written clearer, there’s no way people would ever vote for half of what’s on the ballot.  Half the time I’m scared of voting for something I’d be opposed  to, that I almost would rather skip voting.

Then I was mad they rejected my ballot. i started thinking what if the person tallying my ballot didn’t like the way I voted.  What’s to stop them from looking for any loophole to discredit my vote. and found it in the discrepancies in my signatures.  My imaginary conspiracy theory is working overtime here.  I don’t know the rules for counting the ballots once they reach the elections office.  However, I do think that over time people’s signatures do change from a list of different factors.  In that vein, there should be an easy way to indicate rather or not someone is authentic, instead of rejecting ballots because there is a discrepancy.  So what if it takes an extra month to get everything sorted  out.

So, this election I am determined to make my ballot count.  One of my PA’s suggested I take my ballot to the bank I use, and have a notarization done on my ballot.  When we called to set up an appointment, they said they didn’t notarize ballots.  They suggested calling the City Clerk; the City Clerk suggested calling the Elections Office.

We completely flustered the Elections worker by explaining that my last ballot wasn’t counted because of a problem reading my signature, and I wanted to make certain  my ballot was counted.  She said something rather snarky like I needed a signature stamp.  She then hastily ended the phone call. [Maybe she just didn’t fully understand our question.]  We called her right back, and asked if I could go to the Elections Office, and sign my envelope in front of some credible person  there.  She basically said I needed update my signature  each voting period.   So, I will do that with no complaints.

If you find any ballets in this post, rather then ballots, know that I would prefer being at the ballet than blogging about ballots!

To Chase, Or Not To Chase The Mouse

How useful is a computer without a mouse?  Pretty useless, wouldn’t you agree?  In a pinch, you can use the Tab and Enter keys, but it is not always easy to tell where the Tab has moved to, if it has moved at all.

Due to having C.P., I can’t use a standard mouse. I just don’t have the fine motor skills it takes to operate  a mouse. I have had an adapted mouse\joystick that has well placed function buttons under a grid to prevent me from hitting a command I don’t want to make. I had two such joysticks. One for home use, and the other for work.    As it turns out, both joysticks stopped working the same week. What are the odds of that happening?

I suspected the joystick at home was on it’s way out. In preparation, I went to Best Buy, and bought the only thing I thought might halfway work. A wireless Trackball, an upside down mouse, if you can picture that. I knew it wasn’t exactly what I needed, and that it would cause me loads of frustrations, because the buttons were too close together. However, for a quick fix, I told myself I could make it work!

I played a lot of solitaire, just to practice using the Trackball. Strangely enough, I discovered I could control the Trackball better if it was turned around, so that the mouse moves in the opposite direction that it usually goes in. By using it this way, I’m less  likely to press unwanted keys. Within a couple of weeks I was pretty pleased with how well I was using the trackball; I was actually winning some games!  However, when I tried to do some finite work, using the trackball became the most amazingly frustrating chore ever!  I would get the mouse exactly where I wanted it, only I couldn’t depress the right click, or I’d get so excited that I found the mark, that a wayward finger would brush against the ball and send the mouse clear across the screen.

I have a vivid fantasy of picking up the trackball, and flinging it out of my room, down the hallway, and running it over and over and over again until it is crushed into millions of tiny pieces!  Fortunately, for the trackball, it is shaped so irregularly that I can’t get a good grasp on it to throw it. Even if I did manage to throw the trackball, my new power chair would merely push it around until the wheel found a way to skirt past it!  Anyway, crushing the trackball would do no good service to myself. However, the act of describing my fantasy got out my frustrations!  Ah, the power of writing!

To be continued…………



Story Time

i am in a reminiscing mood, and long time ago I promised to write about a vacation that I made my dad take. Oh, it is a great story!

My youngest sister and I felt cheated out of family vacations, not that our older siblings enjoyed many vacations, either.  Back when it was just the three siblings and a hitchhiker [Not me.} in mom’s womb, they went to Disneyland. I can only remember one family beach trip, including mom’s entire side of family. I was in seventh heaven being surrounded by all those people who loved me, in a new place!

My dad was a farmer, and a certified home-body. At family functions held in other relatives homes, after we had the meal, mom was lucky  she had a hour to enjoy relaxing with family before he started asking to go home. As soon as she consented, dad would whisk me, the easily to catch one, and we would wait a good half hour in the car before all of my immediate family would trickle out . I would sit fuming in the car until at least three out of the other five of the family unit showed up.

I wrote my dad a letter stating how my sister and I felt we were being deprived of family vacations!  I most likely used quips,  such as;  everyone needs a break from their daily life once in a great while. Seeing new scenery is good for the soul. The fact that it would probably be the last time my sister would be marriage free, and able to take a family vacation with us. And, I probably threw in the fact that only by leaving home for a certain amount of time; can a person really appreciate the joy of coming. Home again!

He agreed to something like a three or four day trip. I was happy for anything he gave us as long as we were away from home, and seeing new sites for at a couple of days!  Our destinations were Crater Lake, Lava Beds National Monument, The Oregon Wildlife Safari, and The Oregon Caves. All of this lead in stuff is really about The Oregon Caves!

At  the Oregon caves, which is a natural wonder;and not wheelchair accessible. Mom made special arrangements with the tour guide, to have my sister help me walk through the first three caves, then walk me out, settle me back in my power chair, then dash back to join the rest of the tour. I was left to entertain myself for an hour.

I was happy with the arrangement. My plan was to find a spot to read the book I was engrossed in. Just as I got my book open to where I left off, which wasn’t easy for me to do, one handed, and with my left arm being the paper weight.  Suddenly I was surrounded by yellow jackets. I was terrified, of getting stung!  I had to move!  I can’t believe I didn’t drop the book during the whole process, of which i had a 50 percent chance of doing.

Against my better judgement, I decided to go meet my family where they exited the cave. Which took me up a hilly path that had no railings. I specifically remember this because as I was driving up the path, I thought very calmly, that if a belt that helped turned the wheels of my power chair slipped off, I would be a goner! {Once when I was wheeling down the street in a kiddie parade; I suddenly lost all control of my power chair, and went careening into a ditch. At first, I was accused of horsing around until it was discovered that a belt had slipped off it’s track.}  Then just as calmly, I thought, I have had a good life up til now, if I die today, I have led a happy, rich life!  But life wasn’t done with me yet!

I drove on the inside, closest to the cave side and not the outer edge of the path. I was doing fine, but when other people came along I startled and that meant my hand came off of the power wheelchair driving control. When that happened my wheelchair would roll backwards a bit. There was this couple who decided that after seeing me startle and roll backwards, that I was not safe to be on the trail.  I did not have my communication device with me and only had my voice to communicate with. When I am with total strangers, I feel my tongue swells triple its size, making communication impossible.

I seem to remember, this couple spoke French, I knew they were upset with me.  They scolded me, and would not leave me alone, they hovered and talked about how unsafe I was.  It felt like I was being held hostage. My sister knew that I would be waiting, so hurried ahead of my parents to meet up with me. She came across the couple and attempted to defend me.  She said she trusted my judgement and driving skills and that if I felt I could do the trail, then she felt I could do the trail. She told them the chair would only roll a little bit if my hand came off the control. The couple had to tell her that I should not be left alone. My sister and I split when our parents came on to the scene, and the couple started in on them. I was steaming mad!  .

My sister and I had to pick up my manual wheelchair from the main lodge of the Oregon Caves.  To get me into a better frame of mind, my sister got into my manual wheelchair and wanted to race me to our van.  We took off in a frenzy, just as our parents and the french couple reached the bottom of the trail.  I’m sure the couple shook their heads, and thought, those out of control American kids!

Author’s note:  I used the Oregon cave story in a recent presentation.  I used my sister’s version, which was less wordy, and less effort to finish my presentation without getting stressed out.

Two Minutes For Her, or six Feet Under For Me

I knew what I needed; what would be best for my needs, and my request was ignored. Why do people think they know what is right for you, and ignore your pleas to the contrary?

In November, I received my new power chair, after a lot of hold ups; mainly from the doctor. When the wheelchair technician delivered the chair, she just made a few adjustments to the seat, saw me drive the chair, watched my back end fishtailing which knocked over the TV tray/table, and asked me to sign the paperwork.

I asked her to slow down the turning speed; the chair is a mid-drive power chair, which means it can essentially turn on a dime. With no adjustments, and “Hello, my CP!” Does a spastic body and a uncontrollable power chair sound like a perfect fit?  Heck no!  The chair easily went into tailspins. The technician wanted me to try it for two weeks, and she would call and check to see how I was doing.

I should have put my foot down and insist she adjust the speed it turns, because it was just way too squirrely for me! Whenever, I went into a store, I was afraid I would swerve unexpectedly and wipe someone out! Last week when I was driving up the ramp at church; I was going along perfectly, when suddenly I veered off to the right and crashed into the rail. (My body just twitched or something, and my path took an odd twist!)

When crossing the street after the crosswalk light said to go; it always took about 3 to 4 seconds to get my hand on the joystick and gain control of the chair, and by that time motorists assumed I wasn’t crossing after all, and would start turning just I began to move. I strongly feel the technician put my life in danger by not doing as I asked. AND, She never did call to see how I was doing!

Finally one of my personal assistants called the wheelchair provider and asked them to come by to adjust the turning speed of the chair. A different technician came. He listened as we described the difficulties I’ve experienced while driving the wheelchair. The programming took all of two minutes, and then another five minutes while I got in and test drove it. Oh my goodness, it feels like a completely new chair! No more fishtailing. I can actually start to drive forward from a stop, and not start to immediately turn into circles!

How hard would it have been for her to just program the wheelchair when I asked? It would have saved me a lot of grief and anxiety. It would have saved on time and gas for the wheelchair company. I thought the costumer is supposed to be always right. Maybe the technician thought I could master the squirrelies, but why waste my efforts when the problem was fixed by some minor fine tuning. I wonder how many costumers have had similar experiences. I know of at least one friend who has had an issue with their new chair. She should be written up.

Like some people, I think the she-technician wanted to lord some power over me! Maybe she had six other appointments that day, and was anxious to get on her way. Maybe she just didn’t want to own up to the fact that she didn’t have the programmer with her. I have a few more scenarios, but I don’t feel the need to elaborate!

Was saving two minutes really worth putting my life in danger?

Essentially, this looks like my powerchair.  Only mine is newer, and cleaner.  Um, and I’ve never trick drove my powerchair like that!  Also, please note, I did not go through the company that made this video to get my chair.

Cerebral Palsy Is Not A Disease. . .

The other day one of my PAs referred to Cerebral Palsy(CP) as a disease while my sister was present. they received a mini lecture from her. I think it is worth repeating that speech since I hear people call my disability a disease more often than I like.

Cerebral Palsy is not a disease, it is a brain injury. Therefore, people cannot catch CP from me. I received my brain injury while I was being born. Children up to age Three can injure their brains through many accidents, and doctors will call the brain injury CP.   However, if someone older then three  injures their brain,  it is simply referred to as a brain injury.  l believe by age three, the brain is totally knitted together  so that it is apparent that a brain injury has occurred.  to cause the shift in the diagnoses.

Just to be super clear, in my life, nobody has come up to me and accused me of  giving them CP.   Did I just hear a collective sigh?

CP is not said to be hereditary.  However, I did have a cousin who had CP.  My moms brothers son.  In my cousins case, he was too big to be born the normal way, and C-sections were not invented yet.  so  like me his brain  injury happened while being born.  Nine years later, I was born on his birthday. isn’t that weird or what?

It is said that no two people with CP has the same exact disabilities and abilities.  Take my cousin and I for instance.  David was stiff like a board and totally locked in his body.  His only means of communication were his  eyes and some facial cues.  We all knew he was smart because he  laughed at the right times and grew serious when it was appropriate.  My aunt was a great role  model, she talked to David like he was totally normal, and everyone followed her lead. When I came along my family treated me just the same. I owe my aunt and cousin a multitude of thanks for paving the way for me!

Welcome to My World

I just want to vent a little about a frustrating aspect of my life, which is getting new equipmen i.e.  things that improve the quality of my life, such as wheelchairs, communication devices, grab bars and different things that help make my life genuinely easier

To get needed equipment I must first state to my doctor that I have certain medical need that requires new technology.   The doctor will then send me to an Occupational,  Physical, or speech therapist.  They then need to access my  needs and determine which piece of equipment would best fit my needs. Then its back to the doctor for a face to face appointment where they ask questions to fill out paper work that gives the doctor’s ok for that equipment.

Sometimes  I get to have a trial period with the equipment. I can’t express nearly enough how important the trial period is. Simply put, if an insurance company will fork out thousands of dollars for a recommended piece of technology, it only makes sense to “test drive” the device before purchasing it.  That way the equipment will be used, instead of collecting dust bunnies in some closet.

The next step is all in the therapists hands.  It is the therapist job to write a convincing report that states for the medical well-being of my client needs a new power chair The report would list why I need a power chair. If I was lucky enough to have a trail period with the equipment, the therapist may state “my client has demonstrated that she can  successfully use the power chair”. The occupational therapist sends the report to the doctor I asked for the referral, and the doctor sends it back signed to the occupational therapist, who then has to send it to the insurance company! if all goes well, the insurance company approves the request. if the request is approved, the new equipment will come, between one to six months later.

A person can get new wheelchairs and communication devices every five years. I have been due for a new power chair for about eight years. I had not pushed the issue because the chair was in fairly decent shape, and really hate asking the state for anything.  However,  the last few times I had my wheelchair serviced, I was told the chair was outdated; I could not get certain parts for the chair anymore!

So, I started the whole grueling process. I got the first three appointments finished, and  then I waited. Four months go by, I received a call from the place that evaluated me for the power chair, saying they never received the face to face report from the doctor. We played phone tag with the wheelchair company, both of us trying to get the Dr. to send necessary paperwork. After six months of not getting the needed paperwork, I again had to do a face to face appointment with the Dr. to have him sign the paperwork and give his ok yet again, to  please the insurance company.

True fact: I received my first power chair when I was twelve. I was away at summer camp when it arrived. My mom sent me a letter saying that I had a surprise waiting for me when I returned home!  When I got home, a party was in the works. One of my friend’s mom drove my new power chair up from our basement, and I finally understood the reason for the party. My power chair had at long last finally arrived! It was indeed something to celebrate! However, the joy of that moment became suddenly subdued, when I got into the chair, I had already out grown it. However, it didn’t stop me from exploring the barnyard, and getting stuck in the cotton seed pile, which is a kid magnet in my family! A quick adjustment at the wheelchair repair shop fixed the problem, and I was all set to find more places to get stuck in!