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!

Here’s What A Little Insect Bite Can Do…

Gross, huh?

Gross, huh?

On March 21st, I found some sort of bug bite on my right thigh while I was getting my PJ’s on.  I didn’t think too much about it and went to bed.

The bite  progressively grew bigger through the weekend. I kept hoping the bite would miraculously go away by itself!  There was no chance of that happening, much to my dismay.  

The following Tuesday,  I finally caved in and had one of PA’s  make me a doctors appointment.  They offered me an appointment April 15th.  My PA said, “No,  she needs to get in sooner; she is in pain.” I got an appointment  for that next Thursday. 

By the time I saw a doctor, I not only had a spider bite the  size if a baseball, and because I didn’t see the doctor right away I had also contracted cellulitis. I received a prescription  for antibiotics and a stint of time with my leg elevated, and a ten  minutes with my heating pad every few hours.  the Doctor did warn me the infection would get worse before getting better .

The bite was effecting the way I moved about. Normally, it’s no problem moving around the house in my manual wheelchair, by using my feet to propel myself around.  However, with a huge abscess  on my leg, I didn’t want to move around any more than I had to, because it sure did hurt when my left leg rubbed up against the abscess. I used my power chair more. I had to have extra support when I needed to transfer from one seat to another. It bruised my ego to have help getting in and out of bed, but it was better than falling and hurting myself even worse!

The cellulitis plagued me more than the spider bite. When I sat up, the cellulitis became quite uncomfortable. So, I was driven to utilize my recliner. I caught up on all the shows I watch; like Bones, Castle, and Gray’s Anatomy. Then I became engrossed in, Call The Midwife, that I saw while prowling through the shows on Netflix. I’m forever grateful to my friend who suggested I invest in a Roku streaming device, during the many times I would complain of having to watch one too many commercials, and paying too much for cable. These days, I have to force myself to watch some regular TV, if for nothing else then to keep current in the world!

Getting back to The spider bite. Two days later, the bug bite looked worse. My sister was called to get her opinion. She took one glance at it and said, “I’m taking you to the ER!” I protested, but it fell on deaf ears. I had nothing to eat that morning, and in hind sight I should have insisted that I eat something first.

The ER doctor looked too eager to pop something! I thought the proper procedure was to lance an abscess, and then gently squeeze the puss out. Nope! He put both of his thumbs on either side of the abscess and squeezed! It was extremely disgusting! The abscess erupted like a volcano! A flow of puke green cottage cheese curds cascaded down my leg. Seriously, I wanted to kick the doctor in his sensitive place; it hurt so badly! My foot was in an excellent position do so. I didn’t, and I’m so glad I didn’t, because as soon as he was done with me a real emergency came in. I never saw him again.

I wasn’t quite done grossing out my sister for the day. Before the doctor left, he wanted me to take my second antibiotic of the day, but then he added another antibiotic and a Percocet to the mix. I was rather leery about taking medication on an empty stomach. The nurse suggested I could have a sandwich, but all she brought me was an applesauce, and a package of crackers from the waiting room.

Twenty minutes later, all bandaged and medicated up and on the way out to the car; I started feeling hot and dizzy. As soon as my sister started backing out of the parking place, I threw up on myself (It was my brother-in-law’s car so I needed to preserve my good grace to ride in it.) My sister had planned on taking me on a few errands, but she quickly changed her mind. I was okay on the straight road, but once we reached my little, curvy street I lost it big time, but since I didn’t have anything of substance in my stomach, it didn’t smell. I got home around three, and I finally stopped up heaving about nine. I felt absolutely miserable!

I have two pieces of advice for you. If you are unfortunate enough to be a target of a bug’s fangs and the infection is not getting better within, please have it checked out by a doctor Secondly, if the doctor insists you take a cocktail of medication before leaving (this will most likely only happen in the ER), if you haven’t eaten in quite some time, if you have a slight build, and you’re sure you won’t be whisked off to surgery. Do yourself a big favor; insist right back that you have to put something substantial in your stomach before taking the medicine. Anybody in their right mind would want to avoid six hours of nausea, right?

Going to the Movies

Walter Mitty

I went to a movie on my own a week ago. For Christmas I got some Regal movie passes. I thought it would be good for me to do something by myself, and since I had movie passes I thought that would be the thing to do.

When I arrived at the theater, I typed out what I wanted to see on the Eco communication device, which was ‘The Secret Life of Walter Mitty”, I played it out to the ticket box operator,  (I was amazed she understood the eco.) I gave her the pass, she gave me a ticket, some guy opened the door for me, I had to duck under his arm.

What happens when both you and the ticket taker have Cerebral Palsy? I spazzed out while handing her the ticket. The ticket fell to the ground causing her to knock something else to the ground, and she’s saying, “I’ve got it. I’ve got it.” Fortunately, I successfully grasped the ticket stub and shoved it into my coat pocket. She told me the number of the theater the movie was in, and I was sure she said six.

However, I was feeling bad for dropping the ticket, which caused the mini cyclone, that after I had went on my way I started wondering if I heard her right. Unfortunately, the theaters don’t have the names of the movies over the doors any more, so I was second guessing myself. I asked someone (I think it was her job coach), to double Check the theater, I was right! It was just a little discerning because I was so early, and the theater so empty!

I struck up a little conversation with the job coach, we exchanged names, but I can’t remember it now. I saw a family from church. Chatted with them a little while. I worked some on a journal entry.  Was I busy with my time, or what?

When I noticed  the first couple enter the theater, I followed shortly after them. I love watching places filling up with people. It’s interesting to see them staking up their places. During the previews, four people in wheelchairs came into the theater. I thought, what is this?  A gimp convention!

I guess I have to eat some words here. I had laid claim to the small two spaced wheelchair sitting area.  I didn’t want to give up “my space”.  I was early. if you snooze, you lose, I thought.   Oh, I am a pushover, of course I moved! I should have parked correctly in the first place. It’s rare that two people in wheelchairs are in a theater, let alone five, who would have thought?

I went to the movie without much expectation. I am not A Ben Stiller fan, but he won my heart in his role as Walter Mitty! Walter fantasizes about winning the girl of his dreams excessively, almost to his detriment.  However, to find a missing photo, he must get out of his comfort zone, and start living real adventures.  I found a kindred spirit in Walter Mitty. Ben’s eyes looked amazing in the movie!  Ben both directed and stared in this movie. Way to go,   Ben  Stiller!

I was a little dismayed when I exited the theater, I found that it was five minutes into the window of time where a bus would  whisk me home.  However, I calmed myself down with the fact that the buses are rarely early, and rarer still, on time!  Even still, I was out within the five minutes they give  people to get  on the bus.  Turns out the bus showed up near the end of the half hour window.

You,  my readers,  may be wondering what would have happened if I had  needed help while I was at the movie?  Good question! I can send texts via the Eco.  It comes in quite handy sometimes!  Of course, I would be in a pickle if both my power chair and Eco stopped working at the same time!  Thank goodness none of that happened that day!

Turtle Speed? Say What?

ImageImageThe image above me,  is that of a turtle. Do i look anything like a turtle?  No, i didn’t think so either .I was exiting a Lift bus when the driver said that I should have my power chair on “turtle”. Now I was paying attention to how I was driving onto the gangplank and not to her. When I stopped, I gave her a quizzical look. She said it was a new policy that Lift was trying to enforce on their riders to keep us safe.  When I still looked questioning she threw in that I had done nothing wrong.

When the lift reached the ground, she really wanted me on turtle speed. I tried it for 5.5 seconds, and I could not stand going so slow.  I turned my power chair up to a hungry turtle speed, and ignored her plea to go so slow. I had an appointment to get to, for goodness sake.

Either that driver was a control freak, or she had a bad experience with a passenger who had trouble driving their power chair.   No other driver has mentioned “the turtle policy” again, so I am sure it was a rouse to keep her “passengers” safe.