The Ganglion Cyst Was Not the Problem

I noticed a ganglion cyst on my functional hand around January of 2017.  It didn’t hurt much; only when I bumped it just right.  It just looked like I had a semi-squishy bubble on the palm of my hand that numerous people offered to pop, to which I kept discreetly refusing their kind willingness to solve my problem.

In November, everything changed.  I started waking up to a numb and tingling right hand and arm, with what felt like pin pricks, like when some part of your body is asleep until you wiggle, and the tingling fades away.  In my case, the numbness lasted a good part of the day!  I stopped doing my transfers, because I couldn’t feel the grab bars.  At least I had some good sense not to risk hurting myself. As the day wore on and the numbness eased up, I would help do more of my transfers. By night, when I went to bed, I was able to fully transfer myself onto my bed.

I was in pure agony!  More than once I declared I wanted to chop the whole arm off. Since I was in such misery, I went to lots of doctors’ appointments in search of answers.  I finally found a doctor that would remove the cyst.  However, he first sent me to be tested for carpel tunnel syndrome, because he was concerned I had pain when I shouldn’t have had any. The doctor reasoned, “Why not take care of both issues in one surgery?”

The test was a shocking experience, literally.  Involving electrodes and wires, and an eye-roller comedian of a doctor.   It was determined with one jolt; I indeed had carpel tunnel syndrome, but he had to finish the testing process. The doctor did confirm my suspicion that cold temperatures aggravated the carpel tunnel syndrome.  He also said something that I didn’t want to hear.  I likely have carpel tunnel in my left wrist, too.   He didn’t test the left wrist, because it wasn’t prescribed.  I will cross that bridge if it comes.

After receiving an official diagnoses’ of having carpel tunnel syndrome; it felt like everything went into hyper drive! The last few preoperative appointments flew by, and bang; I had a date scheduled for the surgery.  Exactly one week before the operation, it dawned on me that I wouldn’t have any way to communicate with new personal assistants (PA’s) should there arise an occasion where we needed fill in staff.  So, I quickly contacted my speech pathologist and told her my concern, and she set me up with an alphabet eye gaze board, and a stack of blank grids to fill in my own communication needs. She would have helped me more if I had given her more time.

Note to all AAC Users: If you are scheduled for an operation that will put you in a position where you cannot access your AAC device; make an appointment with your speech pathologist.  Come up with a sure way to get your thoughts out while you are healing!  My PA’s were not motivated to help me create a new communication system, since they mostly could understand my speech!

handbefore

My hand before the surgery,

Another angle

See the lump?

June 14th dawned despite my misgivings.  The doctor’s confidence that he could help me, gave me hope.  Even so, I was second guessing needing this surgery all the while they were prepping me for the surgery. For every protest I had, my sister kept reminding me how miserable I was November through January, and that I did not want to go through another season in pain!  I couldn’t argue that point.

The operation went smoothly.  It lasted all of four minutes.  My sister didn’t even have time to settle down in the waiting room before they were calling her back.  I was relieved the surgical team saw no need for a breathing tube during the surgery.  My recovery time was so much easier without it.  I was on my way home within two hours.

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Waking up after surgery.

 

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One bandaged hand.

Home from hospital.

Home and obviously in pain!

Having surgery meant for a period of three to four weeks I could not use my right hand, the hand I do everything with.  I could not type, wipe my nose or mouth, or use the TV remote. I could not readjust my left hand/arm when it contorted and cramped up, which totally was a pain, because sometimes I asked my PA’s to help uncurl my arm three or more times an hour depending on how agitated or uncomfortable I was. A few times, the PA would be busy helping my housemate; I just couldn’t take the pain in my left arm anymore, and I had to wrangle it back into submission!  Each time I did my “readjusting” I would imagine my stitches busting open, and blood oozing from the bandage, but in reality, such a thing never happened. The mind picture stopped me from doing this stunt often.  Instead, I would try to breathe through the pain.  It totally sucked not being able to pick at my nose.  Come-on, everyone does it!

It's about time to get clean

Lets get the stink off already!

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Bandage covered!

I needed a way to get my PA’s attention when I was in bed, or when I needed to get up.  A few years back I acquired a doorbell when I was sick, but it was useless in bed because there was never a good place to put it.  The night of my operation, I was in no mood to be messing around with the crucial placement of the doorbell.  In a flash of inspiration, I had my PA tape the doorbell on one of my throw pillows, and then I had her place the bell on my body pillow which I  keep as a barrier between me and the wall.  Necessity is the mother of invention, and my bell system worked for me.

With lots of time on my hands, pardon the pun, Hulu and Netflix were my best friends during my recovery period.  With their help I binged watched shows like; New Girl, Schitt’s Creek, The Good Place, and an assortment of my favorite movies.  Three or four episodes would run before stopping, and it was often timed where I had a meal or had to use the loo.  Miraculously, I was able to zone out, and gave my hand the rest it needed to heal.

Revealing

First time seeing the scars!

Free from restrictive bandage

Hand wigging out after being freed.

I got a little peeved when my physical therapist was shocked to find out I had not been using my hand after the stitches had healed.  I wanted to reply, “At my last session you said I shouldn’t use it.  Make up your mind already!”  At the same moment, I was mentally bringing my palm up to my forehead, thinking of course the stitches have healed!  You don’t have to be fiercely protective of your hand anymore!

If I hadn’t had an actual concern that the ganglion cyst was causing me pain, and therefore causing damage, I probably wouldn’t have sought out medical help. I thought the cyst was the cause of my pain.  When it was really the carpel tunnel that was causing all the pain.  Over six months later, and into winter nonetheless, my right hand and arm are relatively pain free.  Somehow I thought my having cerebral palsy would somehow work against the effectiveness of the operation.  I am happy to report that so far, it has not!

 

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!

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.

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!