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!


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.


Waking up after surgery.



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!


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.


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!


My Experiences with School Aides

I was asked awhile back to write about my experiences with school Aides, so  here is my viewpoint.

My school was 17 miles away from home.  A thirty-five minute drive in my family’s car. However, by school bus it was close to a two hour ride one way!

I went to a school called Holiday Center. The school was created for children who had physical disabilities.  The grades ranged from kindergarten on up to the sixth grade.  Normal classwork would be conducted; while individual students would be pulled out of class, and taken to therapy sessions. The therapies included Occupational Therapy(OT), Physical Education(PE), Physical Therapy(PT), and Speech. I loved PE because it was fun and games with my peers, plus I loved the teacher. However, the other three therapies I gradually grew to resent, because I didn’t much like keeping an eye on the clock so that I could leave a interesting class, to go to a labor intensive therapy session. I was always torn between classwork and therapies; both in which would eventually lend me skills I would need in the future!

Holiday was attached to a grade school. of which we had the use of it’s library, gym, and stage for Holiday’s school productions, (my favorite times of year).  Eventually, my class moved into  the school, so we could fully experience be emerged with other “normal” peers.

I haven’t gotten to the main focus of this post yet, which are school aides.  School aides were the backbone of Holiday. They were the teachers extra set of hands.  They kept the schedule running smoothly. They were also there to assist the students with their personal needs.  Such as helping with bathroom breaks, with lunch, helping us pick out library books, and goodness knows what else.

They became invested in their students lives. Often becoming a sounding board to their students . Once when I was convinced my parents were crazy for insisting I needed to get braces to straighten out my teeth. My school aide picked up something was troubling me, and got me talking. By the end of our conversation she helped me to see the benefits of the torture coming my way, and even how lucky I was to have parents who saw that I needed braces!  To this day, I’m grateful for the aides I had at Holiday Center, for they encouraged me every step of the way.

Maybe at times the school aids were a little too intrusive.  They were in consent communication with our parents.  They knew the contents in our backpacks, so no surprises ever could occur.  Above all that, I was convinced I was an old soul at heart, therefore I preferred talking to my aides and teachers, rather then most of my peers.  This lead to a social awkwardness I still struggle with today!

My biggest goal while at Holiday was to be “mainstreamed” into my neighborhood school system.  This dream only happened after I agreed to stay at Holiday an extra year; so I could be prolific at using the communication device that was determined I absolutely needed to be successful at my new school.  Which, in all honesty, I was nowhere close to being great at.  The device looked like a  calculator.  Every word, phrase, and letter had a three digit code I had to memorize.  It had a male robotic voice, that didn’t jive with me at all.  What was it’s greatest downfall?  It’s lack to store my own phrases, and school work.  If it had those two capabilities, I could have made it work.

My graduation speech should have tipped me off that the device wasn’t well matched to my needs.  I spent about two hours programming the speech into  my communication device.  I was keenly aware of  the fact that if the device were to be.turned off, the speech would be lost.  There wasn’t a lot happening in school that day, so I decided I needed a breath of fresh air, and went outside.  When I wanted back in; I waved  at someone to let me in, and that’s when my hand fell ceremoniously on the device’s on/off switch.  I swore my first blue streak, and ran to my speech therapist who quickly helped restore my speech just in time.

Interesting enough, my two school districts feuded over who had the rights to my device.   Mom calmly but  firmly said, “You promised my daughter she could go to her neighborhood school, if she had this device. She is taking it with her.  We will gladly return the device when she’s no longer using it!”  The battle was dropped.

After my first day at my new school, the second I got off of my quickest bus ride ever; I burst  into  tears.  It was the hardest day of my life!  I had what I wanted, going to the same school my siblings went to, having some of of teachers say, “Say, are  you so and so’s kid sister?”  I literately knew no one.  I endured stares, and awkward moments,  while finding all my classes before the horrid bell rang.  I wanted to give up, and go back to Holiday where everybody knew me, and felt like  family.  However, I could not give up with just one day under my belt!

I only had  an aide a couple of times during the day.  Both were in modified study halls, plus scheduled bathroom breaks.  The rest of the time, I relied on my peers.  They helped me with  getting my books  out of my backpack and to the right pages, taking notes for me, and handing in homework.  They even helped  feed me my lunches.  Knowing myself the way I do, I would have stopped eating the moment my classmates stopped.

I didn’t have a female version of Kenneth “Speechless” hanging around constantly to interfere with peer bonding, and that was priceless, and I wouldn’t change it for the world!  However, sometimes I felt like a burden to my peers.  They didn’t walk into school starting 7th grade thinking they would be volunteering to help me at different times during the next six years.  However, I’m so grateful some my peers were willing to help me!  Go, Canby Cougars of 1988!  You rocked!

P,S.  In my Junior year, I ended up giving the communication device back to Holiday Center.  Instead I opted for a laptop computer, and a little device that typed  out ticker-tape messages.  Both devices served me about eight, years until I begrudgingly admitted that technology had improved enough that I felt I could be successful at using.

Locked Out, or is it Locked in?

 Approximately 12:15 in the morning I became trapped in my bathroom for two and a half hours.  After helping me onto the thrown, my personal assistant, Beth decided she needed to go and get something from her car.  As soon as my front door closed behind her, my heart started racing.  Did she make sure the door was unlocked?  I didn’t think so, because she had slipped outside way too fast.  Why didn’t I have her wait until I got out of the bathroom, I berated myself.   If I had Beth wait, I would have been in my wheelchair and therefore able to open the door for Beth.  Then I could get myself nicely into bed, where I desperately wanted to be!  Sure enough, after a short time she pounded on my front door saying  she had locked herself out!  This is not the first time Beth has locked herself out of my place; I would think she had learned a lesson! 

I spent two plus hours trying to talk myself into getting off the toilet, opening the bathroom door, and then knee walking to my front door to open it.  Up until my mid teens I knee walked everywhere at home.  I would hop down off chairs, recliners, and sofas, land on my knees, and go do whatever was on my mind.  It wasn’t enough to just knee walk, I felt the need to run on them 75% of the time.  Family members grimaced every time they saw me running, and they would warn me that I was going blow out a knee one day.  I just thought like many kids do, that I was invincible.   

Most of my pants were worn thread bare at the knees.  It is safe to say, that when I got into high school,  I did not think it was cool to have pants with thread bare knees.  I started spending more and more time in my wheelchairs, which I told myself I would never do.  On top of that, my knees began to deteriorate, so I really had no choice, but to use my wheelchair full time.    It has been at least twenty-three years since I have spent large amounts of time knee walking.   My knees ached just thinking about walking on them again! 

If I was really going to be the heroine of the night, I needed to do a couple things first.  I wanted to pull up my pants, because if I did work myself into jumping off the toilet, and fell flat on my stomach, I wasn’t about to be rescued with half  massed pants!  I pushed myself with my legs up into an arch above the toilet, and with only my right hand, I inched the pants up.  Having my pants up served a duel purpose.  One.  My bum was no longer cold!   And two, I had an extra padding around my knees.  However, I wanted a softer landing strip, so I pulled the rug in front of the toilet over to the side where I would land.  There still was maybe a foot of bare floor between the rug and door.  I didn’t like that, so I tried pulling the hand towel down.  I thought I could kneel on it, and sort of slide within reach of the door knob.  I could barely touch the bottom of the towel, but I couldn’t grasp it firmly enough to yank it down.   So, there I was afraid I would harm myself by doing something I did thousands of times as a kid!  It definitely sucks growing older sometimes!  

Meanwhile, Beth went to find my apartment manager, but could not arouse either of the two on-site managers.  My neighbor was still up, so Beth told her about our plight and asked if she might use her phone.     She tried to call anyone she  could think of to come help us, only two people responded, and they didn’t  know how to help!  She even tried calling 911, but they didn’t think in an emergency.  How did they know it wasn’t truly an emergency?  By that point I could have fallen off my thrown, and had broken a hip!  Instead, they advised her to call a locksmith, and that’s what she did.  The man wanted $175 dollars to open my door!  

 There is a new rule I am enforcing in my home.  My personal assistants can not go outside when I am in the bathroom.  If they absolutely have to go outside, they have to make sure to take the apartment key, and or make certain the door is unlocked!  I will train everyone on

It’s apple season!


My sister brought me a bag of apples from the apple tree in her yard.  I got down to just a few apples, like maybe eight.  I wanted someone to make me an apple crisp.  One person said that I didn’t have enough apples, that I should just make apple sauce.  Then another personal assistant came.  I asked her to make apple sauce.  She said “I don’t know how to make apple sauce, but I will make you an apple crisp.”  I told her that she was speaking my language!  I am forever amazed that what someone deems impossible, another thinks possible! 

Posted at 3:16 PM by

How I live with extra arms and legs

I have been living in the same  apartment for the last fifteen years.  Since I physically need assistance to get through my daily life, I hire live-ins or roommates.  So far, I have had nine roommates during  those fifteen years.  I think that is a fairly good average. 


Some of my roommates have stayed just a short time, like eight months to a year.  While other live-ins have stayed two or three years.   Of course, I did not want to see most of these women go!  While other times, I couldn’t wait to shut my front door behind them! 


This may sound bizarre, but even if they were the worst live-in, whenever any of my live-ins   decide to move on with their lives, I feel like my arms and legs are amputated when they leave.  This is because my personal assistants have literally  become my arms, legs, and sometimes my voice.  I have been with these people for a time, and I have trained them to help me in certain ways.  So, when they leave a big hole is left for someone else to fill. It takes lots of time for gap to close. again.   When new personal assistants come; I am not just working with them to understand me, I work extra hard at communicating my wants, needs and preferences, until they become second nature to them.   Slowly,  as the new personal assistants gain my trust, my limbs grow back. 


 I have been without a live-in for about fifteen months now.   I think the longest I have gone without one is just short of two years.  Live-ins are not easy to find, because they have to give up a lot of their time just to help me live my life!  A regular live-in shift starts at 5:00pm and ends at 8:00am.  I am suppose to have a day time worker from 8:00am to 4:00pm.  Then the live-in person works three weekends a month.   I know that these hours are a huge sacrifice for anyone, and so I am grateful whenever someone even considers  taking the job.  


What happens when you do not have a live-in?  That’s a very good question!  Usually I get people who are on-call.  These are women who usually  have worked with me before.  I much prefer it this way, because naturally my day goes a lot smoother!  It is no fun opening my door to a perfect stranger, and knowing I have to train them to  work with me on my own, However, once in a blue moon, it does happen.  On days like those, I know nothing I have planned on doing that day will get accomplished except for basic things like eating and using the bathroom.  Keep in mind these people are perfect strangers to me, I like to have them within eyesight of me, because I do not want them looking through my things and taking stuff!  So, what happens is I talk to them the whole day using my communication device, and get to know them really well!  At the end of the long day like what I have just described, I fall into bed totally exhausted! 


The hardest thing about having on-call people working for me is that the schedule of who is working when is constantly changing.  I will go to open my door thinking I am going to see a certain person, but a totally different person stands in front of me.  I try to act pleased to see the unsuspecting personal assistant,  and then I readjust my  day according.  You know, there are some things I want only certain people to do for various reasons, mostly trust.  However, some people have better skills than others.  For instance, would you let anyone help you with your finances?  Of course not!   Now maybe you can understand why and I am disappointed when that certain person I am counting on is not the one  I let into my home!  However, I try to make the best of the day! 


On rare occasions no one will show up for the next shift.  Sometimes I let the person getting off work go early.  If the next personal assistant does not show up in a half hour, I go through the process of calling for help.  I call my sister, because she understands me the best.  Next  Carol will call the manager over Support Living, and tells them what is happening.  About fifteen to twenty minutes later, the manager will call me, and tell me what happened to my personal assistant, and what to expect  next.  Usually someone is here within the hour.


The last time nobody showed up was two months ago, and the reason for it, was that no one was scheduled.  I think that was the first that has happened!  My night personal assistant was asked if could stay until ten, however she could only stay until 9:30.  I made sure she helped me to the bathroom, get dressed, and to eat a little breakfast before she left.  The next time someone showed up at my door was at 1:30.  I can be alone for three hour, but anything over that is pushing the limits. 


There were two people at my door when I opened it.  This could only mean one thing, I was going to be introduced to someone new, and soon be left with her.  My first mission was to use the the restroom!    After that the new person was given a quick tour of my home, and a few training instructions.  We  were left to fend for ourselves. 


My second order of business was to eat; I was starving!  I thought there couldn’t be anything easier to fix then Cambell’s Tomato soup, and grilled cheese.  The woman didn’t know how to open a can of soup, much less then prepare it!  Don’t let me start  describing the grilled cheese disaster. 


I snapped!  I was tired of not having up-to-date schedules of who would be here and when.  I was tired of not being able to do the things I needed to do, like go to work.  And finally the straw that broke my patient self, I was sick of training new and very inexperienced personal assistants!  I wrote a direct, but polite e-mail and sent it to everyone I knew who had a say in my direct care services!  I did not expect much if anything to happen.   


However, I was amazed by the enormity of the changes that came!  A new assistant manager was hired, and I got three personal assistants that will work throughout the weeks, until I hire a live-in.  So, I have two personal assistants sharing the weekday shifts, and a weekend person.  Within two weeks of  sending the e-mail, I was busy training all four of these people separately.  Of course, one of these assistants did not stay, so I trained a fifth person on short notice!  I have no doubt I will be training at least two more people before things start settling down! Would anyone like to take over being me for a week, while I go on a much needed vacation?    


I promise I am almost finished with this post!  In addition to three daytime personal assistants, I also have three nighttime people.   One works Monday through Thursday nights,  My sister works Friday and Saturday nights, and another woman spends Sundays with me.  Having my sister working with me is nice, because it gives me some stability.  Plus, I have her do some things that I only trust her with.  So, I am trying to keep track of six personal assistants, and myself!   


I have lots of stories about my personal assistants, so stay tuned!

Posted at 10:08 AM by