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!

 

Health Care: It Should Mean Something To You!

What does health care mean to me?  It means quality of life!  It means being able to go to the doctor and dentist when I need to. It means living in the home I do, and being able to have 22\7 personal assistant care. It means being able receive the tools such as my power chair,  communication device, eye glasses, strategically placed grab bars around the house,  shower chair, and manual wheelchair; all of these things make me as  independent as I am.

It was clear I had a disability from the traumatic birth I went through. The real question of just how disabled I was had to wait and be seen until I grew. However, the doctor told my parents that there was an institution called Fairview that I could go to. My parents didn’t give it a thought, and kept me at home.  All through my childhood my mom was able to get me the help I needed when I needed it. A contact of mom’s got me seen at Shriner’s hospital, Shriner’s sent me to Child Development and Rehabilitation Center, where I received my first physical, occupational, and speech therapies. I was born the year after the Higher Education Act of 1965, and that ensured that I received “financial assistance” for the special equipment I needed to get my education.

I believe that without my family’s support and the timely medical care I received early in my life: I wouldn’t be the person I am today!  I also know that if people are not personally disabled or are attached to a person whom who is living with a disability,  they may  not understand the importance of specialized health care for individuals who have disabilities. Be aware, be involved, be an advocate!

 

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!

Knowledge is power #2

Just because someone sits in a wheelchair does not mean they are also hard of hearing!

I was at the vets getting my cat updated on her vaccines. The veterinarian’s assistant came into the exam room to get Donka, and noticeably raised her voice when she talked to me.  Then my personal assistant asked her a question, and the veterinary assistant’s voice went back down to a normal octave. 

It was blatantly obvious, however until my personal assistant pointed it out to me, I was able to ignore it. I think I have grown accustomed to blowing off people’s flagrant misconceptions of me. It is not something that I consider worth getting myself all worked up about!  I figure if I am around people that have any misconceptions about me long enough, they will soon learn that I’m not hard of hearing, or simple minded.

The best advice that I can give you when you are not sure how to treat someone that’s obviously different from you, is to treat the person like you would want to be treated!  I believe that if everyone made treating people with respect an every day pratice, the world would be much more peaceful!  So, now that you know, act it out, and encourage other people to do the same!

Knowledge is Power #1

12/12/2008

 I have decided to periodically write about words or assumptions people have that really bug me.   I’m premiering, Jan’s vocabulary Tips of do’s and don’ts, and other such trivia. 

 

My first word is,  powerchair.  My powerchair gives me the freedom to get me outside and into the community, without being pushed in a manual wheelchair under someone else’s power. 

 

When I got my first powerchair, I immediately went to the places I had wanted to explore.  The barnyard sat high on my list, and was readily available   I was twelve, okay my world was the farm.  Within fifteen minutes I found myself stuck among the sawdust piles.  Oh, the joy of discovery! 

 

I do not own an electric chair, as they are solely found in prisons.  When someone refers to my powerchair as an electric wheelchair, I get this vivid mental snapshot of me strapped to you-know-what!   So, now that you know, pass the knowledge around! 

 

Here is my disclaimer!  Some people may actually like the term, “electric wheelchair”.  Just use your best judgment when picking out the words you are about to say. 

 

While I am at it, I would like to tell readers that what you are reading comes straight from my life experiences, my thoughts, and ever so randomly my beliefs will seep into my writing as well.  It is not my wish change anyone’s minds.  I just want people think about things differently for a few seconds, or maybe longer!  I gladly welcome your comments!  However, please don’t send comments that you wouldn’t want to receive yourself.    .   

Posted at 5:31 PM by useuraac@yahoo.com