Monday, September 10, 2012

Earache Continued

Earache Continued


This earache is holding on and showing no signs of easing. Mom looked in it. She said, "It looks better -not as red or bloody."

I'm not running a temperature, nauseous, and my neck  isn't stiff. That lends me to believe it's not going to escalate to spinal meningitis, but I'm tired  of hurting. It's getting REALLY old.


 Desire & Reality


I've had a bit of a reality check. I'm not progressing on the book as quickly as I'd like. The mind is willing, but the body isn't. Grrrrrrrrrrrrrr!  I type with one finger. (Sad thing is that before my stroke I pecked at the keyboard with two.)

I need to complete my book. My hope is I'll complete it, land an agent, and publish it with a reasonably well established publisher. Writing and speaking  are my hopes for earning an income. The simple truth is I can only afford to live so long - something everyone wrestles with is supporting themselves. My challenge is compounded, because I require 24 hour care and HUGE medical expenses. I'm loathe to be a financial burden on my family.

I've given myself three years to get an agent, and publisher.In the first year I want to finish this book. While I'm pursuing an  agent and publisher I want to finish the edit on my middle grade novel. I'm halfway through the first edit.

So, in my looooooooooooong drawn out way I'm calling a temporary halt to blogging and will focus all of my attention on writing my memoir. Karen and I are discussing whether she'll carry on ith this blog or if she'll set up "shop" elsewhere. We'll let you know wen we do.

Writing Progress

A Journey of Laughter Through  Tears Part II Rewrite Word Count 11,093
I'm making steady progress, but this DARN ear isn't  helping.

By Jessica Aday Kennedy
The Differently-Abled Writer & Speaker

Thursday, September 6, 2012

Hammered Pigeon Poop

I've been under the weather the past couple weeks. My sinuses have been giving me fits. I've had an earache for about a week and a half. I figured I was building excess wax. Mom got some stuff that breaks up wax, and we flushed it  with a bulb syringe. My hearing was muffled,  and the pain was worse.

We made an appointment with my ENT  (Ear, Nose and Throat Doctor), Dr. Altinau at Medical City Dallas. He's been my doctor since I had  my stroke. He placed a tube in my ear as a preventative measure against spinal meningitis.

My streptococcal pneumococcal bacterial spinal meningitis originated with an earache in 1998. I had Otitus Media the doctor prescribed some drops. The proper treatment wasn't drops. My doctor prescribed Augmentin today. When I was given the wrong medication the earache got worse. I had an opening in my skull. When the pressure built the infection built and it drained in the path of least resistance.

It crossed the brain-blood barrier.  The infection went into the meninges and traveled to my spine where it grew unchecked, because there were no white blood cells in the spine. My brain swelled and had no where to go. I  had a brain stem stroke, infarct, and herniation. I descended into a coma and woke up 2 weeks later a ventilator-dependent quadriplegi.

So, it's understandable we get a bit panicked when I get an earache. I'm in a lot of pain. The doctor said it could  take ten days for me to feel better.

I didn't get any writing done today.

Monday, September 3, 2012

To Speak or Not to Speak

To Speak or Not to Speak

I don't speak audibly unless someone adjusts my ventilator and artificial trach. In fact for the first four years after I became ventilator-dependent I spoke only during IPPB treatments, because my leak at my stoma was too great. Not enough air crossed my vocal chords.

The trache sits above my vocal chords. There's a balloon that blocks secretions from  sliding into my lungs. When the balloon is deflated air can cross over my vocal chords.  When it's inflated (it's normal state) I'm silent, and people must read my lips.

It's horribly isolating. I'm mute and must observe and not take part much of the time. If I had full use of my hands I could speak with sign language. I'm classified as a quadriplegic. My right arm is immobile and I've got only partial use of my right arm and hand. The ulnar nerve was affected by the stroke, and my ring finger and pinkie finger curl and my hand strength and dexterity is minimal.  

The Bivona talking trach enables me to speak for limited periods of time.  In order to speak I've got to consciously trigger the ventilator for each breath. It's similar to singing. A singer must breathe deeply in order to hold a note. If I forget to trigger the ventilator to breathe then I wouldn't get a breath.

When I learned of the custom trach a world of opportunity opened to me. The frustrating thing is that it's so expensive. I change my trach every 6 weeks and must decide if for that 6 weeks I will be silent or speak. The cost is roughly  $250 for a regular trach and over twice that for a talking trach.

Karen returned to California and I can schedule any speaking engagements for October. In the interest of saving money this  time, I'll opt for silence.  I 've enjoyed three months of speech during Karen's visit.  I've got no reason or overt need to speak other than just WANT.

Writing Progress

A Journey of Laughter Through  Tears Part II Word Count 5,816
At 7:00 pm I fell asleep and didn't wake up until 10:00 pm in a panic, because I hadn't blogged or done my  Bible study. Sorry I'm late.




By Jessica Aday Kennedy
The Differently-Abled Writer and Speaker






       

Saturday, September 1, 2012

Nystagmus

Nystagmus

I acquired the Nystagmus as a result of my stroke. The disorder causes my eyes to jiggle and not in tandem. They each jiggle at their own pace. So, I  shut one eye when I read and enlarge the text which helps. The doctors said I'd never be able to read. I CAN read, but only in small stints.

The major problem lies in when I'm reading from one line to the next (tracking). The doctors claimed it couldn't get better. I've learned to adapt in a few ways. Bigger type is easier to see.If I close one eye, I can read more easily, because only one eye is jiggling.

Contrary to what the doctors told me eye exercises have lessened the eye tremors.


Writing Progress

A Journey of Laughter Through  Tears Part II Word Count 3,913
A headache and lethargy are taxing me. To my frustration it's slowing me down. I'm off to bed early this evening.




By Jessica Aday Kennedy
The Differently-Abled Writer and Speaker



Friday, August 31, 2012

Preparing the Home

Getting Ready to Sell

 
 
I took a good long look at the cabin yesterday and realized I have about 200 things to do before I can try to sell.   The yard is a mess but a little tidying will do the trick once summer goes away.
 
Inside?  Not exactly the same.  Cleaning and purging is a must.  I didn't realize until I came back from Texas how cluttered our little home is.  I have spent the last week shoveling out our laundry room.  This is the "catch all" room of  our house.  If it doesn't have a home, an item usually ends up here.  Unfortunately, it is more like a purgatory for used items.  These things have served their purpose but are really of little or no value except to the person who owns them.  They are definately headed out the door but the decision to donate or trash still needs to be made.  I put a lot of items into their next journey and I feel magnificent about it!
 
I still have tons to go through and clean but I find the only thing that limits me are my desire, health and ability.  When I absolutely can't do any more, I sit down.  Then I take up the project after a rest or until I have to start dinner!   There is always something, so I guess I have job security!
 
 
Enjoy your Labor Day Weekend!  I will be doing a bit of laboring myself but not too much!
 
 
Until the next time.....
 
Loves,
K


Thursday, August 30, 2012

Learning to Prioritize

Learning to Prioritize

Tuesday was  my day to blog. I was also supposed to write  on my memoir. I did neither. I worked on my Wordpress blog and secured a domain name www.jessica-aday-kennedy.com. Well, my Nystagmus makes reading difficult. Extended periods of reading wears me out and gives me a doozy of a headache.

I already knew this.Yet, I didn't do things as I should. I did what I wanted, then failed to do what I should.  What all of us, the disabled, have to keep in mind is that we can't always do things we want to because the body doesn't always cooperate.

So, each day I'm starting a new way of doing things.
1. Make a To Do List.
2. Rank items by importance.
3. As I accomplish each task I cross them out
***Before I write a new list, I review the previous days list and add uncompleted tasks to the new list.
***I don't beat myself up for  what I didn't do, but thank God for what I was able to accomplish.



Writing Progress

A Journey of Laughter Through  Tears Part II Word Count 3,268.

The rewrite of Part II is under way. Chapter 1 has turned into Chapters 1 and 2. I'm easing into chapter 3 and as I thought it would be, it's waaaaaaaaaaaay better than the first time.

By Jessica Aday Kennedy
The Differently-Abled Writer and Speaker

Wednesday, August 29, 2012

Pain makes itself known

Just One of Those Days




I am just having "one of those days."  I didn't sleep well last night...up and down all night....not feeling very well.  Unfortunately, this is becoming a very unwelcomed trend in my life.  My abdomen is large and hurts and it is tender and painful. 

Whoa is me!!!!  LOL  I hate even saying these things aloud because I cringe when I hear it .  I am not crazy about hearing the words out loud because it feels like I give the pain power I don't want to concede to it.  That may sound completely crazy but I live with pain.  It has become a constant companion to me---never welcomed and irritating----like an in-law.

Keeping the Power 


It makes me a little crazy to have to work around this constant irritant.  I have to go ahead and live through the pain without giving into it.  This is sometimes easier said than done.

I know I need to go in and clean the shower, scrub the toilet and do the bathroom floors.  I know the chemicals and the motions are going to hurt---but how long can I live with that dirty room????  I'll let you know which wins---the pain or the dirty bathroom!

Squeaky's Pals

 
 
Research continues as we travel this labyrinth.  There are sooooo many things to consider and keep in mind.  Making sure we are a safe, dependable and interesting place to visit and get help is so important to us.  The more information, the better.
 
 
Well, till the next time!
 
Loves,
 
K



Monday, August 27, 2012

Volunteers????

Hello Friends!

These are very busy days.  I don't know about you, but this is my favorite season of the year.  The weather here is starting to cool down....This time next month we  will be in full-on Autumn.  I feel like this has always been the time of year for preparations.  I think it harkens back to harvesting for winter--when times are lush and settling into special times with family and friends.

I am so busy knitting to make some money to afford my non-profit activites!  I am enjoying the creative side of this immensely!  This is what I would do every day if I thought I could.  I love the end results of knitting and beading and handiwork.  It really boosts my confidence when I make something that I truly believe has value and somebody might desire it!  Too cool!

Squeaky's Pals is moving along---I am slow but sure and honestly, I think we could use some help. 
There are tons of projects that need to be done and Squeaky is a superior designator.  If there is anybody out there with technology experience, writing, legal, blogging skills, please let one of us know.  I am sure we could put you to work in the blink of an eye.

I am also looking for help with editing video.  If you know anybody who has this skill set, please let me know. 

Well, gotta get to work!  Until next time....


Loves,
K

Sunday, August 26, 2012

Poor Poor Pitiful Me

Hello Friends! Well, this has been a very busy weekend. I have done all the laundry,did some housekeeping (not as much as needed), cooked some food for my honey and did some work outside. I also got started on trying to find a techie for redoing our website and blog. I am doing some work on Etsy to get started selling my handmade items. I am accumulating a ton of info on local colleges and am somewhat surprised at the number of tech schools for medicine as well as computer design. Squeaky gave me some advice about trying to stay away from depression. She told me to set a schedule and stick to it! If I could do that I would have a job! That is the primary reason no body will hire me. I can't guarantee that what I did today I will be able to do tomorrow. Some days I am in bed all day---the next I could be very productive but I have to admit that those days seem less frequent. The prescriptions I take for pain are not always effective but they are always narcotics and therefore make it hard to focus and stay active for long stretches of time. So somedays I charge at life, some days I don't. My mind says go but my body says whoa! This is one of the most irritating parts of my disability. I look like a normal, healthy and energetic woman--but looks are very deceiving. I don't walk with a cane or a limp so my disabilities are invisible to the naked eye. I can put up a good front but in private, the story is quite different. I try not to complain because I honestly get tired of hearing myself so I sometimes don't say anything...trust me....I am no martyr but I do try to keep it to myself most times. So my questions is this: Just because I don't appear dissabled, does that make it tougher? Heck no!!!! I just need to voice my problems instead of trying to keep it all inside myself. Until next time! Loves, K

Writing Progress



Writing Progress
A Journey of Laughter Through  Tears Part II
At  6:48 pm Saturday I'm realizing I'm in REAL trouble reaching my writing goal for today and maybe  several days in the following week. I've been trying like mad to figure out what happened between 1998 and 2002. In 2002 is where my tax records for ex employees start.

I finally opened an Excel workbook and a worksheet for each year. It's really helped me devise a timeline that is filling the holes in my memory. There's a drawback. I've written more than 13 chapters and will have to rewrite and restructure what I've written to slide in what's missing.

It wouldn't be me if I didn't do things the hard and totally backward way, but I've got a game plan. I need a nap first. I've worn myself out.



Writing Progress
A Journey of Laughter Through  Tears Part II

It's Sunday at 12:30 pm. I'm just going to start Part II over. I had to do that with my novel for middle grade readers. So, my word count starts at zero, but will grow fast. (It better.) Because I'm going to cut and paste large portions of text I've written, but then I'll be adding the portions that I missed.

It is always written better the second time around. So, hopefully when I've finished a full first draft it will be easier to edit. I'm probably dreaming.



Writing Progress
A Journey of Laughter Through  Tears Part II
It's Sunday 6:50 pm. I'm working on chapter 1. Originally the chapter was 2,154. So far it has grown to 2, 555 words and I'm on the 8th paragraph. I imagine that chapter 1 will probably be at least 2 chapters and maybe 3.

It's Saturday at 11:45 pm. Chapter  1 is 2,724 words so far.
I'm getting a few ideas.   A check list of supplies might be useful to people going home with a patient. We could have used one. I'm composing it now

By Jessica Aday Kennedy

The Differently-Abled Writer and Speaker