04/05/03

May 10, 1999.

    Approximattely around April 22, I developed problems with my 
vision.I was not able to look to the right without seeing double or 
seeing fuzziness. Dr. Wallack was not in the office the week of 
4/26. I was able to make an appointment for 5/4/99. I saw Dr. 
Wallack in the Kokomo office for my checkup. I was still having the 
same vision problems.He felt that the problems with my vision 
stemmed from my Multiple Sclerosis.I was placed on Prednisone 
therapy P.O. I started taking the Prednisone 5/4/99.On Saturday, 
5/8/99, I woke up with this small black fuzzy-like circle in the 
middle of my vision. By the next morning, when I woke up the black 
fuzzy circle had covered 3/4 of my eye. By the time I was ready for 
bed, I could not see out of my Right eye at all. My balance plus my 
depth perception has been affected.I'm wondering if I should go on a 
medical leave or not. I'm also going to check on Disability. I don't 
think I should be working until this situation improves. Hopefully 
it will improve, but I'm not certain that it will. I will talk to 
several people today and see what my options are.I will try to keep 
a daily log.

09/21/02

5:45pm

By now the Wake for Carl is probably winding down.  I hope all is 
going well up in KY.  I have thought about that crowd all 
day...hoping that the air has been filled with the joy that Carl 
brought to so many lives, especially Carol's.

My older sister just called to ask if I had a Plan B yet, in the 
event that Hartford decides this week to close my claim and end my 
income/benefits.  I reminded her that if I lost my benefits I would 
have to move out of my apartment.  She asked me where I would go, 
and I told her I had no clue where I would go.  She wanted to know 
what welfare I was eligible for and I told her I didn't know 
that...I don't want to know.  But, the question did force me to go 
online and find out.  Here in Florida I am eligible for Food Stamps 
and possibly Medicaid, but I am not eligible for any other welfare 
benefits, like Temporary Cash Assistance (up to $2,000) because I do 
not have any children under the age of 19 yrs living in my home.

I am so very sad that no family member has even hinted at helping 
with a roof over my head if I loose this one.  The pain of that is 
so intense I can't even begin to describe it.  I might feel 
different if I knew that they too were having a difficult time, but 
they are not.  Both my sisters have room for me to hibernate in a 
spare bedroom for a while, but neither of them will allow me to take 
up space in their beautiful homes, especially with the thought of me 
costing them money for extra water use, groceries, etc.

It is said that you find out who your friends are when the tough 
times come along.  The same is true for family.  So, I will sit here 
for a few more days, waiting to hear what Hartford has to say.

I did get a referral to a neuro-phychiatrist.  I know that my mother 
will pay for my medical insurance, if necessary.  Which is a great 
blessing.

09/14/02

11:16 am

The hardest part about being at the proverbial fork in the road is 
knowing that you have to sit on the bench, in the scorching sun, and 
wait for the answer to come telling you which fork to take.  
Sometimes the choice is not yours, but is in the hands of someone 
else.

Well, I slept on my dilemma.  Can’t say today looks any brighter…so 
many scenarios ran through my head last night and this morning as I 
lay in bed trying to convince myself to get out of it.  I look 
around at the little that I do have and know that someone in Atlanta 
will make the decision as to whether I will have any of it in my 
possession on September 30th.  It is one thing to be broke, it yet 
another to have nothing material that belongs solely to you.

Yes, I know there is charity out there, but that is not a permanent 
alternative.  

I did email my mother, oldest daughter and both my sisters last 
night, informing them of the events of September, Friday the 13th.  
I have a good idea what their reaction will be; nothing helpful for 
sure.  I also informed my son, who lives a couple of buildings from 
me in a tiny apartment…his first…of the events of Friday.

I have spent the past 20 years comparing myself to my sisters.  I 
know it is not a good thing to do, but he contrast is so severe.  I 
was the single mother, who struggled to make it with two teenaged 
daughters…one of whom had a baby at 18 that I raised until the age 
of 5…and a troubled son who, once I found placement for him at age 
14, spend six years in special programs and two years after that on 
the streets of Orlando and Atlanta…before finally joining the Army.  
Then when all that was said and done, and my life should finally 
become quiet…I hear “you have Parkinson’s Disease”.   And with that 
comes early “retirement”…what a joke that word is.  

Then there are my sisters.  Neither raised children.  Both are 
soundly, financially comfortable and currently healthy.  If I 
thought I could depend on them to help me financially through just 
one month…Oct…while I figured out what to do with myself, I would 
pick up the phone and pre-arrange the worst-case scenario.

I do have to question whether the whole of my life this is 
punishment for living a bad life…not making good decisions, etc.

So, at the end of the month, when I hear the “determination” by 
Hartford…if it is benefits denied, I will give my furniture to my 
son and youngest daughter…what little I have…and go sleep on someone 
sofa…or move to California.   Who knows at this point in time!!  I 
wish I did.  Living in limbo is not fun!!  Sitting on this bench in 
the scorching sun is not very comfortable.

If the determination is that benefits continue, then I will have to 
look at whether I should continue to be involved in the PD 
community, or simply be forced by Hartford to sit in a chair and 
vegetate for the rest of my life.

Several have suggested writing to my Representative and contacting a 
reporter of the local paper (which is owned by the New York 
Times).   I will do the former, but not ready to do the later in 
this small town.

We do have a charity program here in this county for medical bills, 
etc.  If you qualify, they put your picture in the newspaper…how 
lovely!  And there is the United Way of Central Florida.   Hummmm!

09/13/02

I saw my neuro at the Tampa MDC this morning and discovered that my 
long-term disability carrier is trying to get me to return to work. 
Needless to say, my doc is livid.
Because I can do needlework.
Because I was able to prepare a 22-page response to the three SSDI 
questionnaires I was required to complete. And because the 22-page 
response was grammatically correct with organized thoughts and 
correct terminology.
Because I can drive the two hours to my mother’s home.
Because I have been able to organize a support group.
Because I can pay my bills.
Because I can do these things that means that I can 
lift/push/pull/carry, finger, feel and grasp. Because I can open and 
shut the car door, lift a carton of milk, drive myself.
Etc.

Let’s see, the 22-page document took me a week to write, and was 
edited for grammar, etc. by a friend before I sent it into SSDI.

When I get out of the car at my mother’s place I am dopamine 
deficient, have a hard time walking and need to lay down and rest. 
(They also referenced that I drive the same distance to a PWP’s 
house.)

The support group takes about 16-20 hours a month to maintain, if 
that much.

"Ms. Stephenson has Parkinson’s Disease, however it is recommended 
that these patients keep acive for as long as possible. Is it 
possible that Ms. Stephenson’s inability to return to work may be 
more a matter of choice than to a severe worsening of her disease 
process that precluded all work capacity?"

"If you do not have a response within 10 days, then I will assume 
that you agree with the restrictions as outlined in question #4 and 
that Ms. Stephenson has the ability to continue her occupation full 
time with the above limitations."

No one would hire me anyway. First, they wouldn't be able to read 
what I would write on the employment application. Then they would 
take one look at me and find a legitimate reason not to hire me.

This is more scary then when they sent someone to follow me in my 
car for a week. That was about three/four months ago.

09/09/02

1:00 pm

I just finished writing a letter.  How interesting it is when you 
actually put your thoughts down on a piece of paper.  It was okay 
until I got to the part about me!  Then I scared myself!  And they 
say stress is our worst enemy.  But they done't tell you how to 
avoid it.  Well, there are alot of "ifs" in my past that if they had 
or hadn't happened, maybe I wouldn't be so broke and without a 
retirement plan if they had or hadn't happened...LOL.

I wrote that my son was doing well with the national retail auto 
parts retail chain he works for.  He has just received a $1.25 per 
hour raise, and was promoted to Team Leader.  He currently works in 
the most profitable store in the region.  He is in his own apartment 
and has also joined the Army Reserve (was in the Army for 6 years).

My youngest daughter and her daughter are still a mess…nothing new 
there.  They go back to court on October 10th.  The judge will make 
a determination on that date as to whether my granddaughter will 
stay in her home or be sent to a juvenile facility.  At the last 
hearing, the judge set the child’s home curfew at 8pm, and she is 
adhering to that.  The husband/step-father is still in the picture, 
although they are separated.  The poor relationship between him and 
the child continues.  

My oldest daughter and her family are doing well.  The 4 yrs is 
growing like a weed.  The 21 mo already has a three-word 
sentence, “I see [word].”  He can place the appropriate word in the 
[word] box.  The 7 mo is pulling himself up and crawling.  Son-in-
law has just finished plotting his next novel and will start writing 
soon; he teaches Literature and Film at Penn State.  My daughter 
started graduate school (one course at a time) last week, and is 
still working part-time at the community college as the Resource 
Center Manager.  And if that is not enough, they share the daycare 
responsibilities.   They are wonderful parents.

Then I got to the part about me:

...or maybe I actually need a psychiatrist at this point in time.  I 
don’t know.  My life is a wreck.  I am going to speak to my 
neurologist about switching from Celexa 40mg to Wellbutrin or 
something else.  I am back to crying all the time.  

The support group I helped start is trying to get a foothold in 
Central Florida.

My partner is back in California...a long story.  

I have to put my foot down with my family about where I will be 
living before August of 2003 if my SSDI hasn’t been approved by 
thent…going to my mother’s this week to talk about this…she doesn’t 
know about my agenda.  

In August 2003, I loose my employer/COBRA medical insurance, and at 
that time, if my SSDI is not approved, I will have to begin to 
assume 100% of my medical costs and the approx. $600 a month for 
drugs.  So, I won’t be able to support myself.  

If my SSDI is approved before August 2003, I will be able to obtain 
an 18-mo extension on my employer/COBRA medical insurance.  Then I 
will have a little longer before I have to worry about medical 
coverage.  Medicare due to approved disability doesn’t kick in until 
you have been on SSDI for two years…I think that is right.

Even right now, I have less then $200 a month after bills and $50 a 
week for groceries…it’s that damned car payment I finally had to add 
to my budget!  I have looked into Independent Living facilities, but 
I won’t be able to afford one of them alone…ever! 

So, that about sums it up.

09/04/02

9pm

Well, the sign went up today.  I went out to the stitch shop to 
purchase some Linen, some threads, and bell pull hardward for an 
item for Jitterbut.  Then, when I arrived back home, I parked in 
front of this sign...that belongs to me!!  Such a strange, surreal 
feeling.  How can it be correct that I, at age 53 and a half have 
a "sign"...one of those signs?  Why do I feel so guilty for having 
the sign?

When you are a Stitcher you belong to a "family" of chatters.  You 
are always known by your first name, you know the shop keeper by 
their first name (I am Carolyn, one shop owner is Carolyn, there 
other is Carol...LOL) and end up spending more time in the shop 
chatting than buying.  Today was no different, except that the shop 
owner and another shopper, wanted very badly to know what was up 
with me today...why don't I just say it out loud, rather than keep 
them in suspense...hummm...what a good question.  I did note that 
the other shopper, and ICU nurse, hung out until I left and then 
took the chair in front of the cutting table (same thing as a 
kitchen table) I had just vacated.

Oh yes, the support group flyers made it to the front seat of the 
car, but I was too tired to go to the post office for stamps after 
the stitch shop.  So, and outing for Thursday.  Always good to get 
out and smell fresh air.

09/02/02

4:00 pm

Well, I didn't do the task of the poster for the MDC until 
today...oh well...it did get done, and I will drive to Tampa 
tomorrow to put them on top of the TV in the waiting room.  And I 
haven't mailed the flyers to the support group membership...well, 
they will get mailed tomorrow...I hope...LOL.  I did get one website 
redesigned...well on it way I hope.  I haven't stitched a stitch in 
three days!!  Yes, I admit I do too much, but...

It is so hard to work in moderation.  So hard!  Sometimes I think I 
should just chuck it all and sit on my rear-end and stitch my life 
away.  I guess my rear-end would hurt as much sitting and doing that 
for hours, as it does by sitting at the computer for hours.

Living in an apartment complex has it challenges and one of them is 
parking.  You never know where you might end up, especially at 
night, or how far from your door you might have to walk.  Saturday 
was a lousy symptom day and broke down and did something I had told 
myself for a long time was not necessary.  I marched into the 
complex office, handed them my rent and my disabled hangtag and said 
I wanted a parking space.  Still not sure I did the right thing, but 
I did it anyway!  My immediate stairwell neighbors will clearly 
understand; we know each other well.  Now the two guys with the 
respective hugh trucks that park in front of our building, where 
they don't belong, will be resentful...hey, can't please everybody 
all of the time!

Then, I got back in my car and went to the grocery store.  I walked 
in the foyer to find one teenager playing with the stores 
complimentary wheelchair, and another teenager playing with the 
stores complimentary electic chair.  Gave them both a piece of my 
mind.  Kids today...some of them are so disrespectful of property.

Then there is the poor cashiers who usually don't know whether to 
wish me a good afternoon or ask me if I'm okay.  Well, some of them 
are getting use to me!!

I have been thinking about my support group co-leader.  She is 37 
yrs of age, and when I saw her about a week ago, she was telling us 
about her DBS.  My heart just aches for her...so young...three 
little ones at home...youngest 9 mos.  She was telling us about what 
a bother the lead for her DBS was; how it tugged and pulled when she 
turns her head.  Hell of a way to live the decades ahead of her.

09/02/02

August 31, 2002 - 11 a.m.

Well, hello journal…been gone so long!!

Just woke up from one of my marathon sleeps…10 hours…wow.  
Happens when I do too much.  I don’t know if it is work 
compulsion or OCD…hey, are they the same thing…but when I 
get started I just keep going.  The worst part of the 
marathon sleeping is that I wake up with sooooo many hours 
off that it takes me about three hours to wake my body up; 
standing up straight, not slurring my speech, no tearing 
eyes, etc.  Oh yes, then there is the RLS from no meds, 
the “popping” leg muscles, the aching…okay, enough is 
enough…LOL

I remember the good old days when I would work a long week, 
and then wonderful Friday night would finally arrive.  I 
could marathon sleep, wake up refreshed, go out and run 
errands, watch a movie on TV, enjoy the evening, etc.   Now 
it is just the opposite, sleep too long means hours of 
misery!!

Why the marathon sleep.  Well, Thursday, spent hours online 
looking for the right graphic for the Support Group website 
so that I could announce the September and November website 
events pages…I am the webmaster…LOL.  So, excited…we have a 
Pharm.D. to speak in Nov about PWP medications!!   I 
dabbled in The Pipeline Front Page…trying to find an 
alternative homepage design that I actually like.  Started 
a needlework project for Jitterbug.  (Jes received my 
Jitterbug box that day too…full of needlework to sell…
yea!!)   I spent a little time helping to moderate the 
Dumpster chat room…not much time though.   Friday, was 
preparing support group flyers to mail to the membership 
and flyers for the MDC waiting room about the Sept mtg.  
Dabbled more in the Pipeline homepage design…searching for 
an online services for background templates…maybe I am too 
picky…hey, I think someone told me that recently…LOL (love 
you guys bunches).  I do have one very, very poor character 
flaw…it is my RoboCop demeanor…hard as I try, I just can’t 
change it…sorry folks, but I am sad to say, it does put 
people off…makes me sad inside sometimes to watch it 
happen.  Also, Friday, hope we…me and two others…solved the 
Pipeline hosting service change over problem.  Pipeline is 
my favorite project right now…well, maybe parallel to the 
support group…truly provides me with the challenges I had 
when I worked…constant problem solving, always a challenge…
and lots of OJT…always something new to learn…best part of 
life.  The talent in the Pipeline Project team is 
incredible for me to see.  Educationally, I am low-man-on-
the-totem pole, but don’t care…learning has been a life-
long process for me…lots of OJT over the past 20 years…LOL.

So, much to do…so little parkie time to do it in.  The 
hardest part to accept is the work-then-rest, work-then-
rest part…hate that.  I just want to work…not take little 
rest breaks in the middle…breaks the creativity mode, 
breaks up the thinking process.  But this darn PD body says 
I have to do it!!

Today is support group poster day…for the MDC waiting room…
and Jitterbug sewing.   Well, after the old body wakes up 
that is.  Gosh I even have a temporary sore throat from 10 
hours of snoring…now that is funny!!!

Well, journal, I best go before my forehead actually 
touches the keyboard!!

07/26/02

July 23/24, 2002
Well my dear Journal, I am back!

I got out of bed to write this post. the content kept going 
over and over in my mind. So I got up, stopped the defrag 
running on my computer, which was at 28%...LOL...to write 
this down so I could then go back to sleep. I know I am not 
alone with these thoughts...for sure!
A year and a half ago I could multi-task without thinking 
about it, listen and quiet employees who were denied long-
term disability benefits, manage a beneficial staff 
meeting, keep up with my directors wants, needs and 
desires, manage my department, etc.and then there was my 
personal life…this is about the need to feel a contribution 
of life.

Here I set at 2:30 am in the morning…totally 
exhausted...should be sleeping “like a baby”, NOT...totally 
crashing from four long days of working, and loving every 
physically tortured minute of it...AND THAT IS A FACT…
pondering whether I will see the brink of self-destruction 
coming if it ever arrives. I know it is not close, but one 
has to keep that thought in the forefront...keep it on the 
front shelf…constantly reflecting on the possibility.

My mind wants to continues to function at the pace that is 
described in the second paragraph...it still has the 
skills...but my body just can’t keep up. You know...that 
battle between my still sharp mind, my PD symptoms and my 
meds side effects...a torturous battle!

Being creative and contributory is
the hardest thing for me to deal with against the damnable 
disease.
the hardest things to accept the lose of.
something I never want to give up.

Like my fine needle stitching, which has been my hobby for 
over 20 years. I have always said that when I can no longer 
stitch, you might as well put me out of my misery!! Well, I 
always took thinking and processing and my 
logical/analytical mind for granted. How much longer will I 
maintain that?

Some days I feel...well, suffice it to say that I resent 
having to work a few hours, take a two hour nap, work a few 
more hours, take another nap...you get the picture. I 
resent the fact that if I work a long day without a nap, 
and do this for a couple of days straight, I pay the price 
of crashing for two days (sleeping most of the day). And 
for those of you who know what I have on my plate these 
days…and rather full it is…no preaching!! 

So, here I sit tonight, a little resentful, a little sad, a 
lot disappointed, but will forge ahead. AND I will look 
myself in the mirror each morning and make sure I keep 
track of myself so that I can keep self-destruction at bay.

Heaven knows I wouldn’t want PD to progress any quicker 
that I might.

07/26/02

Yep!  It's working! LOL
Peg

03/01/02

pwnkle testing this journal for spacing

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03/01/02

March 1, 2002

Today is the day!  Today is the day I am suppose to receive a phone 
call from my LTD carrier with a final decision about my claim.  I 
have knots in my stomach.  If I am denied again...wow.  I will have 
to ask my younger sister to pay to store my furniture while I file 
for SSDI.  I will have to ask my older sister if I can move in with 
her for the duration.  Neither will be happy.  But, I don't know 
what else to do.

I feel so very guilty for not having planned for my "retirement" 
better.  I am penniless, owe two months of bills.  But then, my life 
with my son, and my life and helping to raise two granddaughter's, 
didn't afford me much allowance to save much.

So, here I sit.  My financial future is sitting on someone desk

03/01/02

March 1, 2002

I had lunch yesterday with a friend from the company I worked for 
prior to retirement.  I had to go into the lobby of the building to 
have the receptionist let her know I was there.  I hadn't been in 
the building since I left the last day of work.  I sat for a few 
minutes while I waited for her to come out.  The smells were the 
same, the people were the same, the weekly-fresh flower arrangement 
was on the table, the busyness was the same...I almost started to 
cry, but Sharon rescued me, arriving just in time.  That single 
event made me see just how isolated my life has become...isolated in 
the sense of not being physically around people all day and the 
wonderful hussle and bussle was.  And, how much I miss it.

Sharon had told me over the phone that morning that I had to come 
back into the building after lunch and see one of my clerk from my 
department.  I had attended a health clinic the first week of Feb 
2001. Dr. MacDougall's clinic on being a vegetarian. (Almost all of 
the company officers follow the doc. So, the company sponsored the 
clinic and I was asked to attend.)  

This young woman...the clerk...was only 19 yrs old at the time...and 
one of the best clerks I had.  Her cubical was just outside my 
office door and we talked a lot about stuff.  She wanted to hear all 
about my adventure to the clinic.

We talked a lot.  NOT about dieting...she had tried them all and I 
knew that.  She had come to the department just a couple of months 
before somewhat over weight, and had gain another 30 pounds...she 
was very overweight.  We talked about self-discipline.  We talked 
about life choices.  We talked about our choices of food being 
colorful and tastful and enjoyable.  We talked about nutrition.  We 
talked about the difference between rumor and preconceived notions 
about food.  We talked about studying about food and making personal 
choices.  We talked about everything except dieting and how much 
weight she had gained.  Life is only a bunch of personal choices, 
for sure. 

She took my book about being a vegetarian...the one the Dr. 
MacDougall wrote.  She read the book and brought it back..."I'll 
think about it".  A couple of weeks later she asked for the book 
again.  She read the book through TWO more times.

To date she has gone from a size 20 to a size 12....goal is a size 
8.  She is about 5'2", so you can only imagine what size 20 was for 
her.  I have been so proud of her.

I was great to see the whole department again.  They haven't 
changed.  Only I have changed....and changed a lot I have.  It is 
like my lunch partner said, "You look good.  I don't know what I 
expected."  

I'm still not sure what that meant.

02/26/02

February 26, 2002

This has been one of those "hard places" today.  Had some technical 
writing to do today.  I took my meds this morning, twice, and the 
horrible fatigue and sleepiness set in.  I tried hard to concentrate 
on the subject so that I could write, but alas I couldn't put my 
thoughts together.  So, as I had done so many times when 
working...which I know I shouldn't do...I decided to not take my 
afternoon meds.  So, here I was all afternoon...shuffle here, 
shuffle they’re, stoned faced, etc.  But, I could concentrate...lol. 
Not funny at all actually.

Ya know, with PD....you are damned if you do and damned if you 
don't.  These days the other hard part is for me to determine what 
my long-term PD plan will be.  Trying to speculate how long I can 
continue to live alone and with whom and where I will live..."that 
is the question".

I visit a parkie friend on the east coast of Florida from time to 
time.  She has quit severe offs and I see how her face looks.  I 
have suddenly realized that my mouth looks the same way hers does 
when off.  Hummm!!

I did talk my walk today.  The best part of my daily walk around 
three large ponds are the sounds of the fountains in each pond, the 
ducks, the birds and the turtles sunning themselves on the grass.  
It is so peaceful and pretty where I live.  The silly ducks...as 
soon as you come near to them...quack, quack, quack...get up and run 
to the water.  They are so funny to watch.  And the babies...so 
tiny...a new bunch recently...ten little ones following mom...oh my 
oh my.