Re: A Mind is a Terrible Thing to--MISPLACE!!

[Guest guest]

Hi, Liz,

A concussion can cause things like this to happen. I know. Been

there. Done that. It really stunk the first time, so when it happened

again, I knew what could happen, but didn't figure out that I would not

remember in time for me to not do those things again... Ugh! I had my SSDI

check put on Direct Deposit (found out that doing so reduces my bank fees),

then put Quicken into the computer and set up " alerts " so I would pay the

bills on time, etc.

I lost the combination to our safe and forgot my PIN number for the

bank card. Nobody worried about what was going on with me until I got

dressed to go to work at 10 pm and I had already been disabled for ten

years.... Oh, yes. A concussion can do some strange things with some

lasting effects. The problems are not usually permanent, but no one knows

the timetable for them to go away completely....

I do not have a caseworker. I gues I could, but I never bothered

when one was offered to me. My husband was able to help when I needed help.

Now that he is gone so much, I probably ought to check into getting one, but

I don't think I would want someone second guessing the things I do. I am

quirky enough without having to remember that " Big Sister/Brother " is

watching me.

If this " fuzzy thinking " and not remembering stuff is still with

you, then I think I would ask for a referral to a neurologist for his take

on the MRI study. My first concussion left me with no permanent effects.

The second one left me with a slight vision problem in the right eye. I can

still drive the car and that is all I cared about.

Dianne

[Guest guest]

Dianne,

Hi Kindred Spirit:)

Well I have a neurologist but we haven't got all the data pulled together

yet. I need that one more test......

I wish I did not have to have a caseworker..it's mandatory or I would

not!!! They are more trouble than they are worth (sorry if there are any

case workers on this list..... i'm sure there are some good ones but I

have really lucked out)

I am now authorised to see my new PCP and so i need to make an appointment

this week. I'm told he is very thorough. So let's hope so......!!!!!I'll

have to get him to work with the neurologist now as i need that blood test

to ocmbine with the doppler to give the total picture, they said.

Thanks for writing:)

Liz

~~~~~~

" The truly creative mind in any field is no more than this: A

human creature born (extraordinarily) sensitive. To him/her a touch is a

blow, a sound is a noise, a misfortune is a tragedy, a joy is an ecstasy,

a friend is a lover, and failure is death.--Pearl S. Buck

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

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[Guest guest]

Hi, Liz,

I am glad to know that your neurologist is working on this. Mine

was great and really helped me to understand that there *might* be changes

for me to deal with, but that the two of us would find ways to get past the

problems. Not all of my problems were due to the head injury, but the after

effects of the second concussion did nothing to make matters any better. A

thorough PCP is what everyone hopes to find. I have one and I hope that

your new doctor is one you can work well with for some time to come.

I have figured out that there is very little going on in my life

that I really need to worry about because normal concern is sufficient.

Figuring that out actually scared me, too. I mean, life is tough! Between

the things that everyone else has to do and the problems added by chronic

illness, I became overwhelmed mentally and emotionally. The stress I added

because of my fear and worry was just making everything worse. The stress

was wreaking havoc on my mind, spirit, and body. Things just kept spinning

out of control.

Did I mention that I have ADD? Attention Deficit Disorder makes

things difficult enough, but post concussion problems just about drove me

over the edge. I was already dealing with the symptoms of Lupus SLE and RA,

so the only choice I had was to do for myself what I needed to have done.

With some help from my dear husband and friends, I set about developing

systems and placements that reduced the steps I had to take to process

paperwork. I have now expanded that to every part of the household. I am

not talking about how far I have to walk, just reducing the things I have to

do to complete any task.

The first thing I did was go to work on my office/desk area. I

spend a lot of my time in here, as this is also my " fun " center. Computer

desks don't work for me. My neck, knees, and spine are the problem. My

husband bought a solid-core door, surfaced it in wood grain countertop

laminate and I have a huge work surface set on the bottom half of an old

computer desk. Everything I use everyday is within easy reach.

Hubby built a platform and added castors for the files. The files

themselves are in those milk crates that accept Pendaflex file folders. I

have an upright file holder between the monitor and the printer. The tower

in on the floor, but within reach of my right hand. An old bookcase with

" short " shelves (only short books stand upright on the shelves) is standing

on top of the " desk " and I keep notebook binders, software manuals, and my

various organizers in that. The phone is within reach of my left hand, as

are the pencil holder, memo holder, and other small supplies. There are no

drawers in this desk because drawers are only used for " permanent storage " .

In other words, I lose things in drawers! LOL!

Keeping track of things for the banks is done using my day-planner

which is also my handbag. I do not keep a lot of paper in the planner

because the weight can really be a problem. I have a zipped pouch in the

planner and that is where I keep things for the bank, pharmacy, doctor, and

health food store -- anyplace I go to where I want to remember what I have

to do there.

Okay, all of that is rather involved, but I used it as an example of

how I have made modifications to accommodate my inabilities and get around

the things that used to derail me. The rest of the house is being whipped

into shape the same way. If it hasn't been used in years, then it is either

given away or thrown away. I had to stop letting my " I wants " keep me from

making this home a place that I did not dread having to care for. It is

easy care or it isn't there.

I have turned into the " Consummate Pre-Planner " according to my

husband and friends. I plan the celebrations we have for holidays. I plan

the seasonal maintenance for the house and vehicles. My husband is almost

never here, but he can count on things being well-managed while he is away.

At home, there is a phone in three locations of the house. I have a cell

phone with me when outside the house because hubby wants it that way (I

really didn't want one, but now that I have it, I don't know why I

objected -- it is less expensive than the land line).

That is probably more than you wanted to know, but I offer it in the

spirit of helping you find similar ways to simplify your life. Simplifying

things has made all the difference in my " self talk " -- you know, the things

I say to myself when no one else can hear me... The things I say to myself

can do more harm than any illness, so I watch closely what I say to me. I

can either be my own good friend or my own worst enemy. Above all, my faith

has brought me this far and I am looking forward, not back, so I can enjoy

my adventures on this journey.

Dianne

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[Guest guest]

Dianne! I have ADD too and also am Bipolar.

My ADD has definitely become more pronounced as the result of my head

injuries.. (and the bipolar was brought on by one 10 years ago where a car

tire exploded in my face.

The " long timers " on here have heard this before but... for you and other

newbies. In my life I have sustained a number of head injuries.... I fell

off the bed as we were horsing around in high school.. jumping... Then I

got an concussion during a car accident where my head was slammed into the

rear view merror, breaking it in half. The car tire.....a respite of a few

years.. and then in February of this year a box fell on my head at Walmart

(stack three high in electronics) (I almost typed a boy fell on my head..

eeek) and gave me a concussion and then in April I fell hitting my head on

a lamp post in the house and my bookcase.

I don't need this on top of the reiter's and sjogren's believe me!!

For the ADD i'm getting neurofeedback right now and it is supposed to help

with the reiter's pain as well. Problem though is that with all the head

injuries it is problematic--my brain is so sensitive that even a slight

adjustment of brain waves causes a stronger reaction... she has to go VERY

slowly.

Really, it's bad enough to be more physically limited but with my mind now

out of kilter too that's a low blow. I keep hoping it will clear up....and

we are checking for the cause and prevention of more strokes which they

found when doing the MRI for my last concussion.

As my daddy used to say-- it's a great life if you don't weaken.. ain't

THAT the truth:) Still smilin':) (i have to be REALY careful when

writing a letter as i type stuff i don't mean.. like i almost just typed..

still smoking... Well maybe i AM smokin----in some ways.. but not the

tobacco way:)

Liz

~~~~~~

" The truly creative mind in any field is no more than this: A

human creature born (extraordinarily) sensitive. To him/her a touch is a

blow, a sound is a noise, a misfortune is a tragedy, a joy is an ecstasy,

a friend is a lover, and failure is death.--Pearl S. Buck

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Hi, Liz,

My gosh! I feel as though I just met my long-separated twin! Just

kidding, of course, but we seem to " share " so much!

I wasn't diagnosed with ADD until I was 50 years of age. I am 56

now. All of the evidence was there, but no one believed that girls/women

could have ADD. By the time anything was attempted because of my

" differences " , it was Lithium and other " mood stabilizers " . The original

diagnosis was " Bi-Polar Disorder " . I have Cylert for the ADD. The weird

thing is that I get better relief of the pain from the stimulant meds than

anything else. What's up with that? Dunno...

My first concussion was at about age 11 when I was ice skating.

Talk about a headache! With all of the trouble I had in school already, the

post-concussion problems just make things worse. My older brother was great

with me. He was three years ahead in school and could " tutor " me. I just

barely passed my grade. Yikes!

There have been three concussions in adulthood. Two from auto

accidents. I am so short that the shoulder restraints catch me across the

throat and do nothing to hold me back in the seat -- only the lap belt does

any good. The most recent one was in March 2001 when I fell and slammed my

head at a friend's home. I thought the headache would never go away. The

pain in my neck and back was unbelievable!

An MRI of the brain was done in 1997 and the doctors noted " scar "

tissue at the back of the brain and in the front right side. The injury to

the right side of my head was not a concussion per se, but there was nerve

damage to the facial nerves controlling the area around the right eye and to

the nerves controlling the eye itself. Some relief was provided through

surgery to correct the Ptosis that was caused to my right eye lid. Cataract

surgery was done in 1997 so I am also the recipient of dual lens implants in

both eyes. My lifelong vision problems were pretty much fixed with that. I

wear " skinny " glasses now! I also have some generalized weakness in the

entire right side of my body that no one has been able to figure out. I

" lean " if I do not " force " myself to sit up straight. Very strange... The

MRI done after that fall in 2001 still showed the same problems with some

new " nominal " scarring. There was no evidence of a stroke, only injury.

There have been a number of injuries and surgeries to both knees and

things are at the point now where the orthopedic surgeon is muttering about

" replacement " . Ha! The pain and instability will have to get much worse

before I will let any more surgery be done. Ugh! I cannot imagine that

putting artificial parts into this body is going to be " without risk " . Then

there is the massive depression that follows the use of general anesthetics.

Nope! Not me! I understand that nothing is without some risk, but even my

PCP is not in favor any kind of surgery for me that can be avoided.

I spent more than 25 years being treated for depression when all

that was needed was to medicate the " low thyroid " problem and the ADD. The

only one of the antidepressants I take is Trazodone and that is only PRN for

sleep. I do sleep pretty well most of the time, but when I do not, things

get really ugly around here.

Day-to-day life is a series of mild up and down " waves " for lack of

a better term to use. My " mood " responds to my level of pain, so if I can

gain some control over the pain, things slide upward mood-wise. When the

pain gets ahead of the meds, then I slide down and there is some

" depression " , but the doctor does not want to medicate that too heavily. He

and I have the same goal in mind. Relieve the symptoms without having to

drug Dianne out of existence. I like who I am and the drugs change that. I

don't like who I become on the drugs. I do not like drugs that make me

sicker than what caused me to take them. I would rather live with the pain.

One thing that does seem to be true is that the climate/weather can

really affect me. Although the sun can trigger a Lupus flare, I am out in

the sun in the late evening. Real exercise causes major problems, but

walking around the desert in the evenings is great for me. I can be

outdoors anytime. It is the sun that causes the problems, so I " grow " in

the shade! LOL!

The whole thing becomes a " balancing act " , which was difficult to

accomplish, but was not impossible. I have become much better at balancing

things and more accepting when things change for good or bad. That is where

the challenge lies for me. I am not accepting of change in any natural way,

so I have to " work " at it. <grin>

Life isn't what I wanted it to be, but it isn't nearly so bad as it

could be.

Dianne

" By observing without judgment and measuring with compassion, life reveals

itself through the questions I ask myself. Everything I do is me figuring

myself out. " -- IHE/DRL

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[Guest guest]

Liz, I'm wondering if they have a money management program where you live.

In Portland, where my sister lives, they have a non-profit or social service

agency that receives checks such as SSI directly on the person's behalf and

pays their bills and doles out cash to the person. It's for people who have

difficulty managing their own money. I wonder if they have that where you

live. It seems like you don't need this stress of keeping track of all this

financial stuff.

Good luck. This doesn't compare to your situation, but when I used to get a

lot of sinus infections, I would lose my memory when I had a sinus

infection, I couldn't remember my own phone number, it was so embarrasing

and frustrating, so I can imagine how difficult this must be for you.

I hope your doctors can figure out what's going on soon.

God Bless,

Janet in SF

[Guest guest]

Liz sorry for your memory issues. That can't be fun and deal with other

health issues. I haven't had a whole lot of that, but wanted you to know I'll

say

some prayers for your complete healing. Good luck and God Bless. Kathy from

WI

[Guest guest]

In a message dated 8/4/2003 12:07:58 PM Pacific Standard Time,

jturner@... writes:

> This doesn't compare to your situation, but when I used to get a

> lot of sinus infections, I would lose my memory when I had a sinus

> infection, I couldn't remember my own phone number

Holy Smokes! Thank YOU!!! I thought I was just 'losing' it. That makes

sense! Last sinus infection I had... my son asked me something... I had to

stand there and think and think... finally...figured out the answer but Oh I

felt

dumb!

K

Adrienne's Mom

[Guest guest]

K (Adrienne's Mom),

I know it's so weird, sinus infections definitely do something to the brain.

The main symptom I have when I have a sinus infection is that I feel like

I've drunk a bottle of whiskey. I talk and look like it too. It's very

strange.

Janet in SF

[Guest guest]

Hi Janet,

I know the feeling. Funny thing though, I stopped having sinus trouble

after I stopped smoking 18 months ago. I didn't stop just out of the blue, the

triple by-pass surgery was a kick in the pants. Now, if I could only shake

this RS thing..... Harv ReA 24 years

[Guest guest]

At first I read this as " I would lose my MONEY when I had a sinus

infection!!! " LOL

DOH!!!!!!!!

>

> > This doesn't compare to your situation, but when I used to get a

> > lot of sinus infections, I would lose my memory when I had a sinus

>

Liz

~~~~~~

" The truly creative mind in any field is no more than this: A

human creature born (extraordinarily) sensitive. To him/her a touch is a

blow, a sound is a noise, a misfortune is a tragedy, a joy is an ecstasy,

a friend is a lover, and failure is death.--Pearl S. Buck

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Congratulations on kicking the smoking habit, Harv! I'm glad that you are

feeling better.

Kay Braddock

Speedway German Wirehaired Pointers

Paint Horses