Friday, October 30, 2009

Autumn Wind

The winds blows frightfully,
It swirls in confusion.
I am lost,
Some where between despair and ecstasy,
I am in both places at once and
I am confused.
Can I?
Will I?
Should I?
Strange questions to ask,
But the answers swirl around in the wind,
Lost for a time.
To be found again,
Someday.

Thursday, October 29, 2009

The Reset Button

In my sub conscious, I knew yesterday was important.
I did not know why.
That is because that is the day they a year before, they put the shunt to remove the excess cerebral spinal fluid that had accumulated in the back of my head at the site of the operation.
That day was the beginning when the reset button was hit and for November of 2008, I have no memory, only snippets of still pictures.
The Shunt was only suppose to remove the excess, but it did far more than that and for a month I was operating my thinking engine one quart low.
The close people around me were alarmed, but did not know what to say or do.
My speech was slurred and slow and all my movements were deliberate.
In one sense, I was operating at a "retarded" level of cognition and that is not to put anyone down who is slow, my brain simply was not there.
I could not cook.
i could not put the sheets back on my bed after I had washed them.
Lots of things just did not matter anymore.
It put me a path that put me back in the hospital in the beginning of December, where they figured out what was wrong and shut off the shunt.
I woke up from that operation with my brain operational again, immediately.
It forced my "heart" and feeling to operate my life and that was not all bad.
I think that is what activated my muse.
What put me back in the hospital was a walk, about a mile down the road. alone, to buy a gift card for someone special's birthday. The action was all heart, my mind was not involved.
There was no mind to be involved.
On the way back, I passed out on the sidewalk in front of a gas station.
There are strange stills of memory in that, a woman screaming, the Fire truck with flashing lights, a kind and gentle EMS man lifting me onto a stretcher.
The hospital stay was cloudy and dark People visiting me, someone running out of the room crying, a gentle nurse helping me, signing a paper for an operation and then waking up with everything clear.
I did not say, but they checked my cognition, gave me an IQ test and decided if I had lost anything, it really did not matter, the IQ score was 160, for whatever that matters.

Today was a good day of remembering that "reset" and while my camera skills are poor at best. I give you a snap shot of my latest creation.


CT covered bridge.

Wednesday, October 28, 2009

It ALWAYS passes

Today was a strange day, I was down a bit, but there was a reallity, my muse was struggling to get out again and paint.
That will be shown when I get the picture out of the camera.
It was also a day of reflection because I and not thought much of the struggles I was gone through this past year and there are many of them and I am still dealing with some of them.
I remember the first night in the CCU of the hospital not really understanding all the swimming and confusion, the blackness and the noises.
Then trying to learn to walk again and to swallow, such difficulty, not even water would go down right.
I still will choke on water, but the improvement is so different.
I was sitting on the porch yesterday and doing something that coems naturally to me, but I think no one else. I was balancing chemical equations for impurities that use oxygen in the Long Island Sound. I am crazy, I thought to my self and then today I painted. It is different than I used to do, but there is a different kind of complexity to the work and I know it is me also.
I started the chicken for the enchiladas I will serve in a couple of weeks, they went into the freezer and that is part of me also.
Such a complex creature and yet last year...
I have come a long way.

Then there are days like this...

Neither fish nor fowl,
not animal or mineral or vegetable.
Hang over an Abyss of limbo,
Darkness crowds my mind.
The mouth tries to speak,
but the mid gives it no words.
There is silence.
Chaos and confusion reign.
The struggles, they are not over,
the dreams of sweet peace are still fleeting.
There are days like this.
Then they pass.

Tuesday, October 27, 2009

More tantalizing tidbits!

These are the vegetarian recipes!

Baked Zucchini


8” zucchinis sliced in half
Olive oil
Tomato sauce (puree, 1 large can)
Oregano
Minced garlic
Coarse chopped parsley
Shredded Mozzarella
Shredded Italian cheese (Parmesan, Romano, etc.)
Red or rose wine
Salt

· Coat a saucepan with olive oil and heat garlic.
· Before garlic browns, add tomato sauce and salt to taste, mix well
· Add oregano and wine and let cook on low heat for at least 1 hour.
· Coat a baking pan with olive oil.
· Cut criss-cross lines in the zucchini and Place in pan cut side up.
· Top with sauce, mozzarella cheese and then Parmesan cheese.
· Bake at 275 to 300 for 1 hour (cheese should be melted, may be tan, but not dark brown)
· Top with parsley and cut in half.


Burgundy wine mushrooms

Mushrooms
Butter
Scallions
Black pepper
Burgundy wine
Chopped parsley

· Melt butter in pan
· Add mushroom and just brown
· Add scallions, parsley and black pepper
· Add wine
· Bring to a boil and thicken with either a rue (flour and butter or corn starch)
· Reduce heat and serve.

Enchiladas

Whole wheat tortillas
Red chili tomato sauce
Monterrey Jack Cheese
whole green pepper (optional)
Course chopped cilantro
Cumin
Chili powder
Corn oil
· Add long rectangle of cheese and cilantro to tortillas and roll. (add the pepper if you want it here)
· Put corn oil and chili powder and cumin into a baking pan and mix.
· Turn the tortillas in the oil.
· Add red chili tomato sauce onto rolled tortillas and top with shredded cheese.
· bake @ 350 for 30 minutes.


Sesame rice

Jasmine rice
Sesame oil
Sesame seeds
Cumin seed
White wine
Chopped chives

· Heat oil and then add sesame and cumin seeds and heat for one minute.
· Add rice and coat with oil.
· Add wine and bring to a boil.
· add chicken stock and water, bring to a boil, reduce heat and cover.
· I serve with chopped chives.

Monday, October 26, 2009

Answers

My Eyes hurt today.
Of course I was working yesterday and If I figure right, I will continue to do so until January,. Sigh!
I go to a conference tomorrow and Wednesday I take off (and I will present something at the conference).
I will give a start to the answers to my puzzle, slowly of course!

Chili
Ground buffalo meat (2 #)
Ground chicken meat (1 #)
Lean ground beef (1#)
Chopped onions (2)
Butter
Diced hot peppers to taste
Diced red bell pepper
Diced tomatoes (canned is okay) about 1 16 oz can.
Chili powder (to taste)
Cumin (to taste)
1 beer (Dos Equis is preferred)
Special addition – one orange cut into pieces (include peel)
Burgundy wine
Course chopped cilantro
· Browning the meat and onions first is best.
· Place into crock-pot and turn on low.
· Add all spices and peppers, except Course chopped cilantro.
· When every thing is hot, add diced tomatoes.
· After 5 hours of cooking add 1 beer
· After 1 more hour add orange and wine
· Add Course chopped cilantro cook one more hour
· Serve with Course chopped cilantro on top.
This can be frozen until the day to be used.

Greek meatballs!
1 pound ground lamb
1 pound lean ground beef
2 course chopped onions
1/2 cup bread crumbs
1 egg
1/2 cup chopped parsley
1/2 cup dry mint leaves
diced garlic (1 tablespoon)
olive oil
oregano
lemon juice
Mixed it all very well
add olive oil to just cover baking pan
make small (no more than 1 & 1/2 inch) rolled balls.
Sprinkle with oregano and lemon juice
Place then on the pan and bake at 350 until just brown.
sprinkle a small amount of salt.
This can be frozen until the day to be used.

Sunday, October 25, 2009

We interupt the suspense...

I will give all of the rest of you a chance to guess, so far Barry has got it right, a lot of food. All the other guesses are close, but no cigar. I will publish the recipes in a day or two.
There is a possibility of 21 people coming at various times through the afternoon of the 8th.
Now for the interruption, as many can guess, I do love to celebrate and any excuse is good.
I have fun on Halloween, but for many years the holiday of a celebration of all soul has been taken to a dark place. I personally blame the Puritans, with all their emphasis on evil and witches and the fundamentalist, who basically went the same way. So the celebration in the beautiful season of Autumn of everyone who has lived has been turned into something dark and sinister, spooky and scary, full of evil and horror.
That is not the way I celebrate.
I have pumpkins (the harvest)


and scarecrows (again the autumn harvest)


and candles (for all the souls).
The worst spooky thing I have is spiders, and the ones I see, come out about this time anyway,
so they are an Autumn thing.



And the web I weave!


The colors are Orange, which is Autumn and black (so it gets dark earlier also)!

There will be smiles and laughter and all the kids in the neighborhood know I will have candy (think cavities and hyperactivity parents)!

Saturday, October 24, 2009

A puzzle

Well the regular work week is over, tomorrow, not today, I get to go in for more samples (that will be Sunday for anyone reading this).
There are times I am still hot headed with people (workers) who seem to show no interest, but that6 is not really my problem is it.
In the mean time my head is filled with many other things and for all who wonder, I have been preparing things.
Any and all of you would be more than welcome, if you were in Stamford on the 8th of November, which is also a Sunday.
I prepared several items and will give you the ingredients, in no particular order. If you see something twice, it is because it is used in several items..
Ground Buffalo meat,
ground chicken,
ground beef (90-10),
ground lamb,
Chicken breasts, sliced thin,
tomato sauce,
shredded Monterrey jack cheese (both with and without peppers),
diced tomatoes,
coarsely chopped cilantro,
finely ground (food processed cilantro),
coarsely chopped white onion,
Butter,
olive oil,
tequila,
jalapeno peppers, diced,
jalapeno peppers,(food processed),
Poblano peppers, whole,
red sweet peppers, diced,
chili powder,
cumin,
Small whole wheat tortillas,
lemon juice,
sea salt (added very carefully!),
beer,
eggs,
dried bread crumbs.
I think you get the gist of it, so tell me some of the things I am making!
So besides all of you, I am inviting three of my neighbors and their families, 5 people from work (one will not make it, sadly), One long time friend and her family and any of "my community" that are in town.
I am being vague, but you can guess, I have posted on all!

I am also having a great deal of fun with this, so keep those cards and letters coming!

Wednesday, October 21, 2009

planng a celebration

I am planning something.
It has been running around in the back of my mind for some time.
I began to prepare a menu and have just started to gather the things i need.
It means that my days off will be busy until November 9, because on November 8, I am throwing a party.
I think i have something to celebrate, it will be my birthday on the 9th, but the 8th is a Sunday.
I think I may be just a little bit crazy.
No, make that a lot crazy.
But there is much to celebrate!
No more painting till this is out of my system!
I know that I must balance rest with this, but I want to have fun.
Last year, i was too much in the thick of it to even think this way.
I am happy I can even think to do this.

Monday, October 19, 2009

A composite.

Yesterday was rainy...
and COLD ...
and WINDY...
It was a day I did not work
so I stayed indoors and created a mixture of the few trees I have seen in the fall.
I also roasted a chicken and made Escarole bean soup. It was a good day.

I do love the colors of Fall!

Sunday, October 18, 2009

Mutifaceted post

So many things going on and it is my day off!
So we will do each item as if it were a single entry

Disaster!

In the kitchen, sadly!
I was making my version of potato leek soup.
Everything was looking good.
All the ingredients except sour cream and salt were added.
I start to add a bit of sea salt....
and the top comes off pouring the entire contents of the container into what was, wonderful soup.
The bad thing about sea salt is that it does not dissolve immediately, so each attempt at correction only released more salt into the soup.
What a waste.
No more leeks in the house so I will need to wait till another day.



Fall cometh, slowly...

This is one of my favorite Autumn trees. Its common name is Autumn Scarlet and I have been taking pictures daily as it slowly changes. It is a tree that does not grow much over 30 feet and takes a long time to get there. It has very small, pale yellow flowers in the spring and turns brilliant red before losing its leaves in the fall. It has not yet turn...
This is a few of the pictures:


Other trees have been much quicker.



Okay, we have had winter, lets go back to Spring!

The weather has been wet, cold and windy, reminding very much of winter in Houston.
It has lasted about what I would experience there, so it is time to end the Winter season and have Spring!
Right?
No, you say?
We haven't had Christmas yet?
And Thanksgiving?
Not even Halloween?????
Oh, I think I am going to be depressed!

Saturday, October 17, 2009

The World in a swirl

As if the wind is blowing,
in a whirlwind fashion.
My mind swirls with thoughts and images.
Headlines in the news,
contradict each other,
one after another.
My vision seems tame compared
to the madness we witness on a daily basis.
Swirling with two images,
at least mine are identical and clear.
Not at all like the craziness that6 rages
in this world today.
My thoughts still race,
jumping from one item to the next.
E
_v
__e
___r
____y
_____o
______n
_______e,
_______C
______h
_____a
____l
___l
__e
_n
g
_e
__s
E
_v
__e
___r
____y
_____t
______h
_______i
________n
_________g
__________E
_________v
________e
_______r
______y
_____d
____a
___y.
What madness is this?

The Autumn wins blow hard.

Friday, October 16, 2009

Laughter

After a bad Monday (it was a day off, but my mind and eyesight were not being good to me), the rest of the week has been good.
I helped out my own personal charge (a person in a difficult place that has been brought into my life for whatever), found in roads into helping people understand the insanity that is the water testing we are doing and generally laughed a lot.
Laughter always helps and although I had to rest for a significant time after work (1 hour or more), I was seeing and walking better by Friday than I have in a while.
i only have to work on Saturday and will take off Wednesday next week.
So I would say it is a good week.
The weather is down right ugly, but besides it being cold, it is not effecting me or my spirits.
Good days/bad days, can I laugh through them?
That would be a really good thing.

Thursday, October 15, 2009

A good day with lots to do.


I know my posts as of late have combined my struggles to recover with my work, but that is because work is taking so much of my time and has affected the recovery process.
However, work's intrusion into my mental process is unacceptable and I promise to eliminate that. I will solve what I can at work and leave it behind when I leave.
The rain out side is cold and chilling to the bone, but for some reason, I do not find it unpleasant.
I am watching the last roses of the year come as if to say, "You can not stop beauty.The slowly changing leaves provide color for my spirit and so I laugh even more.
At work someone called and asked what was going on besides the well issues at Scofield and I started laughing. He said it was good to hear someone laugh.
Today, I cannot barbecue because of the weather, but will do a honey glazed chicken instead in the oven, with the last few minutes on "Broil" to give it some crisp.
I am going to have to intervene with my Mom, her attitude is bad at times and of course that makes her talk of death.
The thing I know is that attitude can kill you and if you wish your self to death, it will happen. She has decide she is too old and frail to deal with things and wants to go into a home.
Some of that is her younger sister talking.
You see when she has good days, she is out shopping (and drives to the places) and eating out and enjoying life. The difference is that when she has bad days, she remembers nothing good, even if it was just the day before.
The doctors are not concerned with her health, they say she is health and strong, just having various pains for very common reasons, arthritis, scoliosis, a hiatal hernia, all of which combine to make one very unconfortable, but are not deadly. It is the mind that is deadly.
So one more thing on my plate, now if I could get released to do significant travel (still doctors restrictions for good reason) I might help her out, but for now it is a phone mission.

Wednesday, October 14, 2009

First Frost of the season!

I am not a fan of cold and having grown up in Houston, Texas, where the cold of winter is limited to about 2 weeks, I am still not used to it.
However, the first frost means a great deal.
I get to begin to clear the garden of all squash, cucumber and tomato plants.
I have many green tomatoes for relish or fried green tomatoes!
The pepper plants are okay till a good freeze and so I continue to get peppers (mostly hot ones).
The trees where I am are beginning to changer, slowly, but now it will be quicker.
Yesterday was a downer, it meant more work to do.
The lighthouse meant that my resolve is unwavering and without question, despite the obstacles.
Fore Jeannette especially, but all others who wonder - I do not pray casually, nor sometimes, not weekly at a church, nor even daily.
In my life and what it has become, I am in constant prayer, there is no wavering.
I am also with out wavering and fro no apparent reason, always thankful despite all things,
Despite all of this there are times I become overwhelmed, unhappy with the efforts I must go through or even the direction i am on, this is life.
People are not callous, but sometimes they seem without comprehension or reason or especially empathy at my job. That is not my path, but I have some helpers, even at work and my job is to be understanding, reasonable and empathy.
My boss asks me constantly, not to be so certain in my answers, but I am, yet I know i understand the fear that people have and work with it on the phone and when citizens come in.
It is far more than the curt answers of doing limited testing because.
I have never worked that way and I see patterns in the subtlety of the "extra" work that I do that they see only after I show them.
The last post, "for the Love of God" of course comes directly from Edgar Allan Poe.
It is sometimes how I feel, being walled in alive unable to do much because of my incapacitates, but a feeling is not always the truth now is it?.

Tuesday, October 13, 2009

For the love of God, what else?

I have had several titles or this post over the day, most have expressed the same sentiment, bewilderment.
Apparently no one (save for a very few people) in my work place can understand what I am going through.
My boss wants to blame it on the over time, my coworker on my age (54) and other appear to remain clueless.
The bottom line is the answer to everything is. "we just won't do things".
The problems in the Scofield area expanded today, and I am sure they are not dump related, but more homes show chlordane. Of course an awful lot of these homes have there wells very close to the homes where insecticide was sprayed (is 7 feet close enough?) and the distance from the actual dump is very significant (getting close to a mile). Most of the homes were built long before these chemicals were banned and again, an old farm looms in the picture.
It is sad, but it is also creating a lot of work. How can they think to do less, it makes no sense to me. The city should step up and find ways to hook these people up to water, but this will be more difficult.
Anyway those are my worries...
and these were my thoughts this morning before we received the information.

The wind was quiet, the sea was still
just hours before the fury struck.
The waves crashed and the winds howled.
The lighthouse stood still and did not shake,
for all the might of the ocean and the storm did not move it.
And its light shone out.
The wind will quiet again.
The waves will cease their angry roar and
the lighthouse will still be standing.

You wonder why I like lighthouses?

Monday, October 12, 2009

A day to recover, a day to prepare.

Today is my second day off in this long weekend, I worked yesterday.
I started quietly, stilling my heart from the mad rush it has been in.
Dwelling on things that are beautiful, finding that quiet place in my soul.
The storms will come tomorrow,
but today I am looking at being, not doing.
This is nice, this is health and healing.
There will be things to do, but today, I shall not be overcome by them.
I want so badly to paint a fall scene that flits in and out of my mind,
but I can not yet capture it, it is still too fleeting.
There will be good to do today and maybe good to be done for me today as well.
It is crisp outside, but warm inside and that does not hurt.
Today, I shall not be hasty.

Friday, October 9, 2009

TGIF

I am glad it is Friday.
\i only have to work Sunday this weekend and have both Saturday and Monday off.
The days were very busy with many phone calls and tests. I will not have the phone calls on Sunday.
It is wet and rainy out and I will rest today and tomorrow. this is a good thing because the 2 days that I had off in the middle of the week are gone and I am tired.
A quick new post in my Environmental blog describing some of the issues.
I am tired, I repeat and will not cook tonight, i am happy how the situations have been resolved.

Thursday, October 8, 2009

Learning

There was a lot to learn in the city from the doctor, some came because i mentioned that the show that I like (Bones) had the male main character have the same sort of tumor I had.
It turns out the doctor like this show also.
The first thing I learned - the 6 weeks recovery mentioned in the show is a neurologist dream and never happens in reality. All the other aspects, especially the prolonged bizarre symptoms the the brain exhibits last a long time. I can certainly attest to that. Strange forgetfulness, mixing up of words in sentences, an increase emotional input into my thinking. The emotional thing I actually like, it brings out the muse better. The rest of the strange things I could do without, but longer than a year is normal.
I also have to listen closely, the doctor and my friends keep saying not to just drop out of work, for my own mental health.
The strange thing is that for many years was that my identity was as a "Chemist", I do not feel that anymore.
I work as a chemist and many other things besides, but i really want out and it is not the extra work that is causing that, but I am tired of it.
I am not tired of the results because I will bend over backwards to help people and there are a lot of them who need compassion in the current situation and I do not see that coming from many people working on the project.
That will be some thing consistent for me, but let me see where this leads me.
Monday I begin a conversation with my boss and I will see where it leads.

Wednesday, October 7, 2009

Short and sweet

The doctor yesterday totally agreed that work is stalling my recovery. She will start something and i will welcome it.

Tuesday, October 6, 2009

It only took a day

Inside the clutter was overwhelming,
Little unmeaning traps set for me to trip.
One fads out, play violent video games that i must escape.
Things to do, so much to do.
A clean uncluttered house is not mine to have,
but...
the plants have come inside to give even the cluttered house a warm feeling.
There are marvelous smells to excite the senses.
There is comfort also, for those who can, care.
I step outside, the fresh, cool wind blows,
wiping my frustrations and worries.
Blowing them away.
The air is crisp, but not frosty.
The sky is clean and blue.
I am Not at work today.
It only took a day...


::::::::::::::::::::::::::::::::::::

At the job yesterday, more results came in filling in the pieces of the puzzle have have been striving with.
They fit, I can see a light at the end of the tunnel.
My poor boss is also overwhelmed and argued with me about my concerns about my pay.
He found the problem, it was his. they will fix it now.

At home, I wanted to grill a salmon.
I love grilled Salmon.
There is a smoky wood I use, but it was too cool for grilling, I went inside.
I became creative.
Nothing is precisely measured and there are still herbs in the garden.
Fresh dill, finely chopped, mixed with yogurt and lemon and salt coated the salmon.
Jasmine rice with chopped basil and white wine.
Broccoli florets with olive oil and a bit of salt.
More basil to pick, i made an emulsion of basil and olive oil and salt and lemon.
The salmon could have cooked hotter and faster to crisp the skin, but it was wonderful.
The florets of broccoli, arranged like one large bunch.
The emulsion was a bit tart, so I add the sugar i could find, but I would have preferred brown sugar. that went on the plate along one side.
The rice next to the broccoli.
The yogurt crusted salmon just touching the basil emulsion.
This time I got raves.
I thought i might try to plate a bit, it worked.
I am always learning.
It was nice to look forward to 2 days off.

Sunday, October 4, 2009

A failed experiment

Just finished working 4 hours today, yesterday I worked four hours, tomorrow I work again, but Tuesday and Wednesday...I am off.
It was not so bad today, but I asked John to cook tonight, I have be way too tired. The work gives my eye a lot of strain. I do not know how it did not do what it has been doing, but it was not bad.
I know i was a bit aggravated over a piece in our local newspaper on this Scofieldtown thing.
Seems residents think that the trace amounts of chloroform and other trichlorocarbon speices are going to kill them.
Funny, those are by products of chlorine disinfection and the water company water has much more than the trace amounts found in the wells.
The proable source of the chlorinated compounds? Using bleach in the laundy and for cleaning. Anyway...

The day is beautiful, crisp and clear after all that rain yesterday and not cold, just cool.
I really did not want to go into work, but it is finished.

Oh, the experiment that failed?
That was at home.
I wanted to extract the color and menthol out of my mint and had some vodka downstairs (nasty stuff, I do not know where it came from, but I do not drink it) and so I used it. It seemed to work, the chlorophyll was coming out, the mint flavor came out. I wanted to eliminate the alcohol...
Oops, that meant I eliminated the menthol also, the main flavor i wanted.
What did I get?
Green colored, chlorophyll (think grass) tasting water.
Okay, back to the lab for some intelligence next time and maybe a new brain.
Better yet, maybe a bit of rest would stop some of this. So I will try again Wednesday.

Saturday, October 3, 2009

It was a Dark and Stormy...

Actually it was this afternoon the Thunderstorm hit, beautiful in its violence and ferocity. Lots of rain also. I was in the lab working when it hit, so I had a great view (the lab is on the 8th floor), but I had a lot of work an could only view it for a bit.
The rest of the day I as spinning.
That is what happens many times when i turn around, even slowly.
That is also what i feel like my life is like as of late.
Working weekends assists that feeling, I think this is the last weekend for both days.
I will be taking 2 days during the week. One to visit the optometrist/head trauma specialist in New York.
The other to have off.
I can not even do much during those days off, just veg.
The work on the weekend has been intense, up to twenty samples to process and check and prepare to send to the state. I do 6 tests on each before they are sent off on Monday.
I seemed to be designated as the "Authority" on well water and the various tests by higher ups. That gets me a lot more phone calls during the week.
The other person in the lab really does not want to do anything with it, she is our clinical person and I do not blame her, some of the people need a soft and understanding touch, which she does not have.
Walking home has been a bit tough because I am so tired, but I need at least that much exercise.
So I am spinning, not out of control, but spinning never the less.
For what ever reason, it helps me to know when whatever I am doing is helping others.
that is why I go out of my way to call attention to others who are regulars (or not) on this blog who are dealing with a great or many great issues. I know emotional support is really important, I do not think i would be here if i did not have the support of so many.
And so my mind wanders, almost aimlessly, but i think there still is purpose.

Friday, October 2, 2009

juvenile myositis - reach for a cure


Kevin of Always Home and Uncool has asked me to post this as part of his effort to raise awareness in the blogosphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago. The day also happens to be his wife's birthday.

*

Our pediatrician admitted it early on.

The rash on our 2-year-old daughter's cheeks, joints and legs was something he'd never seen before.

The next doctor wouldn't admit to not knowing.

He rattled off the names of several skins conditions -- none of them seemingly worth his time or bedside manner -- then quickly prescribed antibiotics and showed us the door.

The third doctor admitted she didn't know much.

The biopsy of the chunk of skin she had removed from our daughter's knee showed signs of an "allergic reaction" even though we had ruled out every allergy source -- obvious and otherwise -- that we could.

The fourth doctor had barely closed the door behind her when, looking at the limp blonde cherub in my lap, she admitted she had seen this before. At least one too many times before.

She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:

The rash across her face and temples resembling the silhouette of a butterfly.

The purple-brown spots and smears, called heliotrope, on her eyelids.

The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.

The onset of crippling muscle weakness in her legs and upper body.

She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day.

This was her gift -- a diagnosis for her little girl.

That was seven years ago -- Oct. 2, 2002 -- the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively.

Our daughter's first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn't tip over, as medicine or nourishment dripped from a bag into her body.

Our daughter, Thing 1, Megan, now age 9, remembers little of that today when she dances or sings or plays soccer. All that remain with her are scars, six to be exact, and the array of pills she takes twice a day to help keep the disease at bay.

What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don't know.

I do know that the fourth doctor, the one who brought in others to see our daughter's condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.

That, too, is my purpose today.

It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.

To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation at www.curejm.org.

To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.

Thursday, October 1, 2009

I'm not "happy"

2 men are in an auto accident. One gets out and casually inspects the damage, the other comes out red in the face and really upset, but he is particularly short.
"I'm not happy!" He says
The other replies, "So which of the other 7 dwarfs are you?"

That is how the fight started...

I thought of this today as thing after thing just did not happen for me at work.
My 2 main supports sensed this and both came to visit for a bit, which was refreshing, but still the problems persist.
It seems I am the expert the city has on the Scofieldtown mess and so as people barrage them with questions, many are differed to me. And those making decisions are asking my input.
Now if they could only get my salary right...
Yes you heard me, I have been working 4 or 5 complete weekends and they got my hours correct on one of them. One they overpaid me and that had to get corrected the next weekend, the others they are putting in more and more furlough time (which is unpaid time) and so I get less and less in the check.
Of course my eyes are really bothering me and that is not helping my attitude.
I come home and really can not rest because I am agitated, so I do the next best thing, cook.
Tonight - Tacos and enchiladas and saffron rice - true comfort food!
While I buy the tortillas, everything else is from scratch, so it does taste good.

Of course my little plight seems to pale into insignificance compared to my blog friends from the Philippines. Please visit any of the following blogs
cherie of this side of town
a small group of friends in the Salttype society
I think if you visit these 2, you will be drawn into the rest of the collection of an amazing group of people who have just suffered (and maybe suffering again) astounding loss.