Intracranial Hypertension is a painful disorder in which too much cerebrospinal fluid is exerting too much pressure on the brain. It is a life-altering neurological disorder that can cause vision loss, blindness and severe, disabling pain that often cannot be controlled. There is no cure.

The hardest part about IH for me is that I can't do everything I used to be able to do.  Now, a day at work exhausts me - physically and mentally. It is all I can do to handle one outside thing and I don't always handle it very well. I have had to give up most everything else. I just don't have the energy anymore.

My brain thinks differently, too. Between the pressure and the headaches and the head-drugs, I just think a few beats slower. It is frustrating and I struggle to keep it from being demoralizing.

I have a headache most every day. On a pain scale of 1 to 10, 0 being no pain and 10 being the end of my rope [sit perfectly still in a dark room, no noise, cool temperature, trying not to pull my hair out in between throwing up sessions].  Most days, I'm at a 2 - 4.  I can handle that. I can have short spikes up to 5 -6 most weeks that last several hours. Once a month or so, I'll have a day at about a 7. During a day I can have what I call lightning strikes that are 7 - 9's that last about 3 -4 seconds.

I've learned to just forge ahead and ignore them as best I can.

I work hard to deal with the mental and emotional issues of having a chronic illness. It is a daily struggle to handle the internal “self talk” about all I've lost to IH, to not smack the people who think because I don't complain I must be better (or cured...), to keep my dreams about my future alive, to keep hope for joy and love alive, and just to make sure I am working hard to be ME and use the energy I do have on things that bring me joy. I want to be sure I use my talents to make my life good and happy and useful.

I happen to have IH. I don’t want it to become who I AM.

I am very lucky that the drugs control it and I don't need brain surgery in the form of a shunt. It is scary waiting for that possible day.  It may not ever come. It may be next month. The brain is a smart bugger and for a lot of people it learns to adapt around the drugs.  I hope it learns how to STOP doing this.

It is hard for people to understand. I look fine. I seem fine. I still work. I’m not doubled over in pain. I must be doing better. A number of very sweet and well-meaning people don’t seem to understand why I’m not doing [beads and necklaces] anymore or why I’m not as completely organized as I used to be. People don’t understand why I won’t lead groups or organizations anymore. They are flabbergasted that I say "no" now. They seem to think I’m being lazy. It is hard to explain that my brain is just different now. I just don’t have the mental or physical stamina I used to have.

Even exercise makes me ill. Very ill.  Exercise intolerance is pretty common. 
It is hard sometimes to want to do anything because I am afraid it will make my head hurt or it will exhaust me. I have to watch that or I'll spend my life watching the world turn without me.

But the truth is I can’t go all day like I used to be able to. The heat of summer is dangerous for me. Getting overly tired is dangerous for me. It isn’t merely an inconvenience. My brain is put under tremendous physical pressure and that is dangerous. Brain damage can occur. The spinal fluid bathes the optic nerves so a spike in pressure could crush an optic nerve and render me blind. It is hard to live with that fear.

People understand cancer, but people don’t understand this. They can’t see this. If I haven’t mentioned it in a while, they think I’m cured. But, it may not ever go away. This is something I will probably live with for the rest of my life. My life is different now. But it is good. I still have so much. I am very lucky. And I am grateful.

http://the-brain-pain-blog.blogspot.com

(Thanks to Pamela on the-brain-pain-blog.  She wrote the above on her blog with a few adaptation of mine in brackets.  She says what I have wanted to say for so long but didn’t know how!)

Food for Thought About Teachers...

Hey there, this was taken off a facebook blog but I thought it was interesting! :)

Thoughts About Teachers Pay.

by Brittani Andrews on Saturday, February 19, 2011 at 12:07pm

Are you sick of high paid teachers? Teachers’ hefty salaries are driving up taxes, and they only work 9 or 10 months a year! It’s time we put things in perspective and pay them for what they do - baby sit! We can get that for less than minimum wage.

That’s right. Let’s give them $3.00 an hour and only the hours they worked; not any of that silly planning time, or any time they spend before or after school. That would be $19.50 a day (7:45 to 3:00 PM

with 45 min. off for lunch and plan — that equals 6 1/2 hours).

Each parent should pay $19.50 a day for these teachers to baby-sit their children.

Now how many do they teach in day…maybe 30? So that’s $19.50 x 30 = $585.00 a day. However, remember they only work 180 days a year!!! I am not going to pay them for any vacations.

LET’S SEE…. That’s $585 X 180= $105,300 per year. (Hold on! My calculator needs new batteries).

What about those special education teachers and the ones with Master’s degrees? Well, we could pay them minimum wage ($7.75), and just to be fair, round it off to $8.00 an hour. That would be $8 X 6 1/2 hours X 30 children X 180 days = $280,800 per year.

Wait a minute — there’s something wrong here! There sure is!

The average teacher’s salary (nation wide) is $50,000. $50,000/180 days = $277.77/per day/30 students=$9.25/6.5 hours = $1.42 per hour per student–a very inexpensive baby-sitter and they even EDUCATE your kids!)

WHAT A DEAL!!!!

some near to final kitchen pictures

Just to remind you, the first three pictures are the old kitchen - all vintage 1976, even the drop-in almond range!  We added the green tile about 10 years ago. The closet pantry in the back left corner is now gone as are all the soffits above the cabinets.

The wall to the left of the fridge is now gone.

The island is now gone.

Yes, this is the same room!

The countertops and backsplash are a white Corian with colored little spreckles in it.  They countertop people even made a Corian ledge under the window and Corian molding completely around the window.  This will be so easy to clean!

Here is a picture of the sink - a bright white Corian seamless sink.  I love it!  Of course with the Moen Faucet - and my new Mikasa French Countryside cup and saucer next to the sink.  Heck yeah I had to get a whole new set of dishes - dah!

Meet the JennAir gas stove and fancy hood.  What a dream.  The Corian backsplash goes all the way up to the bottom of the hood.

Now this is more into the dining area.  I had these red drawers made to put my husband's grandfather's Noritake China in and linens, etc.  And then the Hutch his grandfather also had can now sit on top of another Corian countertop to show off the dishes in a regal manor!

We had two of these bistro tables made with the same Corian as the kitchen countertops.  Then I bought Ox-blood chairs on castors to sit up to the tables. We love hanging here reading, chatting - whatever!

The window again all encased in Corian for devine cleaning ability!

So here is a total field of view looking from the entrance into the dining room from the front room.  I should have moved the cafe tables back in place but I forgot - they will be off to the right where the mess I thought I had hidden is showing.

My gorgeous fridge.  In the last fridge, we had to make a wood shelf to put into it to make it more usable.  This one is a dream.  You can see a small pantry to the left of the fridge and a flat screen TV above the fridge!

A few throw rugs, the lights hooked up that illuminate the underside of the cabinets and a few paintings hung and a whole heck of a lot more emptying boxes of who knows what and it will be back to normal only elegantly.

floor is nearly done!

You have to pass it on when you have met the best!

     Our painter was by far the most skilled, most polite, most thorough painter I have ever seen.  Now this is coming from a gal (me) who is married to an ex-professional painter who had his own painting company for 5 years (til the bottom dropped out in the early 80's economy).  I was the painter's helper on many occasions so we have both seen good painting.
      But, we're older now and we can afford to hire the work done, so we did.  Both my husband and I stood with our mouth gaping as we watched a real pro paint our entire upstairs.  The prep work was the most impressive.  He moved furniture, taped off and cleaned until I was embarrassed.  He said, "I tell people I'm really just a glorified cleaner!"   Then he painted PERFECTLY - no runs, no drips in a few hours.  I thought we were done but NO -- He sands his primer, re-cleans, sands the first coats, re-cleans and then put on the final paint coat.  Now our job wasn't just an easy one color situation.   We love white, flat paint ceilings (it hides any errors from the sheet rockers).  So he had to cut around the entire ceiling with the wall color and I thought my husband was going to cry at the perfection of his cut line - and the ceiling looks flawless: smooth as a babies bottom!
   So here is the shameless plug for a talented painter:  Cody of "Cottonwood Craftsman" out of Salt Lake City, Utah.  If you are interested in him, send a comment and I'll give you his phone number!

quick kitchen update:

Sheetrock!  It's all mudded and sanded and ready for paint to start tomorrow!  Doesn't the room look incredibly small without anything in it!  I sure hope it finishes off easily - this is getting old!

Small but Significant Progress Towards the French Bistro Kitchen

So...  we have all the electrics done.  A lot of wires had to be moved when we removed the soffits!  And of course plugs were moved and wires fished through walls and such.  That's all done!  The plumber has OK'd everything so all he has to do is re-hook up when the cabinets are placed in.
  The drywaller is coming tomorrow to start putting the room back together.  When he has re-sheetrocked and mudded, then we can paint.
   When painting is done then we can lay the floor tiles (my beautiful black and white checkerboard squares).

The cabinets will be done before Feb. 14th.  They are red oak (a lighter color) in the kitchen but the dining room will have one wall with large drawers in a red cherrywood color underneath a counter (a white Corian countertop like the kitchen) and then my beautiful Early Federal Hutch (with double S shaped glass in front - picture to the left) can sit on top of the Corian counter and ontop of the similarly stained drawers underneath.   This color will give the dining area a slightly different look.  Remember, the dining area will have the ox-blood red chairs with bistro tables. 

The other end of this room is a work room/library also with red oak cabinets. So the contrast of the redder cherry or mahogany color in between the lighter oak will break the room up nicely, yet tie them together.


Included pictures are a sneak peak of my JennAir range, and the hood (we had to hang it to get the hole made for the vent outside).  The hood came immediately back down for the dry-waller tomorrow!