Life Beyond Lupus

9:38:36 PM EDT

Well, it’s another Fourth of July here at the Cozy Cottage.

 

It’s 9:20 p.m. and I am sitting home with the fur babies while my guys are down at the beach watching everyone shoot off fire works.

 

Every time I look out the front window, I see more and more strangers marching down our road. The ones with the babies and wee little kids are heading back up away from the beach, and the families with the older kids are on their way down there as the sun finishes settling for the night.

 

Pretty soon the beer bikers, herds of teenagers and the scary who the h**l are those guys folks will be on their way traipsing past my front yard.

 

My Independence Day is being spent in the living room for now. I could use some independence from lupus, that’s for sure. I’ve been in bed rest mode today… just the fatigue, dizziness, and random brain fog that comes calling.

 

I wasn’t up to the two blocks walk down the road to the beach.  My boys are going to do sparklers with me when they get back.

 

I don’t even know why I am writing tonight.

 

I don’t have anything important to say.

 

I am happy to be right where I am in this moment. Tilly the Wonder Dog is sitting at my feet. Our kitties are also hanging close to me tonight. I’m watching the movie Independence Day for the umpteenth million time. Bill Pullman is just about ready to slip into his “Don Corleone” voice and poor Jeff Goldblum is going to be having his tantrums that some script writer thought was a really good idea. (It’s not…okay?)

 

Unfortunately, I missed Harvey Fierstein’s scenes. But, I’ll get to see what’s his face drive his plane straight up the alien’s spaceship…er…um… hole.

 

And, just one more thought here… how did those guys get their Mac computer compatible with the alien one?

 

Anyway…

 

I wish everyone a special holiday.

 

I really wish I could say this is a great year to celebrate America, but it’s not. Over 200 years ago, the founding fathers were fighting against imperialism…

 

And… well, now we have become what are ancestors loathed.

 

Probably a lot of people in the world wishing for independence from U.S.

 

Yes.

 

This is true.

 

My prayer is that our country will become known as the land of generosity, the land of open arms and open hearts.

 

We have a long way to go.

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12:45:59 PM EDT

I went in for my usual rheumy (rheumatologist ) appointment on Tuesday. 1

Good News: The Imuran (Azathioprine)  treatment is going to be cut to half its dosage. 2

Bad News: The dosage is being cut back because my WBC (white blood cell count) is too low. 3

Good News: Less nausea for me, and maybe my patchy hair will start to fill back in!

Bad News: Doctor Rheumy asked me outright how the CNS (central nervous system) lupus symptoms are going.4 (HE HAS NEVER BEEN THAT DIRECT ABOUT IT BEFORE.)

I think the new nurse gave him the heads up. I forgot to follow her to the examination room after weigh in. She wasn't too happy about walking all the way back to retrieve me.

 Oops.

(I think she snitched on me.)

Good News: I asked Doctor Rheumy for his opinion about whether I will EVER be able to return to the work force. I have to paraphrase here because I didn't quite catch all of what he said... but, it was something like... well we can see how things are going and maybe sometime in the future...

(I took that as a "Yes, you will get your old life back in the near future.")

Bad News: and then he went on to say... or maybe you won't return to work... and that will be okay too.

Good News: I am so confused that I don't even feel bothered about what I think I heard him say.

Bad News: He's talking about increasing the Lyrica dosage. 5

Good News: I lost the 5 pounds gained from the first run of Lyrica. (I can actually wear pants for part of the day)

Bad News: Now if I could only FIND my pants.

So, I went and had the several tubes of blood drawn, peed in the cup, and waltzed out of the medical center thinking to myself that maybe I am turning a corner.

And, now I must begin to think about that corner turning.

I think the biggest concern I hold is that when there finally is a cure for lupus, it is going to be too late for me.

My brain is going kerbonkers. My memory is unreliable (Please do not tell me that everyone gets forgetful with middle age... I do not have that kind of forgetfulness, it is much worse).

My speech is affected... I go through bouts of forgetting the names of things. We have more "thingies" about the house than I care to think about. Sometimes even the cats are "thingies" when I am having a really bad day. I point and stutter. My guys have gotten accustomed to it...

I haven't.

I just got through a rough spell of ten days of unremitting breakthrough migraine pain. I have migraine medication that is taken daily and then breakthrough pain medication. That didn't even work through this last bout.

There's the whole spastic leg thing and nerve pain.

And with Ms. Lupus playing Pacman on my brain, I get moody, horribly irritable, and moody.

If there is a cure for lupus out there... and I get to be in line to receive this...

Will all of that go away?

I don't think so.

So I have been praying a great deal.

I am wanting a miracle.

I have found it very difficult to just pray "Please, heal me." I can do that for other people, and gladly so. But, asking this for myself... am I being selfish?

Then I think how happy my guys would be to have me fully functioning. How easier their lives would be.

Yes, that is worth praying for a miracle.

And I know that when my healing turn comes, I would never go back to who I had been.

I was too busy, caught up in the act of being busy, busy, busy... as if that is something important.

Actually, with the past five years of long quiet solitudes while my guys are at work and school... I have had a lot of time for reflection.

And I really am embarrassed at the person I have been. Give me another five years and I will be embarrassed at the person I am right now.

Anyway, I am rambling off the path and picking daisies here.

Just being drifty, as usual.

Let's hope cutting back the Imuran provides positive results. Let's really hope it doesn't set me back by causing the lupus to flare up more.

And now I must be off to go find those pants!

__________________________________

 

 

1. What Is a Rheumatologist?

2. Azathioprine (also known as Imuran) is an immunosuppressant used for kidney transplant patients.  Read More --->

3. Leukopenia (Low WBC)

4. What is CNS Lupus?

5. Lyrica

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1:15:08 PM EDT

Found this floating around the internet.

Thought it was pretty funny.

ENJOY!

 

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4:54:37 PM EDT

Here is an absolutely outstanding recent news article about the effects of lupus on the brain:

Lupus: Up close and personal

 

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2:21:56 PM EDT

At the age of 19 I sat on the shores of that beautiful lake,

Throwing stones alone...

Thinking,  "What am I going to do with the rest of my life?"

And the answer was loud and clear in my mind's ear...

So real that I felt my guardian angel near

Confiding to me

as one old friend to another.

"Your life is one long journey

sometimes to be loved,

and sometimes to be the loving."

**********

Dear angel,

How many times have I failed?

How many times did I reject the love given?

How many times did I avoid giving the love that needed to be shared?

How many times may I be forgiven

Before I lose all, and no one cares?

******

She whispered to me in the dreams of the young,

and I lost her voice through all the wrong I have done.

To love and be loved was her message to me,

whispered like a lullabye on the shores of the sea.

And emptied now of all the worries I had laden down.

Free to fly,

 or swim,

in a sea of love,

to help others who may drown.

She told me,

"A tree is just a tree,

A life is just a life.

You are just  a woman,

A sister, mother, and 

some day you will be a wife."

*****

Now I say...

I will spend the rest of my life

Loving freely through tears and scorn,

loving freely even where no hope can be borne,

loving freely at death's door,

loving freely when people love me no more...

and when I pass this world through death,

I will be waiting to hear my angel's breath

sing that lullabye one last time to me

by the shores of an eternal sea,

"Did you receive love, was love freely given?"

I will whisper, " Yes dear angel."

and, hopefully, be greeted into heaven.

 

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9:41:01 PM EDT

Someone stop me... I am on a roll!

This time the portrait was inspired by this:

and this:

And here are the middle parts:

1 - Create a base:

2 - Take the eyes off of the side of the head and move them forward (also start adding skin tones):

3 - Start the nose base, cut off the horsey chin, add more skin tones, and create symmetry (using a reflective mirror effect from JASC Paint Shop Pro 9):

4 - Paint, Paint, and paint (the fun part):

5 - Hunt around on the internet for hair. Copy, cut & paste (Sorry, but I am not good at starting out an original hairdo):

Yes, my horsey got Reese Witherspoon red carpet hair.

6 - More painting (notice more eye detail), plumping up the face, using the reflective mirror again to get the symmetry back, and some taffy pulling with a distortion tool:

7 - Several hours later of painting, sculpting, and adding a few bells and whistles:

 

8 - One last runthough using Microsoft Picture It 2002... I added a glowing/diffusion effect to make her glow.

TaDa!

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4:38:21 PM EDT

ANTM Mercedes on Lupus Awareness

This young lady is the most requested topic in Life Beyond Lupus.

Here is a brief awareness clip with Mercedes from the LA Lupus Lady:

 

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2:54:22 PM EDT

Defective Nice robot animation, but can you spot the mistake.

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11:49:31 AM EDT

Another attempt to "try something different":

and after:

and MORE (after fooling around with Microsoft Picture It!)

 

I think I am going through an old lady doll collecting phase.

Have a great weekend everyone!

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11:56:29 AM EDT

 

This video clip is about :18 in length, but well worth your time:

From TED | Talks | Jill Bolte Taylor: My stroke of insight (video) :

Jill Bolte Taylor got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions -- motion, speech, self-awareness –- shut down one by one. An astonishing story.

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