Life Beyond Lupus

Forty-eight hours later and I have deleted NINE journals.

Hubby bought me a 50 pack of CDs.

I am holed up, curtains drawn, Supertramp LP blasting (yes...kiddies, a real live LP), high octane coffee in the extra tall cup, wrapped up in my winter velour house robe, and re-living the moments that circled around each entry.

Ugh.

Almost feels as frenetic as relocating to a new city.

When I am done... please, Lord, let me be done before Octover ends...

I'll post the new links and set up a subscriber listing so anyone interested can stay up to date.

Ms. Lupus has been drudging along for the archiving ride...

as if I have a choice.

She is miserable company. Chest cold, anemia, and pain seem to be the flavors of this week.

HA!

I spit in your general direction Ms. Lupus. (Mainly because if I spit directly at her... I would have to goober all over myself).

Gosh, I remember when I just could not deal at all with this lupus junk.

Turned into an absolute noodle, I did.

I remember mentioning a few times (okay more than a few) that I am definitely not the poster child for facing a health crisis with stoicism.

Nope.

But, this AOL Journal certainly saved my sanity.

And more than that...

all the people over the past five years that have bopped by and left comments, and ESPECIALLY, the friendships made here.

I really hope my fellow lupus J-Landers are saving their stuff!

Anyway... Supertramp stopped playing.

For the younger readers... that means I have to get up out of my chair, walk over to the record player and manually FLIP the record over to the B side.

Sigh.

Now doesn't that make some of us feel old?

Loretta

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AOL has announced that it will be removing AOL JOURNALS effective October 31, 2008.

Boy Howdy.

I am frenetically trying to back-up EVERYTHING!

Most people don't realize that I maintain(ed) TEN AOL Journals.

Yes...

10

I have cubby holed away a few private ones for the rough drafts of my book, and for rough drafts that I use prior to publishing a blog entry.

My quiet world has been rocked upside-down by this. I don't know if I have enough stamina to get the back-up copies done. Since June 2008 I have really taken a backslide. My Imuran dose had to be cut in half because my WBC got way too low. The fatigue came crashing back in with Mabel the Migraine monster tap dancing regularly on my noggin again. So I require a ton of rest.

Phooey.

I lost so much after TWO computer crashes and I didn't have the material on discs.

I atake what limited energy I have to write NEW things... not archiving my own material.

Anyway...

That's just a rant.

Everyone in J-Land is in the same boat.

Fellow J-Landers... if you haven't done so already... let me know where you are relocating to. Just e-mail me your link.

If anyone wants to help with the back logging here at Life Beyond Lupus, send me an e-mail and I can let you know what can be done.

More later!

 Loretta

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Hazelden -- Bill W and Dr Bob DVD

AND… Here’s a list of more books about doctors (from a terrific med student):

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I have entered a new terrain; the world of audio books.

Our public library system now has OverDrive--Library Services which allows one to download library audio books from the comfort of the home computer.

I have gotten totally hooked.

Though, I have discovered that having fiction read aloud doesn’t work well for me. I don’t want to hear someone else interpret the characters’ voices or their pacing. I don’t want be distracted by the narrator’s vocal idiosyncrasies.

But, when I get to non-fiction works…WOW!

Put the headphones on and let those babies go!

 I have been gulping down biographies, political science, business books, and on a lark I downloaded an inspirational piece from a name I am familiar with, Iyanla Vanzant, although I really couldn’t tell anyone why that name would be familiar.

The whole UNABRIDGED audio book plays through in 90 minutes. Much of this time is spent listening to the narrator (who happens to be the author) b-r-e-a-t-h-i-n-g… very, very, very…s—l—o—w—l—y.

I realized that this book was not meant for me. While listening to this woman’s pleasant voice, I felt the experience to be too intimate. Her resonant voice sliding directly into my brain via my heavy duty headphones was… um, well… embarrassingly overwhelming.

I was looking for inspiration and I got meditation. Although her topic is quite a good idea… live life with an attitude of gratitude… reciting my gratitude for my strong healthy hips just didn’t float for me. The author also spoke of attracting the positive to one’s self.

 I lurch at anything that smacks of the latest wave of “laws of attraction” in which people attract gobs of wealth to themselves. I found my mind drifting during the listening wondering if this was another one of those “you get what you deserve” mantra.

That whole wishing for stuff spirituality is older than old. I remember fondly in the 1980’s when my friend, Ellen, entered into a yoga group. I think she was seeking enlightenment. After a few of these yoga classes Ellen informed me over a glass of wine that the group was about “meditating for toasters” and other snappy household items. I laughed, she shrugged, and she avoided yoga classes for over a decade after that experience.

I sure hope that is not what Iyanla Vanzant ‘s work is about.

Unfortunately, this morning while preparing this review, I found out that the author appears on Oprah’s television show frequently.

 Uh-oh.

May I mention that I have acquired an Oprah aversion? I fear that the mighty O is getting an empress complex.

 So who may benefit from this audio cd?

I can think of several people. If you are feeling down about your body image, this work is for you. If you need help with anxiety, this work is for you. If you feel overwhelmed by life, overloaded by a cascade of negative experiences to the point where you can not see one shimmer of light… yes, this would be a good one for you to listen to.

As for me and my unenlightened happy to be middle class messy big hipped self?

Thanks Ms. Vazant for the reminder to be grateful for what I already have.

Amen to that!

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I just found this terrific new web site this morning.

Please consider visiting and then posting your feedback in the comments section:

Visit Wish Upon a Hero

Thanks!

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I received this one from my sisters.

If anyone knows the origin, please leave a comment so I may credit the author.

     $20.00


            Sometimes we just need to be
            reminded!


            A well-known speaker
            started off his seminar by:

            holding up a $20.00
            bill. In the room of 200, he asked,
            'Who would like this
            $20 bill?'

            Hands started going up.


            He said, 'I am going to give this
            $20 to one of you

            but first, let me
            do this.
            He
            proceeded to crumple up the $20 dollar bill.


            He then asked, 'Who
            still wants it?'

            Still the hands
            were up in the air.

            Well, he
            replied, 'What if I do this?'

            And he
            dropped it on the ground

            and started
            to grind it into the floor with his shoe.

            He picked it up, now crumpled and dirty.


            'Now, who still wants it?'


            Still the hands went into the air.


            My friends, we have all learned a
            very valuable lesson.

            No matter what
            I did to the money, you still wanted it

            because it did not decrease in value.


            It was still worth $20.


            Many times in our lives,


            we are dropped, crumpled, and ground
            into the dirt

            by the decisions we
            make and

            the circumstances that come
            our way.

            We feel as though we are
            worthless.

            But no matter what has
            happened or

            what will happen, you
            will never lose your value.

            Dirty or
            clean, crumpled or finely creased,

            you are still
            priceless to those who DO LOVE you.

            The worth of our
            lives comes not in what we do or who we know,


            but by WHO WE ARE and
            WHOSE WE ARE.


            You are
            special
            -
            Don't EVER forget it.'

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The first blog entry I ever wrote was about our family’s two precious kittens. I felt so terribly isolated after I lost my career to lupus. And when my son started school that first September after the confirmed diagnosis I found myself in a daily confrontation with hopelessness.

 KITTENS AT MY FEET - 09/24/03

The unconditional love of those fur babies truly pulled me through.

Here is an amazing video about the loving bond between humans and animals:

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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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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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Found this floating around the internet.

Thought it was pretty funny.

ENJOY!

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