#177 - Good-Bye 2007!

With open arms, open eyes and a heart wide open...

I bid farewell to 2007!

The past few years I had been grabbing tightly to time. Snapping everything up and holding tight... just begging for time to stop.

I needed time to adjust to so many changes...

a confirmed diagnosis of lupus,

the loss of my career,

the loss of my closest friend to cancer,

and the loss of my identity.

With so much time on my hands, I had felt that time was flying, zooming, raging too fast. I couldn't grab it all up.

And being the mother of a young child compounds the speed of time.

Any parent can attest to this as you watch your toddler magically go from smearing chocolate pudding into his hair to running leaping, chasing butterflies, to learning multiplication, to "Mom! I'm too big for that!"

I have learned that by desperately trying to make time stand still, all I have accomplished is to lose time.

Life moves forward... and be assured life stops for nothing.

During all the desperation I encountered over the past few years, I had the curse (and blessing) of having a lot of time on my hands...

or should I say time on my mind?

I was not aware of how much time lupus can give you.

Lupus gave me the time to reflect.

Being too ill to be busy, busy, busy...

I had time to look inside.

I wish I had had a map, or even better a script, to tell me how to go about the whole introspection thing,

but such voyages do not come with instructions.

So, I have bounced around willy nilly looking about at the stuff this life has accumulated.

Lots of junk in the attic of my mind that has gotten cumbersome... heavy.

And a whole passel of really bad habits, including trying to be a time keeper.

While sorting through that mental attic, I discovered that time is an illusion.

You can live in the past, you can be completely immersed in a future that has not happened, yet...

or you can live in the present.

Some folks have even mastered living in a moment... or one moment at a time.

Nope...

not there...

yet.

(working on that, though)

Anyway, I just got on this whole train of thought this evening because of the whole New Year's resolution thing.

I see all those dieting commercials on television and ask myself if I would really be happier if I were 10 lbs. lighter?

If you have lupus, that becomes an almost totally absurd question.

We really can not expend energy on 10 pounds. Between the medications and the disease process... we can be skinny as a scarecrow to inflating like a balloon from steroids.

Ten pounds is irrelevant.

So I tossed out that worn out resolution of guilt that many woman seem to hold onto tightly.

I have decided to lose about 10 pounds of personal baggage, though.

I know I would feel a LOT better if I lost some bad habits... even one would suffice if I can stick with it!

And I know I would feel even better than better if I took on 10 more pounds of soul... the fruits of the spirit:

LOVE

JOY

PEACE

PATIENCE

KINDNESS

GOODNESS

FAITHFULNESS

GENTLENESS &

SELF-CONTROL

Yep, there's plenty here to work with.

So, instead of dreading another year passing, I am EXCITED!

Come this Spring, I will be on the five year mark of a confirmed diagnosis. My grieving time has been long, complicated by the death of a loved one and a terribly long adjustment period.

But, the time for grieving has passed.

I thought lupus had taken everything away from me, but it can not.

If I focus on the things that are truly important, the things that become the legacy we leave behind when we pass from this world...

there is plenty of work (and time) to do.

Lupus can be a hindrance, but she has become my launching pad into the second half of my life.

She has given me the luxury of time, the luxury of quietness for introspection, and in the testing of the dark nights of the soul...

Lupus has guided me to a light, an opportunity to move forward with less baggage...

at least 10 pounds...

and more soul!

#176 - Lupie Thoughts on a Monday

Wish I could say "Lupie Thoughts on a Monday Morning", but I somehow have managed to lose the morning.

I am having a frustrating set back... this seems to happen every holiday season. Have been in bed way too much, and had to use the "big gun" medications today.

So I am sitting on the couch watching (I should be embarrassed to admit this, but here goes...) DESPERATE HOUSEWIVES OF ORANGE COUNTY. Okay, maybe they are not desperate, but they SHOULD be.

Thank God I am not that rich.

I would make a really silly rich woman. I don't like diamonds, I like my tiny little house, I cover up my womanly curves (for Hubby's eyes only), and I do not care one wit what my neighbors are up to... just as long as they are not shooting bottle rockets at my front yard, or drag racing where the kids like to play.

So, what was the point here?

Oh, yes...

I have found my vocational calling while watching the Housewives this afternoon.

One of the ladies has hired some guy to help her have a tiny rear end.

(Sounds desperate to me!)

So, he's going through her food pantry, and tossing out all of the CHOCOLATE!

And I thought to myself, "Holy cow! I WANT that guy's job!"

Can you IMAGINE?

Someone willing to pay you money to come into your house and take away all your goodies????

If someone came into my house and started raiding my ice cream DIBS, he would be thrown into the nearest snow bank...

which is really not that far..

actually...

there's one at my front door.

Okay, okay...

I would let him eat some of the DIBS, and I really wouldn't throw him into a snowbank...

I couldn't even if I wanted to.

But, I sure am not crazy enough to PAY someone to do that!

So, I express my gratitude to the Universe for the Desperate Housewives of Orange County. I am grateful for my Buffalo Gal butt, and that I don't have to pay somebody to cart away my sweets like an evil kitchen nabbing grinch.

'nuf said!

#175 - Science Oddities and an Update

Science Oddities and an Update

Everyone needs a break from lupus... boy do we!

So here's a link to a fun science blog with fascinating science oddities:

Oddee - Quality Entertainment




UPDATE:

I am going to write about :

MABEL THE MIGRAINE MONSTER

and such... feel free to skip!

I am down and out for the count with the breakthrough migraine pain. The neurologist prescribed a very strong medicine for the breakthroughs. It saves me from extra emergency room visits, and untold suffering.

But, I am a tad overwhelmed with the whole MABEL thing right now because she has been incredibly active since Thanksgiving.

The medication is VERY strong, and I tend to wait awhile before taking it. Many of you with these pain issues know what it's like. When you live with constant pain... you learn to tough it out to see if it just might ease up.

The problem with this breakthrough migraine medication seems to be that you have to take it sooner rather than later. It just doesn't seem to be as effective if I wait too long.

I am not complaining about this. Actually I am grateful that there is something now available. But, the medication makes me truly feel STONED. I do not like that feeling. With life feeling so out of control so much, I don't like feeling like my mind is not completely in charge.

I have been on Lyrica since about mid-October. The results seem to be good. I have the use of my left arm and left hand back. It took several weeks to deal with the side effects. I was sleepy all the time, and the munchies hit big time with this one.

From what I am hearing from other online lupus patients, reactions are mixed. Some folks are also benefitting, some have noticed no change, and there have been some allergic reactions.

The Thanksgiving holiday was terrific. We got to spend time with many, many family members. I finally got to meet my two newest great neices! That was beyond the beyonds of happiness.

Got to spend more visiting time last weekend with another neice... so wonderful. (Sorry I fell asleep on you, Chris!)

Had to take a break from the comic strip due to the lupus being naughty this week. Hands are too shaky to paint.

Going to be slowing down with online volunteerism and writing until after the New Year. I want to save the spoons (energy) for my family.

I wanted to offer my gratitude to everyone who has been visiting the blogs and website. I finally got the Site Meter to cohesively count all the locations as one. (I post Life Beyond Lupus on three blog servers). I can not believe how many people have come through this year.

Thank you! Thank you!

I will continue to work hard to update the lupus blogs and website.

Many Blessings to Everyone!

#169 - Lupus Awareness Month

Free graphic. Spread the word.

:)

IMAGE CODE:

[IMG]http://img.photobucket.com/albums/v613/WINGA/LIFE%20BEYOND%20LUPUS%20website/lupusawarenessmonth.jpg[/IMG]

#168 - House Cleaning and Disability

I lit the Saint Anthony devotional candle this morning.

Catholics consider Saint Anthony the patron saint of lost causes.

I took a brief inventory of the clutter piling up around the (not so) Cozy Cottage and decided I was going to need some Divine Intervention to get this place back to its original coziness.

Housekeeping and lupus do not mix.

If you are actually still reading this, then I know I am probably preaching to the choir.

How do you handle the home maker role when you have a disability?

Not everyone is into devotional candles…

so I KNOW there have got to be many a secret to cozy hominess out there.

Add your suggestions in the comments.

I’ll post your suggestions next entry.

Don’t forget!

Add your blog or web site link if you would like readers to visit you.

ENJOY!

© 2007, Loretta Kelly, M.S.W.

Read more blog entries about: LUPUS & HOUSE CLEANING

p.s. Our broadband server is still on the fritz. We have a repair person coming in on Wednesday. I have resorted to dial-up… which is slower than SNAIL MAIL!

#165 - Stress + Mess = Depression

I have been doing battle with depression...

again.

I had made huge plans for September on launching my website and really throwing myself into several creative projects.

I knew I was going to be very lonely once Little Bear returned to school, and I also knew I would have more time to devote to writing.

But, I had not planned on the following:

1. The Nurse Practitioner at my rheumy's practice resigned.

I have cried several times over this. She is a sweetheart and had been the primary supportive person on my treatment team. She is an excellent listener, never rushed, and always full of trying to find a way to work through each problem that lupus was throwing at me.

I knew the resignation was coming, and I understand the need for it... but the selfish part of me really, really is frazzled.

Since she's been gone... my medications keep getting messed up and now I have to start over again with new frontline care people who don't know me or my needs.

I have had trouble getting my pain medications filled properly, to my anti-depressants taken care of.

With all the juggling with the anti-depressants (for almost a FULL WEEK)... I am a mess.

2. My medication regimen has been screwed up.

As stated above.

After 5 years of being with my rheumy... I feel like a new patient. My pain has been managed well until three months ago.

As many of you with chronic pain know... there are times when you need less or more pain medication depending on your symptoms. In all my time as a patient with my rheumy... I have been treated respectfully, but now... because the frontline care is new... I had to spend way too much time on the phone explaining my pain management to the new NP AND having her request that I talk to my pharmacy because her office made a mistake!

And being treated like the NP did not believe me.

How many of you have been through that revolving door?

It is humiliating isn't it?

3. Emotional Distress

There are always going to be some people in your life who are going to throw a bowling ball at you when you are drowning.

I have had a few too many bowling ball tossers in a short span of four weeks.

(Thank you to all those special neices, nephews, and their spouses who helped me dodge a few bowling balls by offering respite, or sending a note, or visiting. And to all my e-mail and phone buddies.)

4. Trying to do too much.

I still try to live every day like I don't have lupus.

So when the fatigue jumps up and bites... I have no one to blame but myself.

And the type of depression I struggle with grows in the fertile soil of fatigue.

So what to do?

Well, this morning, while sitting in my pajamas still at 11 a.m. and eating a vanilla pudding cup for breakfast... I said to myself...

"This has got to stop."

So here I am trying to take control of this depression.

The best thing I know how to do when I am like this is to write.

(Oh, and to stop eating sugar for breakfast... and to GET DRESSED!)

The physical pain is really bad today, but I am hoping if I can just get this brain in between my ears to get working... I can channel my attention away from the pain.

I already have actively taken control of what I can control reguarding stress and setting healthy emotional boundaries from bowling ball tossers.

And in writing this... I now feel silly for feeling sorry for myself.

Why?

1. I have a doctor and health care.

2. My medication problem has been resolved and I go for a follow-up appointment with my rheumy AND primary care doctor next month.

3. I know how to dodge bowling balls.

4. There are so many people I love, and who love me in return. It is way too easy when one is depressed to remember that.

5. I am in control of managing my activity level... I will give myself permission to slow down and to rest.

(Just gotta work out the feeling guilty part).

So just remember folks:

STRESS + MESS = DEPRESSION

For tips on managing depression symptoms try these links:

Recovering from Depression: Self-Help, Coping Tips, and Support

Understanding Depression: Psychological Self-Help

You can read more of my blog entries about DEPRESSION here:

DEPRESSION

#164 - Live Lupus Chat: TODAY 3:00 pm EDT: Clinical Trials & Lupus

TODAY!!!

MARK YOUR CALENDARS: The Lupus Foundation of America is proud to present live moderated chats, featuring the nation's leading experts in lupus. This is your opportunity to ask a question and learn more about lupus from thought leaders in a number of medical disciplines associated with lupus. READ MORE --->

Clinical Trials & Lupus
Guest Speaker: Mr. Ken Getz
Wednesday, September 12 - 3:00 p.m. EDT

ENJOY!

#163 -LUPUS FOUNDATION OF AMERICA... now available at your local blog!

The Lupus Foundation of America (LFA) is increasing its online presence.

As some of you already have noticed the LFA now provides live chats with lupus experts. The upcoming schedule is available at the link below:

LUPUS FOUNDATION OF AMERICA

and now... here's a real treat!

The LFA is now available in blog format:

On the Road to a Cure

Check out the latest entry:

On the Road to a Cure: 'Flare' for Fashion

For all of you lupus fashionistas and Project Runway fans, this looks like the place to be on October 18th!

#162 - THANK YOU!

THANK YOU!

Christine is just a few dollars shy of her lupus fundraising goal:
HERE IS THE DONATION LINK:

Lupus Alliance of America - Upstate New York Affiliate

Thank you so much to all of you who threw out a donation HOOZAH!

And it is not too late for a last minute HOOZAH for anyone who was still thinking of donating.

If you are not into the internet donation thing, that's cool.
Keep an eye open to your local community events. The Lupus Walk happens throughout the country.

The funding from these activities helps pay for the incredible educational and support programs offered by the Lupus Foundation of America:

Lupus Foundation of America

For many of us with lupus (and those waiting for a confirmed diagnosis) the LFA is the first stop in learning how to cope.

#161 - A Special Request

My Neice, Christine, is going on her third year of volunteering to raise funds for lupus education and support via the Lupus Foundation of America.

Here is her statement:

Three years ago, I learned about Walk on the Wild Side for Lupus. I feel privileged to be able to help others by participating in this event, and I am grateful for all of the people who have sponsored me in the past. If you're reading this now, then I hope to be able to add you to the list of individuals who have offered their support.

Chances are you're familiar with lupus in some way; maybe you yourself are afflicted. I walk for those who cannot, for those people whose energy has been robbed by this disease, but above all, I walk with the hope that a cure can be found. Your donation will help fund research, education, and support for those affected by lupus. Thank you so very much!

HERE IS THE DONATION LINK:

Lupus Alliance of America - Upstate New York Affiliate

... and here is her picture:

Isn't she a cutie?

(I just love to be the doting auntie.)

Anyway... if every subscriber to Life Beyond Lupus donated $5.00, well... that would go well beyond her goal... and we would all be able to jump up and down and say "Hoozah!" we did a good job!!

Just a thought...

HOOZAH! everybody!

#160 - TIME DOESN'T WAIT

When you are the parent of an 8 year old house elf… this is bound to happen to you sooner or later.

As of last night, I became the Momma of three goldfish; prizes that Little Bear proudly brought home from the County Fair.

The heat has been so bad this summer; I was unable to go on our annual outing to the Fair.

I was pretty disappointed yesterday, thinking of the fun that I was missing.

But, if I HAD been at the Fair, we probably would not be enjoying our new scaly additions. I would have put the nix on it, thinking too much about having to tend to another pet.

Instead the surprise was popped on me by having three plastic baggies of fish thrust into my hands when the guys came home.

“Here, Mommy! I’ve named the big one Gulpy!!”

(Yes, I am not the only one in the Cozy Cottage that talks with exclamation points.)

“What am I supposed to put them in?” I asked no one in particular.

We hunted around the house for something worthy of bearing three gasping goldfish.

The best I could come up with was a huge ceramic mixing bowl.

There was a lot of fretting about being able to fit three goldfish in one bowl.
I grabbed a second smaller bowl…

Maybe if I put one in there and two in the other… that would be alright?

Then the water preparation started, with getting the water the right temperature so as not to shock the poor fishes.

Shock?

As if being yanked out of a garbage can full of overcrowded goldfish, thrust into baggies, being hauled around in muggy summer heat by a little kid for hours at the fair, riding in a car, and then being dumped into a mixing bowl is not enough?

So I placed two in one bowl, the third in another. Watched them poke around for a bit, and then realized how filthy the water for the fish in the smaller bowl had been.

Uck!

The fish was swimming in its own poo!

I realized I was totally clueless on how to relocate the now named Gulpie out of the little bowl to keep him from gulping the poop.

In desperation, I used the soup ladle.

(Mental note: Get a NEW soup ladle.)

Finally, we got the fish settled. We spent an hour of staring at them while they surveyed their very plain world on the inside of a mixing bowl.

I wondered how fish think.

Little Bear and I made up pretend conversations between the fish. This turned into a giggle fest.

While laughing outwardly, inside I was desperately praying, “Please. Please don’t let these fish kick the bucket. Oh, and while You’re at it, God, could you keep them from jumping out of that bowl? I don’t want to step on something squishy in the morning.”

As if God doesn’t have more important things to do.

“Can we feed them? Can we feed them?” the merry house elf inquired.

“Not, yet,” I told Little Bear, “I think we need to give them some time to adjust.”

(I was thinking I am the one who needs time to adjust.)

We decided to go learn something about goldfish on the internet.

Wow!

Who knew that there are volumes of material on goldfish?

We surfed through the feeding and the tank maintenance information.

Then my little guy saw spawning listed as a topic.

“Can we breed them?” he asked.

Okay, obviously now we were going to have a teachable moment about the birds, the bees and the mating habits of goldfish.

Did you know they don’t…

Um…

Conjugate?

They don’t need to touch each other to procreate.

The male gets pimples on his gills when he is ready. The female gets round.

The male chases her around, and there is some body slapping. The female releases her eggs onto the leaves of water plants, and then the male goes swimming about leaving milt to fertilize the eggs.

After that, the goldfish parents go back to business as usual.

If the parent fish see their new born babies, they eat them.

Little Bear was fascinated. I was feeling a tad repulsed.

We went back to look at the threesome. I was seeing them in a whole new light.

We have a tendency to credit our pets with human qualities, but as I watched these glistening fishy aliens I realized that these fish certainly are not human.

I thought about Greek mythology, in particular, the character known as Cronus.

Cronus is well known in mythology for eating his children.

Here’s the story.

The ancient Greeks believed that the creation of earth began with Gaea. Being that there was no mate, Gaea created her own child, Uranus.

Mother and son produced many children, twelve who were known as the Titans.

Things got chaotic.

Cronus took control by castrating his father (who died from the injury) and then in order to remain the new ruler, he ate all of his children (the first Olympians).

Well, this really ticked off Cronus’ wife, Rhea, so she rescued the last child.

She secretly fed Cronus a rock. He ate up thinking that the rock was the last child.

This child, Zeus, survived due to Rhea’s ruse.

For some reason I can not recall… Cronus took off and stayed in Italy and Zeus became the big time deity on Mount Olympia.

Cronus got a name change to Saturn and was celebrated on Saturnalia.

You can’t kill Cronus.

He represents Father Time.

Time gives us a sense of order over chaos.

And time eats up our children.

I thought of this while gazing at those child eating pets.

And then I gazed at my son, who is growing so tall. Every day he gets bigger, and wiser.

Time is eating up his childhood.

Time is eating up me.

Time is eating up all of us.

I love the goldfish now.

This morning they were placed into a 15 gallon fish tank hastily purchased to make them comfortable.

They have found a home here at the Cozy Cottage.

I like watching them. As I watch I am reminded that time moves on.

Time stops for no one.

You can not stop time, and you can not destroy time.

Pay attention, because if you don’t…

Time will eat up your children and you like a hungry goldfish.

© 2007, Loretta Kelly, M.S.W.

#159 - Lupus & Adoption Update

Special thanks to MySpace friend, Gail, for locating this blog:

Our Ethiopian Adoption Story: PEI Camping Adoption Gathering

If anyone has more information about lupus and adoption...

please send your information in!

We have several readers who want to learn more.

THANKS!

#157 - LifeBeyondLupus.com: Time to Add Your Links!

Hi everyone!

Links are now being added to my new website:

LIFE BEYOND LUPUS

You can add your URL address here:

ADD YOUR LINKS to lifebeyondlupus.com

I hope to see lots of my online buddies there!

If you do not have your own site, but you have some terrific information to share…

PLEASE JOIN IN!

As I get things up and running, I will be featuring many of the wonderful sites and blogs that you folks have produced.

PLEASE NOTE: Links deemed inappropriate by this author and/or spamming will be permanently blocked from this site.

#156 - Lupus News Updates: July 29, 2007

07/29/07

News Updates from Yahoo:

Sunday, July 29, 2007 10:15 AM PDT

Research links genetic mutations to lupus

EurekAlert! Sun, 29 Jul 2007 10:08 AM PDTWINSTON-SALEM, N.C. – A gene discovered by scientists at Wake Forest University School of Medicine has been linked to lupus and related autoimmune diseases.

Lupus Foundation announces symposium

Muskogee Phoenix Sat, 28 Jul 2007 9:28 PM PDTThe Lupus Foundation of America, Oklahoma Chapter will hold a Lupus Symposium from 9 a.m. to 1 p.m. Saturday in the Wacoche Hall at Bacone College, 2299 Old Bacone Road, Muskogee. A working lunch will be provided. The event is free to the public.

Popular character had life of hardship

Sunday Life Sun, 29 Jul 2007 1:58 AM PDTHis wife Dolores had fought a long battle against the degenerative auto-immume disease Lupus. And as Robert mourned her loss, he remained upbeat and positive, putting on a brave face while he cared for his only child, Alison.