#40 - The Fruits of Lupus

This day started as a bad one.

For me, that is... and Ms. Lupus was having a sick happy dance all over my feelings earlier today.

I have been staying up until 2 to 3 a.m. every night for months now.

It started when Ellen died.

At first I thought it was just grief, but this morning I fought mightily hard with myself. I feel guilty for this staying up too late thing. I am so exhausted by sunrise, I can not be of use to anyone in the Cozy Cottage. And my guys being the way they are, let me sleep and go on with the first part of their day without a fuss.

So I asked myself over and over again... why am I doing this?

Why?

Is it insomnia? Is it the medications? Or is there something a bit deeper going on here.

Of course, I knew the answer.

I was just ignoring it, because the answer hurts so bad it cuts up my heart.

I HATE BEING ALONE ALL DAY.

To wake up in the morning means an extra three or four hours of being alone while the guys are out in the world. An extra three or four hours to dwell too much on my life before lupus.

And without my Ellen there to phone call when the panic strikes... I would just rather sleep through the worst of this, thank you very much.

I really do feel awful today, physically.

So I was slumped on the couch earlier, praying for some relief from the bad pain and the shakiness from the fatigue... and I watched a broadcast about Siegfried and Roy.

Remember Roy?

His white tiger took a chomp out of him during a live performance at his theater in Las Vegas.

This guy is fighting every day to just try to stand up.

And my heart burst as I listened to him speak with profound gratitude for his life. Not the life he planned, he's only human and he has his moments of feeling low, but God is with him. He has the faith, and with that life is beautiful.

What has the accident done to him?

"I want to help others. I love people so much!"

And so he does.

And I cried some more, not for myself, but for the shame of wanting to throw the towel in a hundred times a day.

I pushed myself this afternoon to folding the laundry and putting it away.

I have been at it for five hours now. I have to sit and rest a lot because of the weakness. I have been in the bathroom several times to be sick... the lupus has been juggling between my digestive tract and my Mabel the migraine monster self.

And my darling just turned seven years old son, Little Bear, sets it upon himself to help out this afternoon.

Yesterday, he watched me call cleaning services, trying to interview someone, anyone on the phone, who can be flexible in helping a lady with lupus clean up the Cozy Cottage.

No luck so far.

Now this little kid of mine must have been eavesdropping and he has his little mind ticking away.

He comes off of the bus today and I give him a choice of one out of three chores I need done. He picks take the dog outside and get some fresh air for awhile.

Later I ask if he could fold his socks.

He does... neatly.

He is starting to have fun, so he helps me go through his dresser and pick out the winter stuff for storage and the clothing ready to go to a new home.

And soon I am totally crashed.

I make him a lunchbox dinner of cold cuts because Daddy is working late. I sit on the couch and watch him eat. I am too sick to eat anything.

Bear eats, cleans up after himself... and the next thing I know my kid offers to polish the television. I show him how... and then he starts scrubbing his toys... and then the totes... and then the bathroom sink, the tub, the shelves...

What's next Mom?

"Oh! You have done enough, Sweety!!"

But, he trounces off into the kitchen and scrubs the countertops, then the outside of the frig, the outside of the microwave.. the kitchen floor!

It's okay, Sweety, you don't have to do any more... my goodness, you have worked so hard!

More Mom!

He grabs a wipe and does a final polish on the sink and tub.

Why are you doing this, , Little Bear?

"Because I love you!

I want to make you happy!"

Oh, dear Little Bear.

I am happy.

Sometimes I am happy and I just foolishly don't know it.

Every day that I am your Mom is the happiest day of my life.

And I will never ever forget this.

Lupus or no lupus... my life is good...

Life is good with Little Bear in it.

I hate lupus, I truly do, but I see the son that is growing before my eyes. He is more and more compassionate with each passing day. His Mom has lupus, so he knows things little guys usually don't know.

He doesn't complain too often, but his heart is good and in the right place.

The can do, help out spirit of Little Bear is one of the fruits of this lupus.

#39 - Cutting Medication Costs

Here are some current tips for cutting your prescription medication costs:

WebMD with AOL Health - Reducing Medication Costs -- Topic Overview

More links:

Health Care: Consumers and Patients Index Page

For Patients 55 years and older: BenefitsCheckUp - NCOA's Online Screening Service

Information on new medications: U.S. FDA CDER Home Page

#38 - Funny Fine Art & Lupus

Here is a site that I love to visit often.

PainterJayne has a wealth of anecdotes about how she copes with lupus.

I learned how to prioritize and not agonize over the chores that sap my energy after reading about the choices she has made in order to pursue her love of painting.

ENJOY!

Funny Fine Art & Lupus

#37 - Lichen Sclerosis - Possible Autoimmune Disease?

I found this news article today:

BBC NEWS Health 'I am fighting for my sex life'

This report discusses a condition called lichen sclerosis.

I saw the word sclerosis and immediately thought "autoimmune disease".

Lichen sclerosis is a chronic inflammatory disease of the genital skin. It is scarring and painful. A cause is not currently known at this time, but physicians are suspecting an overactive immune system.

Learn more about this condition here:

Questions and Answers About Lichen Sclerosus

Online support is available here:

U.S. National Vulvodynia Association

U.K. National Lichen Sclerosus Support Group

U.K. Vulval Pain Society

#36 - Where is Entry #36

Where the heck is Entry #36?

I wrote and wrote about CNS lupus.

And the more I wrote... the more I realized just how little I know.

I got bored with myself...

so I deleted it.

Some call that writer's block.

I call it sparing my reader's from a wasted few minutes of time.

:)

WELCOME!

Hi!

I was diagnosed with systemic lupus in 2003 .

My health challenges forced me to leave behind a career as a social worker, professional musician, and superwoman.

My life is quieter now.Come and join me on this journey...

#35 - Lupus Inertia

in·er·tia (ĭ-nûr'shə) n.
Physics. The tendency of a body to resist acceleration; the tendency of a body at rest to remain at rest or of a body in straight line motion to stay in motion in a straight line unless acted on by an outside force.
Resistance or disinclination to motion, action, or change: the inertia of an entrenched bureaucracy.
[Latin, idleness, from iners, inert-, inert. See inert.]in·er'tial adj.in·er'tial·ly adv.

FROM: inertia: Definition and Much More From Answers.com

I am now three years into living with systemic lupus.

My official confirmed diagnosis anniversary is at the end of May.

Immediately after the confirmed diagnosis there was a very brief euphoria...

believe it or not.

I think this is pretty common for folks who have been battling for years with an unrecognized medical condition.

You get this huge surge of relief that you are not crazy, this is real, and....

maybe, just maybe...

now you can be cured.

Having a name over an unknown adversary helps immensely too.

Once you have a name for what you are struggling over...

you gain some power over it.

So there was this very brief period after diagnosis in which I thought I could now "conquer the world".

Okay this is what I am dealing with.

This is my life.

I can regain control and move on from here.

And that is called the first stage of grief.

D-E-N-I-A-L

My denial did not last too long.

Energized with a knowing that I have systemic lupus, I tried to push myself. Hard to explain, but I am sure many of you with lupus have been through this.

You actually had to invest energy into proving to the medical world that something is organically wrong, and now you do not have to prove yourself anymore. You are finally being taken seriously.

AMEN!

Let's pull that life together... just push a little harder and everything will be okay.

I have lupus, but, heck... it can't be too bad, right?

And I pushed right into a huge crash landing that put me into an emergency room, MRIs and a steroid injection about two months after diagnosis.

Followed promptly by a spiralling depression that taught me that I am a mere human being.

I spent a loooong time in that depression.

And inertia set in.

Just getting out of bed daily was a battle.

That first wave of depression was tough, but I knew I could pull out of it.

I am a therapist after all.

I know what happens, I know what medications are needed, I know what support is needed and I know what I am supposed to do to work my way out of it.

I found writing to be the greatest release... and that is how blogging about lupus began.

I am not the poster child of quiet endurance and courage.

Anything but.

I have been writing about the kicking and screaming and hissy fits and pity parties... the whole nine yards.

I wrote and wrote and wrote... and I began to feel better.

Not so much physically, but emotionally, I was pulling it together.

The inertia is always there in the background, but I was begnnning to sweep it into a corner and tell it to shut up and leave me alone for awhile.

Everything changed this past September.

My best friend died of ovarian cancer.

In the quiet months... very quiet... way too quiet months that have followed since her death...

I have witnessed the end of my youth.

She embodied my girlhood.

We were pals since our teens.

And having to let go of her, cresting the wave of mid-life, while battling with some more setbacks from Ms. Lupus... I am slammed right back to where I was three years ago after the first "crash".

Well.. that was what I was thinking when I started writing today.

But, this crash is different.

More profound.

The lupus has made itself worse in some ways. I am weaker than I was three years ago.

This past autumn, I started having vertigo, and falling.

I developed leg spasms that could go on ceaselessly for days... not just a few minutes or hours... but non-stop for days.

So a new medication was introduced... which stops the spasms and keeps me vertical. But, the trade off has been a more disorganized mind.

Or is it the sheer raw grief?

Or is it the depression that dances with lupus?

Or is it the lupus doing a dance on my brain?

Does it really matter?

I am back down on the ground to fighting my way out of bed everyday.

I was pretty much IN bed over the past few weeks, so I have lost a lot of hard earned ground.

My stamina is the pits. I get shaky just walking about our little house.

I told my husband that maybe this is the frustration an athlete faces after an injury?

You work real hard, get knocked down, and now have to work even harder to get back to where you were.

And I am fighting mightily with inertia.

I slump onto the couch or in a chair and "zone out".

I can do this for hours.

The Cozy Cottage is a not so cozy mess.

My personal relationships have gotten messy as I have no energy to keep up with anyone.

I use what little energy I've got for my guys.

And then slump back into a heap after Little Bear is to bed.

I hate this.

And that is probably a really good thing.

Because hating this inertia is the momentum to drag out of it.

Although I have crashed, unlike the first time, I am no longer in uncharted territory.

This can and will get better.

I HATE inertia.

I am to the point of feeling disgusted at myself for watching way too much television, shutting myself in, and hiding from the world.

And thus begins a new stage in grieving over the lupus...

A-N-G-E-R.

I have found that I am really angry that this has happened.

It has happened not just to me, but to my husband, my son, my mother, my sisters, my neices and nephews, and my friends.

Lupus does not happen in isolation.

It's like a sinkhole.

Everyone in my life circle can get caught in the damaging path of lupus.

That is if I allow that to happen.

Some of the consequences are unavoidable.

Roles change.

Adjustments are made.

Life in your family changes.

Your old friendships have the potential to become better, but you find that you are going to lose friends who fail to comprehend the "new" you. You make new friends, you adjust...

life moves forward with or without you.

But, this inertia does not help.

It only does harm.

I am losing ground, every day spent in inertia makes the next day even more difficult.

Everyday spent in inertia is robbing my loved ones.

Everyday spent in inertia is robbing the best of what I have to give.

So is the inertia due to depression, grief, lupus, medications, sleep deprivation?

Does it really matter?

For some, yes...

it is important to tag down what is causing the inertia so that you can get power over it.

But, for me... right now... I really do not care where the inertia is coming from.

I just refuse to succumb.

So I write.

And I will continue to write.

Write, write, and write some more to make everything right again.

I received a really thoughtful note from a reader last week.

Thank you to that person.

I tried to e-mail you back, but the e-mail would not go through.

So I thank you for telling me that you have been reading this writing for over one year now.

Thank you for letting me know.

Thank you for that.

Because that is what keeps me from hiding on the couch all day and succumbing to this lupus inertia.

#34 - New Form of Breast Cancer and Paget's Disease

I just received this message from one of my sisters who happens to be a Physician's Assistant.

Please read and consider sharing with your galpals.

New kind of Breast Cancer - Paget's Disease

Please forward to all of the women in your lives Mothers, daughters, sisters, aunts, friends, etc. In November, a rare kind of Breast Cancer was found.

A lady developed a rash on her breast, similar to that of young mothers who are nursing. Because her mammogram had been clear, the doctor treated her with antibiotics for infections.

After 2 rounds, it continued to get worse, so her doctor sent her for another mammogram. This time it showed a mass. A biopsy found a fast growing malignancy. Chemo was started in order to shrink the growth; then a mastectomy was performed; then a full round of Chemo; then radiation.

After about 9 months of intense treatment, she was given a clean bill of health. She had one year of living each day to its fullest.

Then the Cancer returned to the liver area.

She took 4 treatments and decided that she wanted quality of life,
not the after effects of Chemo.

She had 5 great months and she planned each detail of the final days.
After a few days of needing morphine, she died.

She left this message to be delivered to women everywhere:

Women, PLEASE be alert to anything that is not normal, and be persistent in getting help as soon as possible. Paget's Disease: This is a rare form of Breast Cancer, and is on the outside of the breast, on the nipple and aureole It appeared as a rash, which later became a lesion with a crusty outer edge. I would not have ever suspected it to be Breast Cancer but it was.

My nipple never seemed any different to me, but the rash bothered me,
so I went to the doctor for that.

Sometimes, it itched and was sore, but other than that it didn't bother me.
It was just ugly and a nuisance, and could not be cleared up with all the creams prescribed by my doctor and dermatologist for the dermatitis on my eyes just prior to this outbreak.

They seemed a little concerned but did not warn me it could be cancerous. Now, I suspect not many women out there know a lesion or rash on the nipple or aureole can be Breast Cancer.

(Mine started out as a single red pimple on the aureole.
One of the biggest problems with Paget's disease of the nipple is that the symptoms appear to be harmless. It is frequently thought to be a skin inflammation or infection, leading to unfortunate delays in detection and care.)

What are the symptoms?

1. A persistent redness, oozing, and crusting of your nipple causing it to itch and burn (As I stated, mine did not itch or burn much, and had no oozing I was aware of, but it did have a crust along the outer edge on one side.)

2. A sore on your nipple that will not heal. (Mine was on the aureole area with a whitish thick looking area in center of nipple).

3. Usually only one nipple is effected. How is it diagnosed? Your doctor will do a physical exam and should suggest having a mammogram of both breasts, done immediately. Even though the redness, oozing and crusting closely resemble dermatitis (inflammation of the skin), your doctor should suspect Cancer if the sore is only on one breast. Your doctor should order a biopsy of your sore to confirm what is going on. This message should be taken seriously and passed on to as many of your relatives and friends as possible; it could save someone's life.

My Breast Cancer has spread and metastasized to my bones afterreceiving mega doses of chemotherapy, 28 treatments of radiation and taking Tamaxofin. If this had been diagnosed as Breast Cancer in the beginning, perhaps it would not have spread... TO


ALL READERS: This is sad as women are not aware of Paget's disease. If, by passing this around on the e-mail, we can make others aware of it and its potential danger, we are helping women everywhere. Please, if you can, take a moment to forward this message to as many people as possible, especially to your family and friends. It only takes a moment, yet the results could save a life.

To learn more about Paget's Disease please go here:

Paget's disease of the breast : CancerBACUP

#33 Chronic Fatigue and Brain Injury Connection

Researchers are now discovering that chronic fatigue for some folks may due to brain damage caused by glandular fever.

The culprit?

Epstein Barr virus.

One out of every ten patients with Epstein Barr suffer from long term fatigue.

Here's the clincher...

Scientists are pretty darn sure there is a link between infection with Epstein-Barr and Systemic Lupus later in life.

The correlation is high for African-Americans (who are more prone to lupus), but also significant for Cacucasian lupus patients.

Food for thought.

Read more about the research at the following web pages:

BBC NEWS Health Chronic fatigue brain injury link


ScienceDaily: Lupus And The Role Of Epstein-Barr Virus

Epstein-Barr Virus

#32 - Worn Down to a Nubbin

What is a nubbin?

A small piece of coal, an itty bitty remainder of a pencil.

I am worn out to a nubbin.

For the first time since diagnosis, I truly have been bed ridden for an extended period of time.

Yesterday, I could hardly leave the bed because of the leg weakness.

The worst of it is, that I have to work doubly hard to get what little stamina I had to return.

So I pushed myself today... trying to see if I can recharge the old batteries here.

This is not the portrait of the woman I once was.

My days were so full.

Counseling all day, stopping home for a bite to eat and then darting out for rehearsals for this or that show or music adventure.

Now I have to get psyched up to walk into the living room... spending hours contemplating if I can push that vacuum cleaner across the rug.

URGHHH!

A very healthy dose of humility.

I am disorganized and often discombobulated.

The price we pay for lupus.

And I wonder the cost to society... when there is probably a cure just around the corner... without the funding or interest to intervene.

The problem with lupus is that it is considered an "invisible illness":

Ten Resolutions™ - Articles - coping with an invisible illness

We try to put our best foot forward. We try not to complain, we try to the best of our ability to function, but the reality for someone like me is that the lupus is disabling.

I can't grocery shop... the effort is incapacitating. Don't drive... I am an accident waiting to happen. Can't carry on a conversation for more than a few moments. I forget what we were talking about.

We were supposed to be in Toronto two weeks ago, and all plans had to be cancelled because I could not be well enough to even ride in a car, let alone do anything except sleep in the hotel for the duration of the trip.

That really has knocked me down.

You can't see the "shakes" that develop from the grinding fatigue.. unless you are paying very close attention.

You don't see the hair loss, because I have put a lot of effort in covering it up.

The lupus sores may not always be apparent, I have become the master of disguise when in public... learning to hide the lupus sores with strategic make-up, hats and bangs. Long sleeves help too, and long flowing skirts.

We just don't make good "poster children" for a cause.

And thus, we go largely ignored.

We are way too sick to advocate for ourselves or kick up a fuss in Washington DC.

Those close to us are tuckered out too... form caregiving and taking on the extra burdens from things that we used to be able to do for our families and our homes.

Oh... don't get me started.

The pain is wearing me down to a tiny line on the paper.

Pain, pain, pain... no relief... just different levels.

After almost three years of this, I still say to myself, when I feel better I will...

But, the "feeling better" does not come, and it has gotten to the point where waiting for that is long past.

It's been a rough year.

But, exactly who doesn't have a rough year?

Hurricanes, tragedies large scale and personal.

One thing lupus has taught me is that no one is immune to suffering.

And if I am lucky... I guess, at least my personal suffering has a name.

Before diagnosis, I used to call this illness, Pocohontas.

I have absolutely no idea why.

Just goofy that way, I guess.

Life was almost easier with Pocohontas as compared to lupus.

With Pocohontas, there was a ton of hope that this would pass.

Not anymore.

I had signed on for a trial research for chemotherapy for lupus.

The reports are showing one big dose will put you in full remission for at least one year.

I got through the initial stages, did the paperwork, and the telephone interviews... and was abruptly turned down when the researchers learned I have ANA negative lupus. Less than 5% of us have this condition. Many physicians require a positive ANA for a confirmed diagnosis of systemic lupus.

Here's the clincher though... I have a skin biopsy that came back positive for lupus in spades. This is 98% accurate, more accurate than the ANA.

But, I didn't fit the clinical profile for the study.

I am bumming about this larely.

I think I would gladly give up my hair and do some bazooka barfing for a chance to go into full remission.

Just not meant to be.

Instead I slowly poison my body with low dose chemotherapy day after day after day...

And when I have been losing ground like I have been doing since this past summer... I now wonder if I could ever make gains back after all the damage the lupus is doing to me?

So the nubbin has spoken.

I don't know if you can call this ranting depression.

I don't feel sorry for myself.

I don't want to crawl in a corner and hide from the human race.

I fight, fight, fight every day.

Just tired today.

I pray a lot, but, you get soul weary at times.

You just do... it is only human.

So the nubbin has spoken... now back to our usual programming.

#31 - Advocacy Summit for Arthritis

Advocates from the Arthritis Foundation are in Washington D.C. this week to promote :

Arthritis Prevention, Control & Cure Act

Use the link above to advocate online.

Learn more about the Advocacy Summit here:

Advocacy Summit

#30 - Listen to This One!

I like to use a singing bowl for healing meditation (Tibetan Singing Bowls).

I don't know how to explain this, but the sound just feels good.

So does humming, singing, music...

There must be something to sound and its effects on our bodies.

So, imagine my surprise when I stumbled upon this article:

Will Doctors Diagnose by Listening to Your Cells?

Researchers have discovered that the protein in your body makes noise.

And get this... if your pour vodka on a yeast cell ... it "screams".

Interesting.

I wonder what lupus "sounds" like?

#29 - Chrohn's Disease Linked to Weakened Immune System

A new study reported in the BBC states that Crohn's disease may be linked to a weak immune system instead of the previously suspected overactive immune system:

BBC NEWS Health Fresh theory on cause of Crohn's

For those of you who are struggling with the dual diagnosis of Lupus and Crohn's please visit this site:

Kim's Lupus and Crohn's Page