On a scale of 0 - 10, I'd say today is...

It seems I live my life by the numbers.  400 mgs of this.  2.5 mg times 8 of this.  2000 mg of that.  6000 IU of this.  20% of that.  All in pursuit of the elusive ZERO.

At any give moment, I am in pain.  Most days it lurks just under the surface of my consciousness effecting my mood and energy level but not at the forefront of my attention.  On days like this Mama Mia often asks me if I'm in pain.  I stop and think a minute and answer in the affirmative.  She just nods and says, "You were moaning."  I guess I moan and groan under my breath and don't even realize it.  I'd call this a 3 or a 4.  Other times, the pain greedily absorbs all of my attention and drives me to my bed where sleep is the only respite.  I'd call this an 6 or 7.  Only one time, thankfully, has the pain reduced me to tears.  I called that an 8.  Pain, you see, is measured on a scale of 0 - 10.

So far the only pain meds I've used are the anti-inflammatory that is a daily friend and extra-strength Tylenol.  I am one of the lucky ones who haven't had to use narcotics.  I'm hopeful I will be able to avoid the use of these drugs as I have been blessed  *snort* with a high pain tolerance.

Recently, my doctor has put me on a leave of absence from work to try and get a handle on my lupus.  I am able to function at work, but it takes everything out of me.  I rest diligently over the weekends and begin to feel much better, but by Tuesday afternoon, I am toast.  Two steps forward and three steps back.  With the new meds I am on, we are making progress, but I need some space to rest and give my body a fighting chance.  I also need to get off the steroids that can have nasty side effects.  Taking so much time off was a VERY hard decision for me because I feel like I'm letting my students and staff down, and I have never been a quitter.  But finally, Mama Mia and my doctor talked me into it.  I will be off at least until the end of May but perhaps even until next school year.  And you know what?

IT'S WORKING!

I snagged the elusive ZERO for the first time in nearly 2 1/2 years.

For two days last week, I had ZERO pain.  Zip!  Zilch!  Nada!

For the second time, the pain has made me cry.  This time tears of thankfulness and hope.

That, on a scale of 1-10...is a TEN!

*cough* *cough* Pardon me while I sweep a bit of this dust away...

Things tend to get a bit dusty when left unattended for nearly nine months.  *sneeze* *cough*

Life has been a bit...busy?  Yes and no.

Life has been a bit taxing?  Yes and no.

Life has been a bit...

Well, let's just say it has been full of challenges and pain and frustration and learning and fatigue.  OVERWHELMING FATIGUE.

Nearly three years ago, when I began noticing swelling in my feet and lower legs, then my hands, then my face, I never could have predicted that I would find myself living with a chronic illness.  But that is where I am today.  I am LIVING with a chronic illness.  An illness that will never go away.  An illness that has no cure.  An illness that COULD, but in all probability WON'T, kill me.  An illness that can be kicked into remission.  But one that will return and flare as it wills.  An illness that will never again allow me to have "fun in the sun".  An illness that, at times, robs me of memory and words and the ability to think clearly and quickly.  An illness that, while a result of Original Sin, is not a result of any particular sin on my part.  An illness that is not because I NEED to learn something.  But an illness that WILL teach me a great many things.

So, while life has been busy...new job, monthly 200+ mile trips to UCLA, remembering when and how and where to take all the new meds and supplements I'm on...life has also been slower.  I am no longer able to accomplish what I used to.

And, while life has been taxing...see above...it has also been less active.  There have been months where I have been unable to do much more than work.  Literally coming home from work, eating dinner and falling into bed only to sleep till the last possible moment before getting ready for work in the morning.  Weekends spent in bed, sleeping 18-20 hours a day while my immune system worked overtime killing the very cells it was created to protect.

My mom has been my rock through all of this.  She has gone to every single doctor's appointment with me...Every.  Single.  One.  She has washed countless loads of laundry when my arms were too sore and weak to lift the clothes from the washer and hang them to dry.  She has prepared my breakfast, lunch and dinner nearly every weekday for two years.  She has changed my sheets when I was sick TIMES THREE with a cold, the stomach flu and this disease.  She even ventured out to the store at 6 o'clock on a cold, winter morning to buy grape popsicles to rehydrate my pathetic self when the multi-tasking I had done all night on the toilet *ahem* drained me of all moisture.

This weekend I feel the best I have felt in a long, long time.  Perhaps the doctor has found the right combination of medications.  Perhaps my immune system has decided to say "Uncle" and take a breather.  I don't know.  

But I do know that in the last three days this is the list of all I accomplished.  It may not impress you, but it near brings me to tears.

• Saturday
• Took the dogs to the dog park and walked about a mile
• Cooked breakfast
• Showered
• Walked around the Home & Garden show for an hour
• Blew bubbles for my dog to chase
• Ran AN errand
• Sunday
• Took the dogs to the dog park and walked about a mile AGAIN
• Went out for breakfast
• Blew bubbles for my dog to chase
• Monday
• Showered
• Ran FOUR errands
• Wash TWO loads of laundry AND hung it to dry

This may not seem like much, but the fact that I did not nap at all, barely limped when doing all this walking and don't have crushing fatigue, intense joint and muscle pain and crippling brain fog is MONUMENTAL!

I am living with LUPUS, and I fight like a girl...a girl on steroids!

I've done sailed that river.

Lately I've been angry. Angry about work. Angry about finances. Angry about my students' behavior.

But not really.

I've discovered I'm angry at Lupus. Angry that it makes me so tired I have to carefully guard my energy for work. Angry that it makes me afraid I can't do my job. Angry that I don't have the patience for my students' behaviors. Angry that I'm afraid that I won't be able to support myself and Mama Mia if my Lupus gets worse or the house payment increase again. (No I don't have a variable rate mortgage.)

Here's to officially being past the denial stage.

Do you ever feel like a waaaanie?

According to my knees and fingers, I'm headed in to a flare. Since they tend to be the authorities on all things flarish, I choose to believe them.

On top of that, I now have a cough that is an exact replica of the one I had with the kick butt and take names flu I had a few weeks ago that used up the last FIVE sick days I have for this year.

Here is my dilemma. Do I give away my overtime for tomorrow (which we could really use what with medical bills and all) to rest just in case I'm relapsing with the flu? Or do I push through 'cuz I'm being a waaaanie?

Sounds stupid now that it's down on paper 'cuz I know I need to rest, but these are the questions I struggle with as I stumble around searching for my elusive "new normal".

Help me out here, Veterans. This rookie Lupatic needs some reassurance.

Care for a cocktail?

"You have until that glass of water is gone to that pill down, young lady!"

Picture me, tears streaming down my face, hiccuping and trying pitifully to swallow a horse pill the size of a pea all because I had some childhood something or other. I eventually got it down, but that little scene simply represents my ongoing difficulties with meds as a child.

It's a darn good thing I eventually outgrew my overzealous gag reflexes because this little cocktail awaits me every morning, and it's only getting bigger.





Bottoms up!

Cross posted-Rainy Day Diamonds & The Lupatic Fringe

Aware

Ever feel like you are moving in slow motion at light speed? That's been me for the last several months. Time still ticks by in its ever constant rhythm, but my limbs are immersed in a great pool of honey against which they push and pull, fighting to keep up with each day's wants and needs.

Ironically though, I am ever more aware. Aware of each ache or burning sensation or yawn that might portend a flare. Aware that I will have to find my new normal. Aware that normal, whatever that means, will never describe me again. Aware that I will always be on medication. But mostly aware that I have nothing whatsoever to complain about!

Lupus has changed, and will continue to change, my life in many ways, but it has not changed how blessed I am. Even on days that fatigue and discomfort drag at my body and pull on my psyche, I have so much for which to be thankful.

I could list my blessings, numbering them to prove the list is long, but I know my blessings. I soak them in every day as I'm surrounded by family and friends doing work that I love.

Instead, won't you list yours? For yourself and for others like us who live on The Lupatic Fringe.

Are you trying to make me waste my spoons?

There is a plethora of wonderful benefits of living with Lupus.  Not the least of which are the beautiful rosy cheeks and nose, the opportunity to live like everyday is the Kentucky Derby, wearing a hat to keep my tender complexion out of the sun and the chance to jump out of bed each each day at a blistering octogenarian pace complaining of the rhematiz' in my joints.  But the most wonderful benefit of learning to live with Lupus has been adjusting to a fatigue like I've never known before.  I'm telling you I've become a cross between Rip Van Winkle and a teenaged boy. Some days I wake long enough to consume calories, pee and scratch myself before I yawn, "Timber!" and crash with a resounding thump back into my pillow.

I'm learning to take my time with tasks that one took half as much time and guard my energy making sure I don't take on too much.  If I have to run an important errand after school, I plan nothing else knowing I have to reserve some spoons for the next day at school.  Still, by the end of the school week, I am spent.

Oh, and don't you be messing with my spoon supply.  I've found myself quite protective of my energy. If Mama Mia tries to slip in an extra activity I wasn't expecting, I find myself tensing and thinking to myself, "Are you trying to make me waste my spoons!"  If my students want to create unnecessary drama of the "He looked at me!", "She breathed on me!" sort,  my inner voice screams, "STEP AWAY FROM MY SPOONS!"  Both of these scenarios require creativity and communication on my part.  I'm learning to realistic about what I can and can't do.  Learning to be brave enough to both push myself and pace myself.  Learning how to take a breath and redirect my students toward more useful tasks.  And perhaps, most importantly, learning it is okay to admit to myself and others that sometimes...

I just ain't got no spoons left.