Evolving...

Had a ridiculous anxiety moment over the weekend over meeting the doctor again this week.  I take heart in knowing that my reaction is normal.

The basics from the appointment.

One, my Hughes Syndrome tests came back negative!  No more aspirin, if I want.  He said with my family history of heart disease it can't hurt to take an aspirin a day.  We are questioning not taking it, only because several of my muscle symptoms did seem to improve upon taking the aspirin.

The blood says it is NOT Lupus.  No way, no how, he said to close the door on that one.

What he says I do have is low Vitamin D and ''evolving fibromyalgia''.

First, the question of my vitamin D.

It seems my body just doesn't know how to synthesize sunlight anymore.  And unless I consume huge amounts of dairy and fatty fish, the number is not going to rise.  All this California sunshine is a waste on me, how sad!  I was told last November that my vitamin D numbers were fine after the eight weeks of 50,000IUI.  A mere six months later and levels are at a twenty-five!  Last June it was a twenty-seven.  Dr. Reuda explained that the range is thirty-two to sixty-five with the optimum number being a 50.

I was prescribed 2000IUI daily for 6 months.  He wants to see how many of my symptoms go away and which stay.  I pulled the list below off of webmd and don't actually suffer from all of them.

There is no clear pattern of symptoms. In fact many people remain asymptomatic despite low levels. But here are the more common symptoms

• Fatigue
• General muscle pain and weakness
• Muscle cramps
• Joint pain
• Chronic pain
• Weight gain
• High blood pressure
• Restless sleep
• Poor concentration
• Headaches
• Bladder problems
• Constipation or diarrhea

I highlighted the symptoms that bother me the most.  Several other websites and articles name depression and anxiety as well.  I am curious to see if the vitamin D treatment lifts my need for Prozac or makes a reduced prescription level possible.  Rich is against this right now and I'm trying to see it from his point of view.  In order to ensure continue matrimonial harmony we have tabled this discussion for now, to avoid a ridiculous argument over a theory being tested and not proven yet.

The only thing left is to see where the fibromyalgia goes, how it develops.  I have six of the eight trigger points and overlapping symptoms with the vitamin D deficiency.  Dr. Reuda's theory is the symptoms left after six months are the primary or secondary disease we are working with.  Auto-immune disease evolve over time, mine isn't finished with me yet.

I continue to tweak my diet.  No artificial sweetners, no soy, no sodas, no dairy, reduced beef consumption, reducing processed foods, and working on reduced gluten intake.  I have noticed a strong correlation to carbs/processed foods and muscle pain/fatigue.  There is a list of the 52 superfoods on my fridge for reference.  I try to incorporate two superfoods into every meal I eat.  

The last ten months have been running head long at testing, MRI's and the revolving doors of medical offices.  We've gone through testing for the scariest, most complicated diseases to come back to the simplest possible answers.  I've learned to go with the flow, accept my daily life as it is, and wait to see what the future is.

What It Feels Like

Going to preface this with....Not looking for sympathy here, not down about life, just trying to put into words how my world has changed.

Two and a half years ago, I was in a terrible mental state after months of not sleeping, anxiety and a depression that hit so hard I could not function.  I do not hide this, my journey thru that darkness is here on the blog.  All that therapy time with Anne brought my passions and life back into focus.  I could see the future clearly and what I wanted.

That battle was fought and won, then the carpet was pulled out again.  Emotionally, that is how I feel.  

Months of doctors throwing all these complicated diagnosis' and treatment protocol at me.  Me trying to absorb all the information and assimilate how it affects my life as a mom and wife.  I had JUST gotten my life back, my husband had just told a friend ''he'd hadn't seen me this happy in years.''

So I lost my marbles again, because my weakened brain couldn't handle the anxiety and stress.

Most mothers will agree, we envision moments with our children in the future.  The day Nora marries is a hazy picture already forming in my brain.  What she will look like, what I will say, the tears of happiness we will cry.  I can see Trent chatting it up with his father on the back porch like two good friends.  My love for these two is held tightly at the center of my soul.

As a mom you want to do EVERYTHING with your kids. Go, go, go!  Daily adventures to stores, playgrounds, museums, art groups, music, ballet, the beach, etc.

Inside of four months last summer, all of that was changed.  So how do you adjust as a mom?

Well, first you get ticked off!  How do you accept limitations on your life because your body is attacking itself?  Most people get pissed, I know I did.

You slow down, take a step back.  Then you go talk to Anne again.

When I talked to Anne this past fall, our focus was on redefining my roll as mom and what that meant with a chronic illness.  My expectations are and were very high, we had to reset that bar.  First she had to help me process all the changes that were being asked of me....I entered a very recognizable cycle of grief.

Denial.  ''I'm fine.  They have meds for things like this.''

Anger.  Pissed. pissed. pissed.  Don't tell me I CAN'T, I will!  How dare this happen! Let's just say, God and a lot of people came under fire.

Bargaining.  Played a lot of 'IF this...then that'' statements with myself.  If this can just be something that doesn't confine me to a wheelchair, I'll be good with that.  God, you hear me....anything where I still walk, and talk, and paint, and sew, and think, and, and, and....oh, I can't have all of that.

Depression:  Enough said.

Acceptance:  So life is going to look different.  What's the plan?

With every new symptom comes challenge, how does that change my day, how do I work around that or compensate.  What I learned from Anne, with a chronic condition you will go thru the grief cycle over and over and over again as the disease progresses.  There will people that readily accept your illness, those that deny it because they themselves are scared.  Let them be scared, you keep marching forward until they find you again.

Don't every let go of family and friends, you will need them.

The bad days can be, well, bad.  Joints feeling like they will explode, muscle spasms that feel like 9-volt batteries zapping me, stumbling over simple vocabulary and ideas, fatigue and dizzy spells.  My basic BAD day.

On these days, I had to learn to do the minimum so I could do the maximum with the kids.  This might not make sense to some of you.  What is the activity that makes me use the minimum amount of energy or muscle that still gives them the best of me?   I don't like telling my kids, ''mommy can't''.  This disease will not be my excuse.

Bad days. Lay in the yard and blow bubbles. Snuggle the kids in for a book.  Pull something from the freezer for dinner.  Have Nora paint my toes.   Play 'patient' with the kids.  Be a bumpy road for Trent's cars.  Read a book for myself.  Skip a play date.

Good days.  Most days are good days.  Feel the sun on my face. Park with the kids. Go to the YMCA. Make a culinary mess of the kitchen. Fly kiddos on my feet. Play monster. Cover the patio with chalk drawings. Put the kids to bed.

Both days end snuggled up to the hubby, both days are good days sung to a different tune.

Dust Wrangler

Oh, great bagless vacuum cleaner, how you challenge me!?  You are my tornado of cleaning happiness.  Every domestic goddess will profess to having a favored chore, one that they actual get glee from.

For me, it's vacuuming.  The anti-thesis would be laundry, how I loath laundry.

Maybe it's the purr of the machine that I find so calming.  Or the idea that in thirty minutes of my time I have cleaned almost 1800 square feet of living space.  Think about this.  You can spend thirty minutes scrubbing your shower grout and have very little to show for the effort.  A broken nail, hands that smell like Clorox, and a toothbrush formed in the 'splech' formation after being smashed into crevices.

The canister must be filled with debris and dust, kitty furr and dust, dried bits of food and dust.  Did I mention the dust here in California?  A veritable dirt devil blows in my open windows about every three days.  It's a catch twenty two living out here on the edge of the desert and mountains.  Great weather equals shutters thrown open to the sun and breeze.  Eh....Georgia had it's pollen too I guess.

Is it just me or is the vortex of yuck being suctioned up just mesmerizing?   I vacillate between feeling victorious over the grime and disgusted that it fills my lungs.  Granted, I'm not just picking up dust.

There is the occasional Barbie shoe or light bright that finds itself getting a vacuum swirly.  I've long past the point of caring to extract these items.  Just like a pretzel, so dies the Lego that stabbed me in the foot at midnight.  The Lego was asking for it.

The kids know mommy is on a mission when I turn the machine one.  The living room will be cleared like a tornado ripping through the prairie.  Declarations of 'move it or mommy sucks it up'' are made as a warning before everything is wisked away to the Land of Fuzz and Dust.

I am ruthless, even Nora's Strawberry Shortcake swimsuit met it's demise when the brush snared a strap and shredded it.  The suit had to die as a warning.

Nothing motivates kids to clean better than recalling the wreckage of toys.

If only I could find a way to intimidate dust.

Doctor......

I returned to the neurologist after two months.

Trent was with me for the return visit.  I prayed better behavior would happen this time.  Two months ago my kids terrorized exam room in a monkey-like madness sure to convince anyone of the usefullness of birth control.

The nurses were charmed by race car noises from the waiting room.  Francesco and Lightening McQueen sped across every piece of furniture, crashing into fake plants and chair legs.  The cars were tailed by a child full of giggles and animated noises.

When it was time to go back to the exam room McQueen found the power to fly invigorating until his cohort stumbled and found linoleum.  With cat-like reflexes both owner and car gained their feet quickly. The nurse was once again amused, mommy was praying that was the last of the drama.

Have I mentioned how much I like doctors out here?  Dr. Alahi walked in RIGHT on time at 10:30am!

He had received some of my blood work from the neuro in Georgia and had reviewed my MRI imaging from last summer.  The concensus is no MS, most possible diagnosis is fibromyalgia with a hefty side of Hughes disease to round things out.  Lupus is a vague, dimming worry at this point.

We discussed the potential of 'fibro-fog' and my definite need for 8+ hrs of sleep per night.  Lack of rest only makes the fog worse.  Dr. Alahi played some memory games with me to test a few things out.  He would like to run another MRI to check for hyperintesity advancement or new spots.  An EEG is needed to test electrical impulse strength throughout my brain.  My understanding is that baselines are being set to track progression of the disease from every angle.

Meanwhile, in Trents' world he got to entertain the student doctor from UC Irvine.  Fascinating him with his knowledge of colors, shapes, planes, trains and potty training.  Oh yes, he went there!  The mommy ears caught the cherub voice say, ''In the potty, I go BiiiiiiiiG pee pees.  Is yuuuuck yuucky.''  It could be worse, he could have demonstrated for them, right?

Dr. Alahi stopped asking ME questions to verify what he had just heard.  Yep, yep you heard him.  I apologized and explained that we are newly potty trained and enamored with our bodily functions.

At that, we all declared it time to go before anymore excitement happened.

I don't want....

We've entered another phase with Trent.  He's starting to express things that make him mad, happy, or confusing us with contradictory statements.

''I don't want cheesy noodles, I want FOOD!''  This statement happens a lot.  Apparently, the category of food is subject to interpretation.  

He was asking me what my eyebrows and eyelashes were at bedtime.  When I made him feel his own eyelashes he went nuts, '''EHHHHHHH!   I don't want eyelashes!!!  Take them off!''

The hubby was presented with this confusing statement at breakfast, ''I don't want that bagel, I didn't get it''  Interpretation, he didn't pick the bagel out himself and therefore, it is inferior and not worthy of being eaten.

Continue that into the epic ridiculousness of toddler logic, ''I don't want Nora to go out my door.  No!  NO Nora!  No use my door!''  Trent melted down, like on the garage floor choking sobs because sister got out his car door.  I can't even come up with something rational to calm him down.  One of those moments when I just shook my head, walked away and let him get over his irrational argument. 

There are times when the ''I don't wants'' are purely fueled by exhaustion.  ''Mommy, I don't want to go night night, I want a nap.''   Ok.  He can call it a nap, but it better last at least 10 hrs.

Time seems to confuse him.  We will tell him, Trent '5 minutes then we go home.'  We often get the response, ''I don't want to go yet.  No not yet, two minutes ok?''  Once again, this toddler logic works to our advantage.  We know one day he will be smart enough to know better.

Doctors....when they finally listen

I am blissed out.

The doctors here in California LISTEN to patients.  And take time to really ask questions.

I met with, Dr. Castro, my new Rheumie.

His opinion, most likely fibromyalgia with a smidge of lupus on the side or no lupus at all.  The Hughes Syndrome is there also complicating things.

He's redoing all my blood work from six months ago.  He wants a fresh look at all the numbers, he's sending the blood to a lab specialized in rheumatic disorders.  Read: they KNOW what they are looking for.

Other things being run.....thyroid, Vit. D, B6 and B12 panels.  All of these were low, but no one in Georgia was paying attention to them, saying they weren't low enough.  Dr. Castro pointed out that low for one person is different than another.

The treatment plan for now.  Keep taking aspirin a day.  Keep moving!  Keep eating healthy.  Rest when you are tired.   Rest at night.

The best part was this statement, ''Fibromyalgia IS a disease, no matter what you read.''  There are a lot of articles and insurance plans trying to discredit this diagnosis as made up.  Glad to hear that the doctor is on my side.