Oh Me, Oh My..

I find this journey I am on fascinating and frustrating.  That's right my life has turned into an oxymoron.

I still struggle with exhaustion, which drives me around the bend.  The irony is that caffeine just makes it worse, so I'm working on a balanced diet (I miss Diet Dr. Pepper). I feel like Lupus is turning me into a old woman.  I AM NOT OLD!

And, I still am dealing with headaches, though they are now a dull roar instead of stabbing pain.

The body is still achy and unhappy.

Have I whined enough?

The good news is I am forced to manage my time and interests with an iron fist.  Saying 'no' tactfully has become an art form in my personal and work life.

Would I be this organized if I didn't have Lupus?  Maybe a little less driven, but determined to make my goals.

All I know is that my reality has shifted and I'm learning how to deal with it.

Domino Effect

A week ago, I was involved in a car accident.  Aside from some muscular issues, I came out of it okay AND my car can be fixed. I can not tell you how lucky I was.  It could have been so much  I'm now feeling about 90% back to normal.  

The good news is no one was seriously hurt AND they can fix my car.  

Why do I tell you all this?  It would seem that my Lupus wanted to get into the act.  Apparently, it was feeling neglected. sigh.

Really?  

I understand that I experienced a traumatic event, but couldn't the flare I'm experiencing coincide with the days I felt crappy from the accident?  Of course not.  I'm achy joints, experiencing headaches and my fatigue level has gone up a notch.  

Don't get me wrong, I am filled with Gratitude.  The entire experience could have been so much worse.  I just wish my body would get its act together.

Paying the Piper

I'd say that the last few months have been easy, without incident and happy.

I'd be lying.

I've accomplished a lot.  If you couldn't tell, I write.  I have a number of blogs AND I've finished a manuscript for my first novel and am seeking representation AND I work full-time AND see to the welfare of my senior parent AND trying to maintain a balance.

I'll be the first to admit I've dropped a few balls along the way.  My body rebelled.  I pushed to far and paid the price.

Here is the hard part.  I still don't 'look sick' according to people who are around me.  How do I explain to them looking sick has nothing to do with the body aches, the headaches, joint pain and debilitating exhaustion.  And let's not forget weird rashes.  And my particular favorite, my particular blessing,  reoccurring shingles.

I find ways to soldier through it all. I have to.  I rest when and where I can.  The rub is, only I can pay my bills, put food on my table and kibble in my dog's bowl.

I'm living on a deferred payment plan and if I am not careful, the bill will come due in full.

Hole in my Head

I need a headache/migraine like a hole in my head.  Yet, I have had a nasty miasma of pain that has pinged around my head like the silver ball on a pin ball machine.  The worse part is I'm on permanent TILT.

Combine the headache with the achy joints and I really want to hibernate, wait for spring and hope that things will improve.  Knowing my luck, I'd come out of the hibernation a nasty tempered bear.

Doctor's appointment in two weeks.  We'll see what Dr. S says.

I'm Sore Again

I'm having trouble figuring out what constitutes a flare in my Lupus experience.  My one constant exhibitor in this journey has been the over all achiness and fatigue. In the last few weeks, my hands, joints and muscles are back to letting me know the are not amused with their current predicament.

I can't even blame it on any New Year's resolution gone bad.

On top of that, I'm finding that at night I'm experiencing numbness on the side which I sleep. I know it could be from sleeping to long on one side. Here's the kicker. I'm a restless sleeper. I toss and turn all night long.  Even when I turn the numbness takes awhile to abate. I have to lay flat on my back, which is annoying as a side sleeper.

Next doctor's appointment is in three weeks.  I'm documenting.  I just don't know how to describe everything. How do determine what's important and what's not.

I'm worried about being a whiner.  I'm worried that I'll miss something important.

I'm worried.

Smelly Things

I'm currently the victim of chemical warfare in my office building.

A catastrophe happened over the weekend, where the kitchenette flooded. The maintenance people sucked up all the water, then put on a fan to 'dry' the carpeting.  Then today, some enterprising cleaning person decided the damp carpet looked dirty and sprayed the most noxious carpet cleaner on the floor in the middle of the work day, with the fan pointed out into the hallway spreading the fumes into the entire office space.

Yes, my head is splitting. I can't eat and I'm currently in an email battle with the dimwits at corporate facilities and the building maintenance. I haven't puked yet - only because the mere thought of food sends me into a panic so there is nothing there.

As I tried to explain to the chemically brain-rotted maintenance person, as he started to add a layer of aerosol fragrance to the already nasty chemical stew floating in the air, that he was making people in the area sick -  I was told that he felt fine and that I didn't know what I was talking about.

I felt that projectile vomiting, while it would have made my point, was beneath me.

This afternoon, the smell of the chemicals has dissipated, but the damage is done.  I know that the next couple of days may turn into a complete cluster, courtesy of the nincompoops here at work.  I can only hope that when I get into the fresh air some of the headache will go away.

If not, someone is going to pay for my missed work.  It won't come out of my vacation.

Headache, Headache Go AWAY!

When I first got diagnosed, I went on a research binge.  You know, make a list of all my aches and pains and see if I could sync them up with a corresponding Lupus symptom.  It almost became an obsession.  My mother, bless her heart, just looked up symptoms to warn me of my impending doom.  So, I had to put my foot down and say only one person was allowed to obsesses about my illness - ME!

Back to my headaches. I'd been suffering from headaches that ranged from annoying to disabling most of my adult life.  Good days have always been a dull throb.  Bad days - lightening bolts ricocheting around my head and flying out my eyeballs.  Over time, I just learned to live with it.

Learning to live with the constant pain has upped my ability to tolerate pain, which had its benefits. But the reality is, I think it just delayed my diagnosis.  After all, if I can function it's not so bad.  (yes, you can smack me on the back of the head, J)

Imagine to my surprise, part of the Lupus universe of symptoms was the 'Lupus Headache'.  Yeah!  That meant, that on top of my body being sore and aggravated. The constant headaches were not really stress related.

So, that was the good news.  The bad news is that the research is fairly non-conclusive on cause or over all treatment.  A common theme is to work on reducing over all stress (just say 'NO'), work on eating healthy, increase your exercise as you are able.  

I'd like to emphasis exercising as you are able.  Yes, I know that increased exercise is overall beneficial, but when you've worked a full day, taken care of your basic maintenance items and then add exercise in the mix -  all I can say is be realistic.  Don't plan for a marathon, take a small step at a time.

I'm not planning on my headaches to miraculously to go away.  I've lived with them for so long, and done so many things despite their impact on me.  But I hope that one day, one day I'll be free of them.

"Looking Sick"

I'm finding it challenging to have to defend how I feel when I don't 'Look Sick'.

What does that mean, looking sick?  Do I need to be breaking out into pink polka dots and zebra stripes? Seriously?

The truth about this disease is that sometimes it simply does not manifest itself in physical signs that can be readily identified.  Sometimes it does.  Do I have the 'butterfly'? Yes, but I've had that for years.  I always chalked that up to a ruddy complexion, so it's considered a normal part of me.  I'm fortunate not to have the discoid blemishes.

I just feel fatigued. I wake up exhausted. I hurt.  My joints ache, I have weird pains in my muscles.  My head hurts.  None of this is particularly new, just worse than it has been in years past.  All of this is hard to quantify.  Without gushing blood, open wounds, projectile vomiting or spiking fevers, there is nothing for someone outside my body to see.

When I'm trying to convey to my aged mother how I'm feeling, it becomes a oneupmanship - who's feeling crappier.  Apparently, I'm taking attention away from her.  She won't acknowledge that I could be having a bad day.  After all I'm functioning.

Well I've been 'functioning' for a long time.  I have to.  Who else is going to pay my bills, take care of my dog and do the things that are necessary.

I have a high tolerance for pain and discomfort.  Because, I've never put myself first. Well all of this changes.  I'm starting to get really angry.  My health, how I'm feeling, this disease is not a competition.  IT'S MY FREAKING REALITY!!!!!!

How dare it be minimize it because of fear.  I respect her fear, but I can't condone her diminishment of what I'm going through because she can't deal with is.  I am not looking for sympathy.  Frankly, I'm not looking for special circumstances.  I just want to be able to refuse an invitation or say 'I'm not up to going out today.' without getting a guilt trip.  Or without the most condescending of phrases, 'You don't look sick.'

I'm even angry at myself for allowing myself to play second fiddle.  I'm important.  My needs have to come first.  This is not being 'selfish', this is about me being healthy.

It's Not just in my Head!

All my life, or since I was a teenager I've had headaches.  No one could explain them. I had one male doctor (who was an a$$), who had the gall to tell me I was a mere woman and it was just a female thing.  His answer obviously was unsatisfactory!  I reported him to the local medical board.

Each doctor labeled it as stressed induced migraines, or just migraines.  'You need to have less stress in your life.' 'Work a job with less stress.' Have been common refrains that I have heard.

First of all.  I'm single.  I am the sole bread winner.  If I don't work, there is nobody to put food on my table or kibble in my dog's bowl.  Who are they to tell me to work a less stressful job?  Who are they to tell me to relax?  When they, the doctor's, are clearly not following their own advice?  (Have you seen a doctor after a full day of appointments in an HMO practice?)

I'm not saying that there is not a grain of truth in what they are saying.  Managing my stress is important.  But telling someone to turn their back on their livelihood is just plain irresponsible.

Back to my original topic, my headaches.

I've lived with these headaches for a good portion of my life. It hasn't been easy.  The Topamax really hasn't done much, at least that I can tell.  Imitrex does nothing, the only thing that dulls it is midrin during the day and firocet with codiene at night when it is really bad.  And I'm really careful about taking it.

As I'm researching lupus, I'm finding that headaches seem to be part and parcel of this new reality I find myself in.  So, I it makes me wonder if I have been dealing with this disease a lot longer than I ever thought.

The headaches are part of the package, I'll do what I've always done. I'll carry on.  I'm working on managing my time, stress and work loads. I'm saying 'no' more often, and not making excuses about it.  I'm resting when I need to.  I've lived with the headaches this long, I can continue to do so.

The label of Lupus is just that. Thing haven't changed really.  It's been two weeks since I've started the Plaquenil and I'm not noticing a lot of difference.  Just the vicious over all body ache of last summer seems to have abated.  Now its back to the headaches and the new and improved joint pain.

Education is the key to the management of this new twist in my life.

Limits - meh

So I felt good today.  Just some joint pain, I could deal with that.  Time to tackle things I've been putting off for a while.  Decluttering, moving furniture, going through my piling system of files, that type of things.  I started strong, got 85% of my tasks done, then realized as I bent over to remove the last bag of broken down stuff... my body WAS NOT HAPPY!

I had done way to much.

Well, crap.

I'm really beginning to get annoyed with this inconvenient disease.  I've always been a 'If I can think it I can do it' kind of person.  Now I have to adjust my circumstances.

I know.  That is the reality of this illness. I have to learn and stick to my limits.  Not allow anyone, including myself, to push me beyond them.

sigh.

Some Days You're Up...

Some days you're down.

So today is a not so good day.  The last couple of nights I've not slept very well.  The brain wouldn't shut down, so it kept circling around the strangest of things.

I'm tired, sore, headachey, really wanting a nap.  The day isn't even over and I have to much too do.  Sigh.

The good news is that the vicious over all body ache I was suffering from seems to have abated.  That really was a drag after the first week.  After 6 months of it, well, sleeping on a bed of nails would have been a nice distraction.

Patience is NOT my Virtue

Today I am not particularly patient.  I'm being good, taking my medicine.  Finding time to exercise (which hurts and I'm too tired to do it BUT it is suppose to make all this better in the long run) and working on making my diet better.

I WANT INSTANT RESULTS!!!!! I want it now!  NOW I tell you!  I want to feel better NOW!

I know that this is where I put everything in God's hands, having faith that all will work out.  And I have faith.  I really do.

But it doesn't stop that nasty little impatient natural (wo)man part of me screaming at the top of my lungs - I WANT TO BE FIXED!  I don't want to be sick.

So, in my theme of the NOW.  I have faith that I can get through the NOW to get to my future.  I will have a future that will be better managed healthwise than the NOW because I'm learning NOW how to deal with the illness that has just been identified.

More importantly, nothing is instantaneous.  I have time.  We all do.  It's what I do with the time that is important.

In Comparison

Somebody is always going to have it better or worse than me. That is just the way it is.  I think that how one handles the travails of life is the indicator of the person you truly are.

That being said, I'm not above the occasional whinge or the (hopefully) more common huzzah!  But I've learned not to compare.  If I compare my aches and pains, my haves and have nots, I would find myself in an endless cycle that would suck me into a bottomless pit of despair.

So I choose to focus on the now.  If I hurt - okay.  I acknowledge and move on.  If I'm happy - I celebrate.

I had a friend ask me after I first received my diagnosis, 'what would happen if I did nothing?' I realized I was more than a little offended by the question.  I know that she really didn't mean the question to be offensive and she doesn't understand the disease or the situation. But in my mind, you never roll over and do 'nothing' if options are available.

I have plenty of options.  I'm not saying that my path will be easy or pain free, but 'in comparison' to those who choose to roll over and be dead before they truly die, my world is so much better and vibrant than theirs.

Test Results are in...

Wow!  I didn't have to call the doctor's office.  They called me bright and early this morning with the results.  The indicators for Lupus are moderate to weak but there.  So I'm catching all this early. Which in my book is good.  But the pain indicators have risen substantially.  Go Pain!


So, we are on to the plan that Dr. S and I have discussed.  I get to try Plaquenil.  And see him in 6 weeks.  (of course being the popular man that Dr. S is, his first available appointment isn't until the week of Thanksgiving, but his office staff has put me on the cancellation list to move my appointment up.)  I also have to get an appointment with an ophthalmologist to get a baseline on my eyes. Plaquenil has several possible side effects (blurred vision, seeing light flashes/streaks/halos, missing/blacked-out areas of vision) and I want to make sure that I'm on top of this.  I like to see.


Honestly, I'm a bit numb about all of this.  This is a game changer in my life.  This resorts my priorities. 


My personal priorities haven't been bad or wrong, I just have to focus my lens.  Sharpen the vision.  Give myself the clarity.  


As I travel this Wheel called life, the one thing I know is that I'm not alone.  What ever is handed me I can take as long as I have my faith, family, and friends.

Sleep is an Elusive Dream

For the last year, my sleep pattern has degraded.  Now that things are coming into focus I can see a pattern, but it's been harder and harder for me to get a full nights sleep.  

Trust me, if I don't get my minimum required amount of sleep... it ain't pretty.  

Part of the problem is that I sleep on my side.  Which puts pressure on my joints.  Which doesn't let me sleep in one position for very long.  I sleep lightly anyway, so when I end up flipping my self over I wake up enough to disrupt my sleep patterns.  

All of this turns on my brain which never really turns off anyway.  Then I spiral into a vortex of thoughts about any given project I'm working on and the night is shot.

Did I mention that life is not worth living for those around me if I haven't gotten my minimum amount of sleep?

Ache, Ache, Go Away!

Really, go away!  The last couple of months the over all achiness has gotten worse. It makes me want to just do nothing.

It's putting a cramp in my plans for world domination.  I have things to do and I don't want to work through pain to do it.  Of course I could be a cranky world dominator.  But I'd rather rule the world with my sunny personality.

Time to go find the Aleve.

Next week I get the test results.