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Wednesday, September 29, 2010

A Dimmed Vim

I'm starting to resent the restriction of my super powers.  Seriously. I use to be able to leap buildings in a single bound, flying around at the speed of sound AND deflecting bullets with a single glare.


Now, I'm lucky if I can get through the front door at work.  Okay.  I can  get to work and get through the day, but my vim is seriously dimmed and my vigor is that of a flat basketball.  I'm used to going full steam ahead.  I'm still trying.  But about mid afternoon I have some serious brain haze.  It's a good thing that I tend to write everything down at work or I'd never get anything done.

Supposedly the plaquenil will make a difference when it kicks in.  But that will be months from now.

So I'm hanging on the ledge of the building I couldn't quite leap over by the tips of my fingers praying for a) the strength to pull myself up OR b) a kind stranger or friend to see my predicament and pull me to safety.

It's a terrible thing when a superhero loses her vim.

Monday, September 27, 2010

I'm Annoyed

I am NOT a happy camper.  I have weird spots erupting around my body. This last week, my legs have been itching.  Like I had a bunch of ants running up and down them.  My left leg in particular.  Then, I went to Bark in the Park on Saturday (I'm involved in dog rescue so I kinda had to, but I had the hat, sunscreen etc.) and I just ended up feeling really crappy when I came home. My face a glorious fushia.

I woke up Saturday morning with a discoid blemish 1/2" wide on my upper inner thigh. Let me tell you.  That was alarming.  It was surrounded by smaller raised pink bumps.  It's not sensitive, just really ugly.

Then that afternoon, I found a raised blemish on my face.  Along my cheek bone.  I'm keeping a photo journal of the blemishes.  That way I can show my doctor when I see him next.

I'm frustrated and annoyed.

I'll get my fight back tomorrow.

Sunday, September 26, 2010

Faith & God

I've never been one to cry 'Why me God?!?!?' in the face adversity or difficulty.  I firmly do not believe that God sits down an decides to afflict me with an illness, a trial or a circumstance.  I believe that God is bound by the natural laws that bind the Universe and must therefore work within that frame work.  Illness comes out of the environment, genetics, or stressors in our lives.  Most things we view as trials are the result of choices we have made (good or poor).  Sometimes both happen due to circumstances completely out of our control because of the choices of other people.  How we live with the circumstances will be our legacy.

So I really have no patience for people who get mad at God because of their circumstances.  Please note, despite being at the beginning of my diagnosis of Lupus I've been struggling with the symptoms for quite awhile.  I've had other struggles as well.  I won't judge your struggles or your path, but I will tell you to suck it up and move forward if you start playing the poor pity me card.

You see, I firmly believe that despite the circumstance I find myself in God has not deserted me.  He has not turned his back on me and asked me to walk this path alone.  Instead, he had provided me with friends, family, doctors, nurses and other forms of support on this journey.

My job, if you will, is to reach out and open the door to this well spring of support.

God and His Son are always walking the path with us.  We have to be the ones to open our eyes to their presence.  If our eyes, minds and hearts are shut to all the opportunities of love, friendship and support available out their for us, that's on us.

I want to be able to be defined by my life, not by my illness.  So, when others cry, 'Why God? Why me?' I'm going to be living my life to the fullest extent.  Knowing that I am not alone.

Saturday, September 25, 2010

Attitude! I've Got it!


Never let it be said that I don't have an attitude.  I grew up with the attitude that I wasn't sick or incapacitated unless there was blood gushing, temperatures busting triple digits with hallucinations, or body parts missing.

Just feeling a mind numbingly crappy with a miserable headache is a walk in the park.  Okay, a dark, scary, thug infested, keep your personal belongings hidden for your safety, without any type of lighting kind of park.

So, I act confident, move forward and carry on.  Swinging my scepter of attitude like a scythe in front of me to clear my path.

How's it working for me so far?  Swimmingly!  No body parts missing. No blood gushing. And, no triple digit hallucinating inducing fevers as of yet.

I seriously need a nap.

Thursday, September 23, 2010

Burying my Head in the Sand

Telling people outside my family about my Lupus has been a lot easier than figuring out how to tell the siblings about it.  I know that my friends will support me 100%.  I can trust them to be their for me through thick and thin.

They've never looked at me and said, "I just don't understand why you don't take better care of yourself."  Like Lupus gives you a choice.  You can be doing everything right.  Eating right, exercising, but this is a disease where the immune system futzes out and rebels.  In the computer world, we'd say a gremlin was in the hardware.

I love my family. I've discussed this with my mother.  She's processing this.  My father passed away from an unrelated terminal illness.  This is not something she wants to deal with.  I can't blame her. But part of me does.  She's my mother and I want her to listen.  So, if she's not listening, I'm pretty sure that the sibs won't react well either.

I'll tell them eventually, but the approach will be tough.  There is no easy way to do it.  I'm laying to the ground work.  Putting Lupus support information on the blogs I write that I know they read, on my Facebook page.

I know that in their own way they love me and don't want anything to be wrong with me.  I've seen them drowning in the depths of their denial.  Frankly, I'm not sure that I have the energy to deal with their fear.

Yes, I'm being passive aggressive about this.  I haven't fully processed this myself.

I'm going to go back to being an ostrich.

Tuesday, September 21, 2010

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.

Monday, September 20, 2010

Emotional vs. Intellectual

I feel jittery and compelled to get stuff done, even though I know that I'm pushing my limits.  Its almost an obsessive compulsive desire to get certain things done before I can't do them anymore.  I think in the back of my head, that is the fear I have niggling around.  That I'm going to become disabled.  Not being able to work, to provide for myself is a HUGE fear.

I don't think that I've actually acknowledged this.  What would I be if I couldn't work?  That's the rub, I'd still be me. Not more, not less, just with a different set of circumstances.  This is an intellectual realization that has to filter down to my emotional self.

That is really what this is boiling down to.  The reconciliation between my intellectual and emotional side about this disease.  Intellectually I know that ways exist to manage it and cope.  Emotionally, I want to curl up in a corner with my fingers in my ears singing lalalalalala.

I don't want to be sick.  I have shades of my father's illness, which I know has no comparison, who died from his disease.  I feel resentful that my body has crapped out on me.  A part of me is very angry.  And I have no one to blame.  That is the very essence of frustration.

So, I write.  I put form to my fears, dreams, hopes, and expectations.  Hoping this will clear out the stuff that will stymie me so that I can get on with my fight.

Ultimately, I intend to go down swinging.  Having lived a full life.  With lupus as a footnote, not having defined my life.

Saturday, September 18, 2010

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.

Friday, September 17, 2010

Stress and Food

I'm going to admit that I'm a stress eater.  When I hurt, I want my comfort food.  Now that doesn't necessarily mean a lot of rich food, but I like my carbohydrate.  But now that I'm seeing a lupus connection between what I eat and how I feel, well I'm finding that my stress eating is going to have to change.

The funny thing is, I really don't go for all the sweet stuff. Don't get me wrong I like a really good piece of good chocolate.  But I don't need a lot of it.  In fact, I'm pretty limited in my sweets.

I tend to crave the savory.  That's what gets me in trouble.  The savory part of my palate is what I like to stimulate.  I'll take a really good piece of bread (not store bought white sandwich bread, the the yummy artisan bread) with a bit of butter and/or dipping oil over a sweet any day.  I could nosh that down in a heart beat.

But I find that I tend to get sluggish.  The brain fog gets bad.

Foods that keep me on task are the simple foods.  Lean proteins, fruits, vegetables, simple carbohydrates.  I can do complex carbohydrates in moderation.  I just have to really watch my intake with them.

I'm not going to give up my chocolate! That's all I'm saying.

Wednesday, September 15, 2010

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.

Monday, September 13, 2010

Fighting Fatigue

I find the fatigue part of the lupus to be overwhelming.  Just being tired is depressing.  Especially when I know that I should be more alert, energetic and productive.  I have this list in my brain I need to tick off.  If I don't at least touch parts of the listed items, I feel crappy.  That sounds a bit OCD doesn't it.

Part of the reason I write is to clear my head of all the stuff I have in there.  That includes stories, opinions, irritations, random thoughts, etc.  When I don't get a chance to express any of it, because I'm too fatigued for example, I get into a pretty serious funk that feeds on itself.  Those funks are dangerous.  They can send me into an ever downward spiral that ultimately does irreparable harm.

Now I have to identify my most productive times, and schedule myself to them.  I can definitely tell you I am NOT a night owl.  I am so tired of people and just life in general after work that I want to be left alone.  That very rarely ever happens.

I'm tired of being tired.  But it's part of the issues.  As I work through what works and doesn't, I understand that the fatigue might get better, or I'll be able to manage it better.

I watch my nieces and nephews zoom around and wonder if I can borrow a little of their energy for a little while.  They seem to have an overabundance of it.

Saturday, September 11, 2010

Brain Farts

I'd been worried over the last 6 or so months about these unexplainable moments of blank that would happen.  My brain would just freeze, or blank, or I would lose words (not so good if you are a writer).

On of the symptoms of lupus is cognitive haze.  That explains a lot.  It means that I am a normal crazy. Not an abnormal crazy.

I can live with that.

Friday, September 10, 2010

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.

Thursday, September 9, 2010

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.

Wednesday, September 8, 2010

Information Overload

Having a label to all the oddball symptoms I've been having helps.  Having a mother who has now made it her project to find out all the ins and out of Lupus and all the medical ramifications of all the treatments, is going to send me over the edge.

Seriously.

I know that she loves me and wants me to be 'fixed' and healthy.  That is the role of a mother.  But 'fixing me' is something she can't do.

This is where I seriously have a hate/hate relationship with the internet.

Tuesday, September 7, 2010

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.

Monday, September 6, 2010

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?

Saturday, September 4, 2010

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.