Two Halves Become Whole

I have to admit that I'm not doing so well at the Work/Life balance thing.  Really, honestly it has to do with a deep seated fear that if I slow down, I'll end up stalling.

I know that fear is irrational.  But it is valid.  I feel myself slowing down.  I resent needing to slow down.  I've always been the one juggling a ton of things and getting them done. While it is a cold comfort that I have a reason that my brain fogs out when I do too many things, I just get irritated with this limitation.

Okay, yes I'm pitching a bit of a hissy fit.  If the visual of me kicking my heels on the floor and banging my fists in time with my feet like a three year old helps the visual, enjoy.

So, you've heard from the irrational, scared, angry part of me.  The more accepting, zen part of me is doing her best to pick up the toddler self and calm her down.  Letting her know that in the end it will all be okay.  That the limitations are just something to be worked around, over, under, and through.  It's okay to be upset by the changes.  The cold hard reality check is that there is absolutely nothing I can do to change my circumstances.

Instead of whinging about it, the rational part of me tells me to let things go.  I don't have to do everything I want to do at once.  At work, I can slow down.  I NEED to slow down.  The people with whom I've work with, who know me and trust me, will work with me in my new circumstances.  It's me that has to be okay.

Yes, I give myself permission to be slower and feel like crap while I'm getting the stuff done that must get done.

I'll celebrate the good days and be grateful for everyday that I have.

As my rational self soothes my fearful toddler self.  The two will merge to become a stronger person able to still make the leaps of faith needed to live with gusto and have the serenity to step back as circumstances dictate.

'Tis the season .... For the Plague!

Sneezing, coughing, sniffing can be heard across the floor at work.  In elevators, I waiting for that stranger to sneeze without covering their mouth, exposing everyone to their icky germs.  Seriously, what DID their parents teach them as a child.

I've never been a particular germaphobe, but I do know that I have been more susceptible over the last several years to the bug du jour.

As a kid, even a young adult I had a really strong immune system.  I could pretty much survive anything. I only recall getting the real flu once in college. Trust me projectile vomiting in the middle of the sidewalk because I wasn't going to let no stinkin' bug keep me from my mid-terms was a memorable moment in my life.

Now when someone sneezes in my direction, I throw hand sanitizer at them, followed by tissues and a threat of violence if they come any closer (I feel that any jury would find in my favor if it got that far). I'm considering wearing a mask for the next 6 months out in public.  People would avoid me then! :)

That brings me to today.  The annual Flu Shot extravaganza.  I didn't use to get them.  Frankly, the years I got them I seemed to get the flu more often.  Now?  I get them every year.  I usually have a little reaction to them but the end result outweighs the initial inconvenience.

The Lupus Foundation of America recommends the Flu vaccination as well as the Pneumonia vaccination due to the suppressed immune system issues of the Lupus patient.  The key is that the vaccination can not have 'live virus'.  The nasal spray vaccination has this.  So a shot is necessary.

So many people come to work sick.  I'm much more aware of the impact of one cough, sneeze or runny nose.  I can't be responsible for bringing the plague to work. Frankly, I expect the same responsible behavior from the people I work with.

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.

Moments of Celebration

Yesterday was National Pit Bull Awareness Day.  I celebrated by hanging out with an amazing group of Pit Bulls and their owners for most of the day.  Quizz, my amazing side-kick, participated in two classes then, by the trainer's recommendation, went for his AKC Canine Good Citizen Certification.  He passed with flying colors!  I'm such a proud mama!

That's right, I'm CGC Certified!  Woot!

It was a long, fabulous, busy day. How could I not love hanging out in a place with such amazing energy?

The problem is that I'm so paying for it.  I knew that I'd be paying for it when we finally got home.  I'd been on my feet for almost 8 hours straight, by the end of the day my joints were starting to get really sore.

This is the conundrum I'm finding with life with Lupus.  There are things that are important to me. Things help define who I am.  Too not do them, then what's the point. I'm not going to admit defeat.

I will have my moments of celebration.  My moments of achievement.  These are the things that define a life.

My Dazzling Hire Wire Act

To be honest, I'm feeling a bit like a performer of a high wire act.  Everyone is oooing and ahhing over the performance of the bravery it takes to walk the wire, but no one really wants know what it takes to learn how to do it.

I've got really good friends that let me babble out my frustrations.  I can't begin to express how priceless that is.  They are my team that helps prep the equipment and costumes. Making sure everything is safety checked, all the sequins and sparkly doo-dads are in place.  More importantly, they are there with my safety net in case of catastrophic failure.

The ironic thing is that while I'm getting use to all the things that Lupus means, I'm experiencing this amazing creative renaissance.  I feel compelled to document my journey.  Write my stories.  Essentially run my various races as I can.  I know that I'm limited, but I'm working within those limits.  

If I find my way blocked, I'll find another way over, under, around or through.  There is always numerous ways to get the job done.

As I walk the wire, placing one foot in front of the others, dazzling the crowd with my balance and grace.  I know that I have a safety net for which I'm very grateful for.

Open Enrollment Circus

The Open Enrollment Circus has started again at work.  I always pay attention, but this year I'm paying particular attention.  I now know why I'm feeling like crap.  I now have to predict the future and guess what my health costs are going to be.

On top of that, my company has narrowed down our options to an expensive PPO with an FSA or a 'Premier Choice' with HSA option that is half the cost.

I have no idea what my costs are going to be.  I have to prepare for the worst.  In the Premier Choice, I have to pay for everything up front until I meet the $1500 deductible, but everything (doctor visits, prescriptions, dentist, labs, x-rays, etc.) everything goes toward it.  I'm pretty sure I could rack that up in a heart beat.  But, then there is the cash flow problem.  While the company is giving me 'seed' money to get me started, I'm terrified that it's all going to go wrong in a short amount of time.

Or, I can stick with the plan that I currently plan and be nickeled and dimed to death with hidden costs.  I'm so frustrated.

Oh, and let's not forget the governments contribution to all this.  They've sold us out to the pharmaceutical companies.  Soon, I'm sure the insurance companies will be 'XYZ insurance sponsored by ABC pharmaceuticals'.  The government is supposed to be doing things for the good of the people, NOT for the good of their own pockets.

I just need a chair and a whip to fight my way through this morass.

"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.

Family

I did the auntie thing this weekend and watched my brother's kids with my mom, so he and his wife could get away for a well deserved break.  This was definitely a tag team effort as a lively group that ranged from 10 (almost 11) to 18 months.  They were all great.  Really.

The 18 month old was a trooper with his little cute put-put-put and sheer charisma, his sisters all helped wrangle him.  Even the dog helped keep him entertained.

I quickly realized how tired I was by the time Sunday arrived.  I can't imagine how parents with Lupus handle their family lives.  I'm single, no children, just my fur-child. And I'm wiped out.

Would I trade the experience?  Absolutely not. Am I going to be paying for it. Absolutely.

I pushed myself to hard. My mom fell victim to a 24 hour bug, so I was the responsible adult.

I DO know that sometimes you just have to get things done.  This was one of those cases.  Will I have to do it again?  Maybe.  I'll be better prepared next time.

Defined by my Substance

'Death is at your door step and it will steal your innocence, but it will not steal your substance.'

 Mumford & Sons - Timshel

As I work through everything in my head (there is a lot of stuff in my head), I can't help but think about the frailties and limits of this life.  But at the same time, I'm in complete awe of the human will to move forward and survive.

All this sounds really contemplative.  What I'm really saying is that I want to be defined by my choices and the people who I know and who know me along my journey.  Whether I'm feeling good or bad, I really believe it will be how I handle my now that will ultimately define me.  

I don't want my substance to be stolen.  I want to be strengthened as I move forward in my moments of adversity.

Puzzle of Lupus Teleconference

Just finished with a teleconference with Dr. Philip L. Cohen, M.D., Rheumatology Section Chief, Temple University School of Medicine sponsored by the Lupus Foundation of America.  


He went over definitions, common treatments and possible treatments coming down the pipeline in research.  He had a nice PowerPoint that covered all the major points.


The thing that impressed me was that he stated up front that this disease has a tendency to be fairly individual. While it can be identified as an auto-immune disease, the symptoms any individual lupus sufferer might have may differ wildly.  


Dr. Cohen emphasized how important the relationship you have with your doctor is.  He also talked about how critical it was to be treated with the correct medicine at the right time, and to not be 'over-treated'.  As 'over-treatment' can bring its own set of issues.


Over all he emphasized that despite the flares, a lupus sufferer can lead a normal life.  


For me, as a recently diagnosed lupus patient, I find it comforting that there are doctors who are willing to have open dialogs. I have so much to learn. I know that the resources are out there and I am grateful.

I Give Myself Permission To

I admit to having a Type A personality.  I have a drive to get things done. Mind you, in my own fashion and time.  But get them done none the less.  This illness interferes with my Type A-ness.  It is a fundamental infringement of the need to get things done.

So, I hereby give myself permission to do the following:

1. I give myself permission to take things step by step.
2. I give myself permission to rest as I need to.
3. I give myself permission to create.
4. I give myself permission to put things off until tomorrow.
5. I give myself permission to not make excuses to make others feel better about my situation.
6. I give myself permission to accept myself exactly the way that I am (cellulite and all).
7. I give myself permission to ask for help.
8. I give myself permission to ask for what I want.
9. I give myself permission to to be important.
10. I give myself permission to screw up and fix it as I can.
11. I give myself permission to be vulnerable.
12. I give myself permission to live any dream I dare to dream.
13. I give myself permission to hit the reset button on my life as many times as I want.
14. I give myself permission to love.
15. I give myself permission to say 'no', if the request is too much for me at that given time.
16. I give myself permission to not let negative people stay in my life.
17. I give myself permission to be successful.
18. I give myself permission to keep my focus on what is important to me, not what others say is important.
19. I give myself permission to stop thinking about what others think of me.
20. I give myself permission to be happy.

What do you give yourself permission to do?

Fractured Reality

I feel like I'm being torn by what I use to be able to to versus my now.

Things that use to be easy, take more effort.  Much more effort.  I just spent the last two days at a writer's conference.  One I go to annually.  I came home in a paradoxical mix of exhaustion, brain euphoria, brain fartiness,  energized.

Yes, my body and mind were at war with its very selves and neither part seemed to come out the victor.

The good news is that I came out with a lot of great information.  The bad news is that I need a vacation from the vacation that I took before I go back to work.

Do you think I could clone myself? Or would that just make me tired in two places?

Acceptance of my Now

I’m mourning the death of my perception of youth and accepting my now.  My now isn’t old, or decrepit, it’s just slower.  I don’t know if I know how to down shift my life.  I know that I’m going to have to learn fast to make it work.  I have no choice. I have a life to live.

I’m sick.  I own that.  But that won’t be the face that the majority people will see.  Most people won’t be able to tell, unless I say something.  That is the way of this disease.  But I have to make those concessions to be the person that I want to be and stay ahead of this thing. 


The people I trust and love will always be there and support me as I journey.  Their company on this path will be invaluable.

I guess that instead of running (not that I've ever been a runner) I'll be sashaying with fierce style and determination at my life.  I have miles to go and milestones to pass.  In this now that I live in.

Hamsters for Free

The hamsters that keep my brain engaged are running amok.  Seriously.  They are not paying attention to my need to sleep.  Instead, when I close my eyes and work on clearing my brain to allow me to sleep, the hamsters are busy stuffing more things on the stage that is my mind's eye. 

Running, Running, Running

I just want to sleep.  Sleep without dreaming, thinking, worrying about some weird obscure detail from work, or apparently visiting places without the benefit of a passport stamp.

Those hamsters are speedy little devils, they are producing more than I can clear away in my mind at any given moment.  Just when I think that I have a clear mind, I can hear the next load get ready to dump.  I have no recourse, no where to shunt it off to.  

I do not function well on 4 hours of sleep.  People do not fair well around me, when I need sleep.

Anyone want some hamsters?  

Roid Fatigue

The scary polka dots seem to be on the retreat.  The doctors put me on 6-day pack of prednisone. I should be off that in another 3 days.  Then back on the plaquenil.

The dots aren't multiplying, nor are they looking like I'm mutating in to an alien anymore.  I'm feeling relieved about that. However, the prednisone is making me tired.

Of course, to be fair, everything makes me tired now-a-days.  I long for the days when I could get by on little sleep and face the day with a sharp wit.  Instead, I'm feeling like I'm sleep walking have the time.  Of course if my mental faculties were at one hundred percent, my plans for world domination would be well underway.

Mmmm, have I been vanquished by a super hero?  Am I a super villain?

Stay tuned....

Sleep Deprived

I can't remember the last time I slept the night through.  Seriously.  I'm waking up 2-4 hours into my nights rest or a couple of hours before my alarm clock.

Click! My brain turns on and I can't make it go back to sleep.  It has been this way for years.  As I'm researching, I'm finding that I'm not the only one with this problem. (At least the lack of sleep part.  I don't know if everyone is experiencing the active brain part.)

I do know that this turns into a vicious cycle.  Lack of sleep>Runs down any body and mind defenses>Body rebels> Mind rebels> Everything gets sick> Down for a couple of days or weeks> Recovery (kinda, at least can function again). Lather, Rinse, Repeat.

My reality doesn't let me have much down time - physically or mentally.  Yes, I know that I have to make it for both.  I'm working on rearranging my life to accommodated this new set of restraints.  But when you are a Type-A personality who has a hard time NOT forging ahead....

Yep, I need some sleep, just to survive my inner battle with myself.  I'll let you know who wins.

Optimum Speed for Our Circumstances

Saturday was a general conference for my religion.  Where leaders address members globally with words of wisdom and edification.  This is a two day televised event.  Open to the public.

I only mention it, because of something that Dieter Uctdorf said.  'We would do well to proceed at the optimum speed of our circumstances.'  That simple phrase struck me profoundly.  I know that I often push myself beyond what is prudent.  Sacrificing my health and sanity in the process.

The irony is, if I were to slow down, moving within the means of my energy and my circumstances I could accomplish so much more.  I know that sounds like an oxymoron.  But it's not.  It is a signal of self acceptance and love.  Acknowledging myself.

I'm still figuring out and accepting my limits.  There are more than I'd like.  That being said, I know that I can still dream and live a full life all while dealing with my now.

Polka Dots

I'm still polk-a-dotted.  Got a hold of my GP and Dr. S.  Both have suggested suspending my use of Plaquenil for 3-4 days to see if the spots will go away.  Dr. S didn't seem all that positive that it was a drug interaction.  But my GP wanted to make sure.

(Que the dueling banjo music)

The small spots seem to be getting bigger and multipling, the big spots are getting uglier.  The blessing is that so far they are on places in my body that are covered in clothing.

I've stumped the doctors! Woot!  Now I get to go on short term bout of steriods to see if it does anything.  They want to test me for Lyme.  I tested negative for it in two earlier blood tests this year.  No tick has touched this body.  (just the thought makes me gives me the heebeyjeebies)

The bad part is that I'm itching all over and am still dotty.