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.

Horizontal and Vertical Adjustments

So much for my resolve to post more regularly.  It's allergy season and I'm starting to feel as bad as I did this time last year.  To top it all off, I decided to get proactive and get allergy tested.  I've lived in Virginia for almost six years and haven't gotten the specifics of what sets me off other than oak.

I'm off my allergy meds, sitting at work, wishing I was any place else.  Preferably asleep. The irony?  I couldn't actually sleep if my life depended on it.

AND, I'm breaking out in spots.

I AM UNAMUSED!

I know that Lupus is requiring a different mind set from me.  I'll be honest.  I'm having trouble adjusting. I feel like I'm a bad picture on a television screen. Out of focus and out of whack.  Part of me wants to look as bad as I feel, while the vain peacock in me reigns that in.

I'm grateful for the small things.  My sense of humor, my friends, the fact that I can still work.  I'm grateful that I can string my thoughts together for a good whinge.

I'm working on focusing the picture of my life.  Coming to terms that the new picture will be nothing like the old one.

That's going to take a while to reconcile.

Family Politics

On top of dealing with the vagrancies of Lupus, I also have to deal with all the issues of an older parent who is dealing with their own health issues.

Stress is on of the factors that contribute to Lupus flares and I live in a pressure cooker of stress with very little respite.  I go to work so that I can have a break. Yes, that's right. Work is less stressful than my home life.  How sad is that?

Here's an example of what I have to deal with.  Today was a general broadcast for my church. We could stay at home and listen.  Normally this is a nice break from the normal worship service.  Mom, who is hard of hearing, was having trouble with her hearing aids. This frustrates her to no end.  I can understand this.  I respect this.

She has headphones that she can use to focus the audio from the television into her hearing aids.  Of course she looks like she rocking out to something. Not enjoying a worship service.  As I try to convey they make her look cute, she takes complete offense and tells me I'm attacking her.

I don't make a big deal over the Lupus at home.  I just don't.  Mainly, because, I have to justify everything to my mother.  She wants detailed descriptions of everything, then she second guesses everything.

No, she does NOT have a medical degree.

I stand my ground and tell her that I'm not attacking her she is having none of this.  Apparently, her deafness is all about me.  That's right folks.  I have figured out a way to capitalize on the hearing impairment of my mother and make it all about me.

The moment those words crossed her lips I was flabbergasted.  FLABBERGASTED!!!!!!!!!!!!!!!

It's bad enough I have to deal with Lupus, but the insane imaginings of an aging parent is getting more than I can handle.  I'm going to have to fly the surrender flag soon and give the responsibility to the other siblings.  They will have to make up their minds on how to divide up care.  I just can't do this anymore.

Dental Work

I'm getting a crown on a back molar.  That wouldn't be an issue, if I didn't have to go back in and have it recast because something happened to the original cast at the place where the crown is being made.

Why am I talking about this on a Lupus blog?

Because, I have a mother of a headache that is exacerbated by allergies and a flare only to be irritated by the tension of holding my jaw tight for three minute intervals why the most nasty stuff in the world is in my mouth for the mold.

My mouth is still tender.  My sinuses are in revolt.  My head is ready to explode.  AND my system in general just wants me to fly the surrender flag and curl up in a ball to go back to sleep.

Even though I feel like an extra from the dentist scene of the Little Shop of Horrors, my dentist is a good guy. He is aware of my condition and gave me breaks between castings.  I just have to be aware that this is something that will have a more profound affect on me in the future.

I am unamused.

Happy Face

One of my favorite movies of all time is an Australian film called 'Strictly Ballroom'. When things are going poorly in the film, the mother goes around saying 'Happy Face! I want to see your Happy Face!' The litany goes from a forced happy voice to that scary 'I'm hanging on by my last nerve and I'll take you over the edge with me' voice.

Honestly, there are some days when I feel like I need to be screaming HAPPY FACE! I'm putting on my HAPPY FACE!  Just to get through the day.  I really don't want to put my 'I feel crappiness' on anyone, so I slap on a smile and get through it.

Yes, I live deep in the land of Denial.  And I'm proud of it!

This doesn't mean I'm ignoring my needs.  I'm just going about setting my boundaries quietly.  Enforcing them without making a fuss.  No matter what, the family doesn't want to deal with my illness.  And frankly, it's exhausting at times having to justify how I feel.

I have really good friends who bear a lot of brunt of my whinging.  I do my best to make sure that I give them equal time.  After all the world really doesn't revolve around me.

With the advent of Spring, I'm not feeling so springy.  My allergies are kicking off some flare activity.

So, I'm going to just keep yelling....

HAPPY FACE!!!!!!

Maybe I'd better step away from the keyboard....

Allergies are Not My Friends

Spring has sprung with a vengeance here in my part of the world.  I love seeing the flowers and the trees starting to green.  Just the thought of a rejuvenated world is uplifting.

However, with all that greening up comes a price for me.  Allergies.  Specifically tree pollens, followed by grasses, followed by just general reaction to the nature which I love so much.

This year, I'm catching the signals early.  Last year when this odyssey began in earnest I had an episode of shingles thrown into the mix.  I'm praying that all I have to deal with are the allergies.

As is stands right now, the allergies are not playing well with the Lupus.  The allergy symptoms seem to be exacerbating any Lupus symptoms I may be having, forming a vicious circle.  Affecting my sleep, my cognitive functions and my general temperament.

I have a doctor's appointment coming up in a few weeks.  Smack dab in the middle of allergy season. I may be trying to live in a bubble by that time.

Circumstances

Half the month as gone and I'm behind.  Not to say things haven't been happening.

Let's run down the list.

1. I'm learning to identify how Lupus and my allergies play together.  Since I have some aggressive seasonal allergies, I'm learning how my Lupus reality and my allergies play off each other. 
2. I've completed a novel and am shopping for an agent.  While this isn't directly health related, it is something that affects my stress levels.  After all rejection is a stressful thing.  For that matter so is success. 
3. Work has been moving full steam ahead.  Lots of changes happening. Not bad, just a lot of balls in the air that require me to stay sharp.  I'm still dealing with some exhaustion.  The cognitive haze that I was dealing with last summer has not returned. I do believe that that is a due to the Plaquenil.
4. I have several writing projects in various stages.  Just because one project is finished, doesn't mean that I rest on my laurels. I have to continue to write, my goal is to augment my income as a writer.  Therefore this is essentially a second job.  

Then of course there are the normal family and day to day things that never stop.  My life is full. Better than it was.  Is it where it was a couple a years ago? No. Will it ever be? Probably not. I'm okay with that.  I rather know the big bad in my life. Then I can find my work arounds.  I can still live my life.  

Live can be lived in the most extraordinary circumstances.  As a person, you have to be willing to see the opportunities where they lay.  And the opportunities are vast.

Am I glad I'm sick? I'd rather not be.  Will I wring my hands and decline like a Victorian maid?  Absolutely not.  

February - See Ya!

This month as passed way to fast.

I apologized for the lack of posting this month.  Februaries are never a good month for me at the best of times.  Between the evil pseudo holiday of Valentine's day and the anniversary of my father's passing, I had a lot to ponder this month.

Oh, and one of the many bugs out in the world, got me.

I spent the last weekend of February sleeping off a nasty virus.  Frankly I could still take a couple of power naps. Alas, I must earn a paycheck.

I have learned several valuable lessons this month.

1. Don't run faster than I have the strength too.  I have a bad habit of going to fast, doing to much and not listening to my inner warning alarms that tell me I need a break.  This month as certainly been a reminder.
2. My experience, while unique, is not something I have to go through alone. Having a good support system in place is invaluable to keeping sanity.
3. A day without laughter is a sad day indeed.  No matter how bad things seem, humor and hope go hand in hand in dealing with any experience.
4. Adventures in new food can be interesting. If my mother offers me chicken one more time, conveniently forgetting my vegetable-base lifestyle, I may not be responsible for my actions! :)  I'm becoming acquainted with the varied uses of tofu.  Who knew I'd like it.

I've got a lot of good things happening.  I just have to remember to breathe through the entire process.

Realizations

I had a good appointment with Dr. S this morning. My SED levels have dropped, which is good.  They are still elevated, but not like before.  It would seem that our course of action seems to be working.  The swelling around my joints has also visibly decreased. All of this is good.

None of this means I can say 'It is done!'  If anything I have to maintain my vigilance over my choices.  I may never get my levels of energy back that I had.  I'm not going to pine away wishing for lost glory. Instead, I'm going to look forward to what I can do.

We discussed my change of diet.  Dr. S thought I had made a wise decision. He seems to like the fact that I don't go half cocked on anything. I research, gather all my information then make my decisions.

I have to admit that I have been feeling better since I started the vegetarian based diet.  I'm being careful to make sure that I am eating a balanced diet.  I'm not going vegan.  I'm keeping my dairy, egg and fish options open.

I'm proceeding with caution as I manage these new waters. Spring and Summer will be the time to be vigilante for me. I've not done well in the sunshine.  I never have.

This time I can approach this summer prepared.  My life has changed, but my dreams and goals haven't.

Principles in Food

Starting last Sunday, I decided to make a shift in my eating pattern.

A shift I have been pondering, pondering very hard (kinda the way I think of exercise), for the last year.

I have shifted to a more vegetarian lifestyle. I've been doing this more and more over the last year. But I made the commitment yesterday.

Research shows that a more plant based diet helps with the inflammation issues in Lupus. Although I will need to avoid alfalfa (though I don't eat alfalfa on a regular basis) because there are properties in it that can trigger lupus flares.  Which would be one on of the reasons to restrict any product that might have ingested alfalfa. (so long anything that moo'd or bleet'd).  There is nothing that says I can't enjoy anything that swims. :)

My choice is guided by the following principles:

And again, verily I say unto you, all wholesome herbs God hath ordained for the constitution, nature, and use of man—

Every herb in the season thereof, and every fruit in the season thereof; all these to be used with prudence and thanksgiving.

Yea, flesh also of beasts and of the fowls of the air, I, the Lord, have ordained for the use of man with thanksgiving; nevertheless they are to be used sparingly;

And it is pleasing unto me that they should not be used, only in times of winter, or of cold, or famine.

All grain is ordained for the use of man and of beasts, to be the staff of life, not only for man but for the beasts of the field, and the fowls of heaven, and all wild animals that run or creep on the earth;

And these hath God made for the use of man only in times of famine and excess of hunger.

All grain is good for the food of man; as also the fruit of the vine; that which yieldeth fruit, whether in the ground or above the ground— (D&C 89)

Lupus was not something I chosen to have in my life. I'm still struggling with how to cope with it. I need to be smart and sensible about my choices.  I can work to make my body as healthy as possible.

I choose to give my body a fighting chance. That includes the food I eat, utilizing my faith, and not beating myself up to badly over the course of this life long experience.

My Minefield of Denial

I'm the first to admit I'm happily sitting smack dab in the middle of a minefield of denial.  With my fingers in my ears, singing LA-LA-LA-LA-LA at the top of my lungs.

I'm having issues with seeing how to reconcile the limits of Lupus with my job, my goals, and my dreams.  Yes, I'm grateful that I now have a label to put on the misery I've been experiencing over the last several years, but I HAVE THINGS TO DO!

A good friend reminded me last night, that I needed to throttle back and re-prioritize things. I needed to reset my level of expectations. Stop going full throttle and listen to my body.  If I didn't, my body was going to stop everything for me.

Deep down, I'm feeling a lot, and I do mean A LOT, of resentment about this.  Psychologically, my physical weakness is making me feel old.  I am not old. I'm not even past my prime.

I'm faced with a deep seated fear that I won't be able to provide for myself.  This fear is really gnawing away at me.

This leaves me sitting in the middle of my minefield of denial, with my eyes squeezed shut, babbling loudly, hoping it will all go away.

I'll let you know how this works out for me.

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.

My First Lupus Flare

Last summer was hell.  I'll be honest.  I was so miserable, that if I was a suicidal person I would have ended it all. For the record, I am way to stubborn for that kind of action.

I had no idea what was causing my symptoms, every doctors visit left me angry and helpless. My blood work was inconclusive to my general practitioner.  The one ray of hope was that she did listen to me, she never wrote me off as being a hypochondriac.

After exhausting all our options (and taking copious documentation) she sent me to the rheumatologist.  He ran his tests compared them to my previous blood work and started connecting dots.  Then started me on Plaquenil. So far, I haven't felt as crappy as last summer.

Why do I revisit that time?  Because I realized that I was living through a 'flare'.  A long, vicious, difficult flare. The conclusion is, I'd really like to avoid them as much as possible. please.

My other great enlightenment is that Lupus is a highly personal disease, yet, to get the funding need the LFA needs to try to standardize it.  Which I do understand.  The LFA blog just published an interesting article regarding how the result of a 4-year international study has just defined what a Lupus Flare is:

A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.

I have to give the research teams credit for keeping it as flexible as possible to take in account the individuals that suffer from this disease.

I'm still figuring out my limitations with this new circumstance in my life.  I often push myself to hard and far.  Honestly, I'm stubborn.  I have work to do, goals to achieve and an awful lot of life to live.

PX Palpitations

Its a new year with a new health plan.

I did all my homework, all my research when looking at the plans my company offered.  I weighed, VERY CAREFULLY, the limited options.  I called the prescription drug plan to talk about my options.  I did the math.

I WAS FREAKING HOODWINKED!!!!!!!!!

Damned if the drone at the other end of the phone didn't lie to me.  This wasn't a new company that my employer was dealing with.  They knew what was being offered for the next year.  I laid out very carefully my questions about the cost of my prescriptions as I built the costs into my health care budget for the upcoming year.

Better to anticipate the worst, hoping for the best.

Last year's plan, my prescriptions cost me $90 every 3 months.  Thanks to the incorrect information I was given, my prescriptions are now going to be costing me around $250 every 90 days.

People, I'm not taking any name brand medications.

I have no idea what this next year will bring me in this new frontier that is dominated by Lupus.  It scares me.  It annoys me.  It makes me angry.

I am unamused to say the least.

sigh.

One Step at a Time

I have a love hate relationship with health insurance.  Don't get me wrong. I am grateful that I'm able to work to have' affordable' insurance.  But lately, with the passing of the new health care bill I'm not so sure anyone has been done any favors.

At work, my HR department is scrambling to keep up with all the last minute changes that keep coming down the pike.  While I know that I'm insured, I can't access any of my insurance information on-line at the moment.

With all of this, the actual costs keep going up.  I'm single and I'm complaining.  I know that families are being impoverished by the costs.  Work is always running Wellness programs that encourage us to be fit and healthy.

The problem is with Lupus, participating in those programs is tough.  I know that it is a Catch-22, the better I eat, the more exercise that I get, the better I'll feel.  It's getting into the swing of it.  I'm tired. I'm struggling to maintain my status quo.

I sometimes feel as though my insurance is contingent on me getting better.  When I know that there is no 'better' only management.  I didn't ask to get sick.  I'd like to not feel like I've done something wrong when I'm trying to figure out all my costs when it comes to my health insurance.

How do I manage all of this?  Like I do everything else, one step at a time.

A New Year, Same Attitude

2011 has started with a whimper.  I do mean that literally.  I have a sinus infection that has taken me hostage, complete with a vicious headache.

So I feel like crap.  Various levels of crap is nothing new.  I find that it's the attitude by which I wade through my difficulties that give me the edge.

I firmly believe that I have things to do, small planets to kick out of orbit, and plenty of chaos to create.  I can do it whether I feel like a million bucks or like the bottom of a trash barrel.

I'm meeting 2011 with an attitude and proud of it!

I hope you do too!

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.