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.

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.