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Friday, January 28, 2011

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.

Thursday, January 20, 2011

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.

Friday, January 14, 2011

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.

Monday, January 10, 2011

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.

Thursday, January 6, 2011

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.

Sunday, January 2, 2011

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!