Saturday, April 25, 2009

Embrace Joy

Hi Lupies!

Today is another one of those struggle filled days.  I woke up at 7 AM feeling miserable.  The first one hour of the day is the most challenging time for a person with lupus.  Everything hurts as you sit up, and that first step on the floor causes pain to shoot all through your body.  It's enough to send you straight back to bed.  If not for the desire to pee, a person probably wouldn't get up at all.

Anyway, after I got up and peed, I had a little breakfast and watched last week's Desperate Housewives.  I usually watch everything close to a week behind because I normally don't have the energy to stay awake at night to watch television.  After that, I read a little news on my laptop and played Lexulous on Facebook.  I have to say.   I love Lexulous.  It is by far my favorite Facebook activity.

Back to the news.  I read a story about Julia Kane an artist whose pain is relieved through painting.  About painting, Julia says, "It's absolutely freeing.  I don't even feel the pain anymore.  It just gets me beyond it - like I'm in a new space in time while I'm painting." 

I think I feel that way about reciting poetry.  Writing poetry hurts.  It hurts when I hold my pen or when I type words on my laptop, but when I'm reciting poetry, I feel like I'm not living in this world anymore but in my poem.  I remember one time, I had this horrible urinary tract infection that had me running to the bathroom every five minutes on the eve of a poetry reading.  When I walked up to recite my poetry, I was able to recite for a whole hour, but the second I was done, I was back to running to the bathroom every five minutes.   

We all, especially lupies, should strive to find something that pulls us out of the pain.  Even if it's just for a little while.  Look at your hobbies.  They may be your lifesavers.  

Take care Lupies!


Thursday, April 23, 2009

Some Good Stuff

I've been focusing on separating pain from suffering lately.  I am in a lot of pain, but I have lots of friends and family who support me.  That helps to relieve my suffering.

Last night, my friends and I sat around playing our weekly game of poker, and it was such a great time.  I was so exhausted and in so much pain, but I didn't mind it so much because I had good company, plus I was winning!  That helps alleviate suffering too.  

My last post focused on negative lupie press, I thought I'd post something lupus positive.  The Ad Council has launched a new lupus awareness campaign.  It's running a great site where people with lupus can keep a diary of what it means to have lupus to help others.  There's also a message board where you can reach out to others.  Check it out.

Take care lupies!

Lupie Kat

Monday, April 20, 2009

This Condition Some Call Lupus

Hi Lupies!

I'm in lupus management mode now. This means that I'm still in a flare, but I'm going to have to learn to live my life while dealing with the flare. I'm on my pain meds everyday. I'm walking at a slow pace instead of my quick clip of a walk. I've given up on my shoes because they just plain hurt to wear, and I have cushions on my elbows because they hurt to rest on my desk.

This weekend, my friend Rachael picked me up and took me to the Getty for a Russian poetry exhibit. I loved it. I'm glad she picked me up because I wouldn't have been able to drive myself. It was good to get out after spending so much time cooped up. I think the depo shot I got from the doctor is working a bit because I couldn't even imagine doing something like that the day before.

Feeling this way is making me less tolerant of others again. I'm not happy with how lupus is being treated in the media lately. Apparently, there's some rapper accusing another rapper of faking lupus. Also, on a recent episode of 30 Rock, a woman said that Liz Lemon could fake a mild case of lupus to get disability insurance.

First off, it's not that easy to get disability insurance payments for lupus! Trust me, I hear from women everyday in misery who are struggling to get by because they lost their job, and they can't get disability. My sister couldn't get disability for lupus until her kidneys started to fail, and that only succeeded on appeal!

Lupus isn't a disease for convenient excuses. It sucks! So you entertainers out there, stop treating it so lightly. Many of us just try to get by day to day without giving up. We don't need people who don't understand what it's like to be miserable everyday making fun of it.

I know, I know. It's just a joke. Lighten up. I get it. I'm sure I'd get it a lot better if I weren't sitting here in pain.

This is a challenge to you writers and actors at 30 Rock. You got your cheap laugh, now do something good to balance out the scales. Do a public service announcement for lupus. Let people know that it's a serious condition. That even though you made a joke about it, there are people out there suffering and dying from it, and those people need support. Those of us even with the "mild cases" of lupus trying to scam disability insurance would appreciate it.


Have a lupie day!


Thursday, April 16, 2009

Wear Something that Makes You Smile

Okay, I should start off by saying that this blog entry may lack focus because I'm tired, and my thoughts are everywhere today.  This is what usually happens when I'm in a flare because I get a little anxious when I'm in a flare.

I feel miserable.  I've been pretty much fighting back the flare for weeks now, and I should learn to slow down, but who can slow down?  Monday I missed the Dodgers' home opener.  I wasn't the happiest person when I found out that Orlando Hudson hit the cycle.  Oh well, I suspect that the Dodgers will have many more momentous experiences this year, so I won't cry over the first ever occurrence in Dodger Stadium history.

I went into work on Tuesday, but I wasn't feeling too peachy.  Then Wednesday I felt worse, but I got up, and I put on my make-up.  Make-up is something I rarely do, but my skin wasn't looking to great.  It's just peeling off in flakes on my face, hands, and feet.  At some point during my morning, Geoff starts following me around because I'm moving slowly and he wants to get to work.  He doesn't say anything.  Just follows me.  I have to say, it stressed me out a bit.  He was probably frustrated that I was taking time to put on make-up.  Something he finds completely unnecessary.

We get out of the apartment and start to walk to the car.  Pain shoots all through my body.  From my toes to my knees to my shoulder to my head.  Geoff asks me why I'm walking slowly.  I tell him because I'm in pain.  (I love my husband, but sometimes he acts like we just met.)  We get into the car, and we barely make it out of the driveway before I get nauseous and start heaving.  He had to turn around and bring me home.  He helped me settle down on the sofa.  I felt so bad because I knew he had a meeting.  I feel like such a pain sometimes.

There have been moments this week where the pain is curl up in a ball debilitating.  I spoke to my doctor and she said to take pain meds and rest.  If it's not better by tomorrow, she said to call her and I'll go in for a steroids shot.  I really hate the pain.  There have been points where I just wished I could die and get it all over with, but then I think of my mother.  My mother died of cancer when I was 19.  I miss her so much.  I really need her.  When I think about what a hole I have in my life without my mother, I think of my kids, and I never want them to experience that kind of emptiness.

Because of this, I take my meds, take a nap, wake up, take a shower, put on my Fernando Valenzuela jersey, (because thinking about the Dodgers makes me smile), and try to keep going for those who need to me to keep going.  I think I'll take another nap and try to take a walk to the store for a peppermint patty.

Take care lupies.


Monday, April 13, 2009

It's Opening Day!

I'm feeling very lupie today.  Usually when I'm feeling this bad, I don't write, but I figured I may as well vent.

I love baseball.  In particular, I love the Los Angeles Dodgers.  I was born in Los Angeles, and I am a proud Angelino.  That means being a proud Dodgers fan.  I never miss an opening day, but today, I'm actually thinking about it.  

I'm feeling achy and drained.  I'm coughing non-stop.  I just want to stay in bed and rest, but it's the Dodgers' home opener today.  I may end up giving my ticket to my daughter and my sister in law and staying home.  I really wish I were feeling better. 

I think that maybe if I drag myself to go to the game, the jazzed up atmosphere may help me to feel better.  Or it could make me feel worse.

Tips for you lupie baseball fans.  Make sure to wear your protective sun gear.  Get seats under the bleachers so you're not in the sun.  Drink plenty of water!  Bring a comfy cushion to sit on.

In the lupus news world, the Lupus Foundation has launched a new campaign to promote lupus awareness.

Take care lupies!


Thursday, April 9, 2009

Is it Your Birth Control?

Okay, Forbes published an article stating that birth control pills can likely increase your chances of developing lupus. When I first read this, I started to think to myself, "Did I give myself lupus by taking birth control pills?" Then I remembered that my lupus symptoms emerged when I was 15, about 10 years before I even thought about taking my first birth control pill.

We lupies do this. We'll read an article that says that something causes lupus, and then we try to figure out a way to blame ourselves, and then we make sure that our children stay away from that thing. We drive ourselves crazy.

Before you hear about this new study, and you decide to throw out your birth control pills, talk to your doctor. Also consider that if you're reading this, you likely already have lupus so it's too late. It does make me consider whether or not my daughter should be on them. She's taking them for endometriosis. Also, I have been concerned about her lately because she's been complaining about joint pains and sluggishness.

More things to worry over.

Take care all.

Live Lupie!