Saturday, May 30, 2009

Infections, Infections

Throat and intestinal infections.  That's what I have today folks.  It's been lots of fun!  On the plus side, I'm losing that bothersome last five pounds I've been trying to shake for months.

The hardest part of this is that my brain is tired.  Usually, when I'm not feeling well, it's just my body.  Now, it's my mind.  I'm too tired to read or think.  It's a bit frustrating.  I always felt that lupus couldn't touch me as long as mentally I'm able to keep up.  My husband tells me I'm being hard on myself, and I need to rest.  He's probably right.

There are two days left in Lupus Awareness Month.  Apparently, I've decided to celebrate Lupus Awareness Month by having lupus.  The rest of you, get out there and share your lupiness with the world!

Take care lupies.


Friday, May 22, 2009

Gotta Love that Prednisone - I have no choice!

Well I feel better than I did a few days ago.  I finally broke down and broke into my emergency stash of Prednisone.  I hate to turn to the Prednisone because of the long term use side effects, but my asthma was killing me, and also, I was just miserable in pain.  I have a love-hate relationship with Prednisone.  When I use Prednisone for a few weeks, it's great.  Longer than that and it makes me feel more miserable than when I started.  I am enjoying my burst of energy right now.  I'm not going to let it go to waste!  I'm going to try to do some productive things this weekend that I haven't had energy to do in the past few months.  Maybe I'll take a short hike tomorrow morning!  

In Lupie news this morning, there's tons of things going on for Lupus Awareness Month.  In Canada, there's Walk a Block for Lupus on Sunday.  Knox College in Galesburg, Illinois is holding a Spring Concert.  Just tons of things, so check your local news and see what's going on.

Have a lupie day!


Wednesday, May 20, 2009

The First Hour

Good Morning Lupies!

I woke up about a half hour ago, and I'm lying here contemplating my day.  I had a rough one yesterday.  I haven't been able to sleep through the night for a few days because my asthma has been troublesome.  Then yesterday I woke up with nausea and diarrhea.  My friends wanted to go out to lunch when actually, my stomach was feeling very blech.  I didn't want to tell people I felt bad yesterday because sometimes it feels like that's all I say, so I smiled and said, "Sure!  Sounds great!"  I did choose a place that I thought I could find something light.  We went to a healthy Japanese restaurant, Sachi Teriyaki in Inglewood, and I ordered a bowl of chicken teriyaki and rice.  It tasted so good, and it sat so well, I was able to eat the whole thing.  I'm glad I didn't opt out.  It was the best I had eaten for a few days.

There was also another earthquake yesterday!  Let's just say, it made me a little jittery.  By the end of my work day yesterday, I had chills and my asthma really started to hit me hard.  By the time I made it home, I could barely breathe.  I took about 20 mgs of prednisone and relied heavily on my Albuterol.

Now, I'm lying here in bed after being awake for about 35 minutes now, and I'm trying to gather up the energy to get up and get my day going.  I was hoping to bake cookies for tonight's weekly poker game, but so far, I'm just not feeling up to it.

I think I'll get up, brave those first few lupie steps, eat a bowl of raisin bran, take meds, meditate to clear away yesterday's crappy feeling day, and focus on today and right now.  Not how bad I felt yesterday, nor all the things I have to do today.  Just right now.

Sometimes, that's all you can do.

Live Lupie!


Sunday, May 10, 2009

World Lupus Day

Today is World Lupus Day, and this month is Lupus Awareness Month.  I had plans to put up posters and hand out fliers, but I guess I was too busy having lupus to spread lupus awareness.

Yesterday, I was set to go to the Revlon Walk for Women to take pictures of my co-workers, but I woke up in dreadful pain.  When we got to the event, I could barely walk because I was in so much pain.  By the time we got to the location, everyone was gone.  I forgot to bring the fliers I had planned to hand out about Lupus Awareness Day.

Then I thought that today I would go and put up posters around the neighborhood, but my family took me to brunch, and I came home and slept for five hours.  My brain has far more ambition than my body.  It's not too late to put up posters for Lupus Awareness Month, so I think I'm going to go do that when I'm done writing here.

As I said, my brain has far more ambition than my body.  Yesterday, I had planned to go to a party after the Revlon Walk, but I just couldn't do it.  My joints were aching, and I had a fever.  I told my husband to let me sleep for 15 minutes and then we could go.  I woke three hours later.  I felt so bad because when I miss events when I promised I would be there, I feel like a flake.  

With lupus, you really have to learn to forgive yourself when you just don't feel well enough to do something.  I'm forgiving myself a great deal this weekend!

If you have more energy than I seem to have right now, please help out by posting fliers about Lupus Awareness Month.  You can find fliers here on the Lupus Foundation of America Web Site.

Thanks Lupies!


Tuesday, May 5, 2009

Swine Flu Broo haa haa

Hi Lupies:

As you all know, I've been struggling with a flare, but I feel like I'm on the mend.  I'm able to get around a lot better these days, and I have enough energy to make it through my day.  I start to get sleepy in the afternoon, but I make it through.  It eases my mind a bit not to be struggling as much.

Speaking of ease of mind, the Lupus Foundation released its swine flu advisory last Friday.  I was a bit frustrated that it took so long, but what are you going to do?  Turns out that we should do nothing any different than we usually do.  Lupies are more prone to infections when we're taking our immuno suppresive meds, so we have to make sure to stay away from sick people, but that's nothing new, right?

Whenever there's a flu outbreak, my husband Geoff freaks out more than I do.  He always wants to just lock me away in my room away from the world.  I've been dreadfully sick from the flu before.  It almost killed me.  Geoff never wants to go through that again, and I'm not to crazy about the concept either, but I don't want to hide from the world!  Usually, I manage to get him to let me leave the house by promising to use hand sanitizer and promising not to let anyone touch me or breathe on me.  

Lupies, we have to live our lives.  We cannot wander around afraid of every bug out there.  We should be cautious.  If you know someone is sick, stay away from them.  Don't even stop by to say "hi".  I've had people who will tell me they're sick with one breath and then lean over for a kiss in the next.  It's best just to avoid them all together if possible.

So don't be scared, be cautious.

Take care lupies!