Sunday, December 27, 2009

Lupus, Pregnancy, and Raising Kids

Good day Lupies. I have to say, I'm enjoying this very long weekend. I don't want to leave my apartment. I just want to be lazy and lie around enjoying the quiet of my home and the beauty of the day. It has also been a great opportunity to catch up on the latest lupie news.

This morning I read an inspirational story about a fellow lupie by the name of Madam Low Kwee Yoong and her successful attempts to have children while dealing with lupus. She talks about her many trials and tribulations with in-vitro-fertilization, but after it all, she now has four beautiful children.

I had my children before I was diagnosed with lupus, but I now look back at some of the issues I had in my pregnancy, and I can point those issues to possible lupus symptoms. When I was pregnant with my daughter, I broke out into a rash on my forearms, and the doctors could not figure out what on Earth was going on. Now I think, "lupus rash".

Fortunately, I had my kids when I was young and before I was diagnosed. I think otherwise, I would have hesitated. Even though there really isn't any significant lupus risk for me to have kids, I would have worried. The average pregnant woman is filled with worries about the health of her unborn child. Imagine the worries that a woman with lupus goes through.

One worry is likely what effect lupus medication will have on an unborn child. These worries are often greater than necessary. There are certain lupus medications you shouldn't take if you are pregnant or plan on getting pregnant, such as certain chemotherapy based drugs. It's best to communicate with your doctor in order to know for sure what medications are safe. Be heartened that many women with lupus successfully go through pregnancies to have healthy kids.

I think the key is working very closely with your doctor to make sure you're in a healthy place in order to carry a baby.

Another concern I would have had would have been just the physical and emotional energy it takes to raise a child. My children are both grown now, but for many years I worried about the effect that lupus has had on my family. There have been Christmas dinners I haven't cooked, school events that I've missed, and things I just didn't do because I was too sick to get out of bed or leave the hospital.

In the end, I have raised strong minded and empathetic children. My daughter is amazing. She has taken care of me more times than I can count. She is smart, brilliant, and independent. I cannot imagine my life without her.

My son is bipolar and schizophrenic, and I have to say that there have been times when dealing with his issues has exacerbated my symptoms. I think that it has been particularly challenging to be there for him because of the issues I face with lupus. I have had doctors recommend finding a place to deal with him in order to take care of myself, but I couldn't bring myself to do that.

I give it my all, and I have to depend on my husband tremendously to deal handle issues. However, I must say that considering the issues that my son has, overall he is a great son. He is caring and considerate. Also, many parents with bipolar and/or schizophrenic children often worry about drug or alcohol abuse. I've never had to worry about that with Julian.

In the end, I had to accept that I wasn't going to be the perfect mom, but that's okay. I love my kids as best I can, and they know that they're loved and that's all that's important when you come down to it.

Have a great new year lupies!


Thursday, December 10, 2009

Leaving Dimes on the Elevator

Today was sort of a rough morning. I'm a bit stressed about the final projects and papers I have due for class this week, and I haven't been sleeping much. When I woke up this morning at 6:30 after going to sleep at 2:00 AM, I was in a bit of pain. Moving around helped a bit, but I still had a rough time moving around. The all around pain is just about five feet shy of manageable. My hips were in horrible pain when I left for work.

After I left my apartment, I got on the elevator headed to the parking structure, and I saw a dime on the floor. I remember as a child, I'd always be excited about finding a coin. I often considered it to be a lucky day if I picked up that coin and held it with me for the day. However, today, as I stood on the elevator, I looked down at the coin and thought, "I'm really in a lot of pain, and I don't want to pick it up. But it's money. You shouldn't just let money sit on the ground if you see it. It's wasteful." Then I thought of the value judgment of picking up the dime versus what the doctor's bill would be if something went wrong in the process of my picking up the coin. Then I got sad. Seriously, so much thought shouldn't go into picking up a coin.

But that's lupus. You put a lot of thought in virtually everything you do in a day. What will happen to my sugar or salt level if I eat that? Can I really walk that far? Do I need to wear a hat today? Should I go to that party during flu season? Can I really stay up late tonight? Is this fever high enough for me to stay home? It just goes on and on.

Here's hoping for a better mood.

Later Lupies.


Friday, November 27, 2009

Black Friday

Hi Lupies:

It's Black Friday. That infamous day after Thanksgiving when Americans take to the stores and risk life and limb for bargains. If you have lupus, you probably look at this day with dread especially if you're on a limited income. You know that you should get out there and get bargains in order to afford presents for your loved ones, but it's cold, you're achy and tired, and you know you'll pay for it for the rest of the weekend.

Here's my advice: STAY HOME!

If you're reading my blog, that likely means that you have access to a computer. This means you can shop online. There are great Black Friday deals online. There are also deals that run through Cyber Monday. I work for We list stores who offer great online deals. It's the perfect place to go to compare prices on the popular Christmas gifts. If you're concerned about shipping costs, there are plenty of stores offering free shipping today. PriceGrabber also carries a list of many stores offering free shipping. isn't paying me to go on and on like this about the site, aside from my salary that is. I just think that shopping online is the lupie thing to do. Think about it. No standing in long lines until your knees ache. No carrying heavy packages that will make your fibromyalgia act up. No temptation from over salty mall food that will cause you to bloat up for days.

You can just stay home snuggled up in your fleece pj's and get all your shopping done for everyone. So far, I've picked up presents for my mother-in-law, my husband, and my daughter. It took me no longer than twenty minutes online. That's how long it would have taken me to find parking at the mall. I remember there was a day I drove around for an hour. It was enough to make me cry. Never again!

Happy Black Friday Lupies!

Stay Home.

Lupie Kat

Tuesday, November 24, 2009

Working With Lupus

Hi Lupies:

It has been a while. With life you sometimes have to let things go in order to deal with other things. I have been in school full time on top of my job, so that has me a bit stretched these days.

My husband Geoff is in St. Louis, so we are doing the long distance thing for now. I have to say that I am truly missing that support system. Aside from missing the company of my husband, he used to help me get around. I'm in pain more often now because I cannot take pain meds and drive. My doctor gave me cream to put on my joints. I'm going to try that out and see how it works for me.

I feel lucky that I am able to do my job. We just had mid-year reviews, and I performed pretty well. Take that lupus! recently reported a study that shows 92% of patients with lupus were no longer working four years after diagnosis. It's tough to work with lupus. Especially if you have a job that requires lifting or moving. I was at the shoe store about a week ago, and I had this salesperson who was moving very slowly to get my shoes. I was very familiar with the way she moved because I've been in that type of pain. I could not imagine having to stand up and chase after shoes all day with lupus. I think I would be telling customers, "Your shoes are in the back room on the left. I'll be waiting right here!"

How have I managed work all these years with lupus? I forgive myself, and my job is very flexible. My boss understands that sometimes I'll have to work from 9:30 to 6:30 instead of 9:00 to 6:00 because sometimes my body is just going to take a little longer to warm up in the morning. I make sure that my joints don't get cold at work. I dress warmly, and I keep a heating pad at my desk. If laws allowed, I'd have a space heater too. If you can use a space heater a work, make sure you do. It really helps!

I arrange my doctor's appointments such that they make the least impact on my workday as possible. That means either in the morning or evening. Never in the afternoon unless it cannot be helped. That just eats a huge chunk out of your workday. Sometimes I see lupies sacrifice doctor's appointments for work. Health maintenance is imperative to staying healthy with lupus, so if you can, never miss an appointment. Take care of all health problems asap so that they don't affect your work performance.

Working can be a challenge with lupus, but it is possible. Especially if you have a job that isn't physically demanding and allows for flexibility.

Take care Lupies.


Tuesday, July 14, 2009

Doctors Week

Actually, Doctors Week is every week for me it seems. I've been non-stop busy for the past couple of weeks. Geoff and I took Aja up to college this week for orientation, and while we were up there, Geoff's step-father passed away, and we ended up taking him to the airport and driving the 600 miles home without him.

Aside from being sad about the loss of such a wonderful man, I'm upset that I couldn't make it to the services. Geoff wouldn't hear of it, and he's right. I would have done nothing but send myself into a flare if I tried to push myself in order to make it to Virginia in time for the funeral.

Today I'm going to the cardiologist for my check-up. It's good timing because it feels like my heart has a life of its own lately. Tomorrow I have a colonoscopy. I've been having blood in my stool and chronic diarrhea, so the doctor has to check that out.

Since Geoff is out of town, Aja is going to be my ride from the colonoscopy tomorrow. I never understand what the doctor tells me after surgery. Usually Geoff is there to ask questions. I guess that I'm going to have to try to catch up with my doctor when I come back to my senses.

I always try to end with advice relevant to my experience, and I'm having a hard time coming up with something. Oh wait, I got it! I used to have a doctor who used to give me a colonoscopies while I was wide awake. That was the most miserable experience ever. The first time my new doctor gave me a colonoscopy and told me that I would be put to sleep for it, I wanted to go and punch my old doctor in the face. If you're ever offered a choice between pain and comfort, choose comfort.

Take care Lupies.


Tuesday, June 30, 2009

Hi Lupies

I know it has been a while since I've written, but it was a challenge for me to keep on schedule when I sprained my ankle. When it first happened, I did all this research on lupus and injuries. I wondered how an injury would be different for someone with lupus. In all my research, I didn't find anything, so I thought it all would be fine. Then I woke up the next morning.

I was too dizzy to use my crutches when I woke up, so I had to crawl on my knees to get breakfast, or I had to have someone get it for me. That was extremely agitating, but you do what you have to do, right?

I'm off the crutches now, but I'm still in a brace. It looks like I'm anemic again, so my doctor wants me to go into the hematologist again. Loads of fun!

Next week, I'll be on the road. Geoff and I are taking Aja up north for her college orientation. Both of my kids will be away in college. Unbelievable!

Take care Lupies.


Monday, June 8, 2009

Sprained Ankle

Hi Lupies:

I've been having a fun few weeks.  Not!  After feeling down with the infections, I started to feel better this past Friday.  I was so excited about this weekend because I felt well enough to go out and do things. 

Friday night, my family and I went out to see "Up".  Cute movie.  My husband wanted to see "The Hangover" too, but I didn't have enough energy for two movies.  The next day, I dressed up for Carnevale at Venice Beach.  (Yes, that's how good I was feeling.)  I was feeling so happy to feel better, I was determined to make the best of it.  My daughter was embarrassed to be seen with me.  Sometimes, it's just good to look and be silly.  Especially when you're lupie.  Saturday night, my husband and I went to the theater to see a musical western.  Geoff tried to talk me out of it since I'd gone to Carnevale that day, but I told him I was only at Carnevale for an hour, and I rested for the remainder of the day, so I was good to go.

The theater wasn't a big theater, it was a small independent theater.  Right before the show, I thought I'd run to the ladies' room so I wouldn't have to worry about needing to go during the show, I walked through the door to the ladies room and hit the ground because right behind the door, there was a set of steps.  They should warn people about this!  I ended up spraining my ankle and spending the evening in the Emergency Room.  The doctor said I'm going to be on crutches for a month.  Woohoo!

Yesterday, I spent the day in a Vicodin haze with my foot elevated.  I was bummed because I missed the Dodgers' game.  I am missing more than I'm making this year.    I was just so tired from the Vicodin.  Also, it would have taken a lot of energy to wander around the stadium on crutches.  The Dodgers got killed yesterday anyway.  It's also just best with lupus and injuries to rest and take care of yourself.

Today, I'm off to work.  That should be fun!

Take care Lupies.


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!


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!


Tuesday, March 24, 2009

It's Not About How Much I Weigh. I wish!

This morning, I got up and stepped on the scale.  I make myself step on the scale every morning.  This is something I hate to do, but I find that I'm more conscious of what I eat when I look at that scale everyday.  If I go a week without looking, I'm guaranteed to gain five pounds in that time.

For a year, I've been working my butt off to eat right and exercise.  The sum total of my one year's worth of exercise has been a loss of ten pounds.  I was feeling pretty proud of that until my husband decided to give up carbs in January to lose weight and has lost something in the neighborhood of 30 lbs.  

I understand that he's a man, for one, and doesn't take immunosuppresive drugs that slow down his metabolism for another, but it's not fair dangit!  I killed myself for a year to lose ten pounds, and I miss cookies!

Okay, tantrum over.  On the brighter side, I'm healthier.  A year ago I couldn't climb a flight of stairs.  Now I can.  My friend Ellen and I took up tennis, and I wore this heart monitor where the alarm would go off constantly, and now we can do a good round before I have to sit and rest.  I've accomplished things I never dreamed I could.  I shouldn't say that.  I never stopped dreaming.  I refuse to give up.  I can't give up.  There's too much in the world to do.

So when I stand on that scale, and it tells me my body fat is too high, I just sigh, and think, "At least I can walk up stairs."  My trainer tells me not to think about that stuff, but just to think about how far I've come.  He's right, of course, but I'll probably still sigh when that ++ sign comes up on my scale.

Have a lupie day.


Sunday, February 22, 2009

I'm Disabled. So What!

I often try not to think about lupus being a disability up until the point I get that note from my doctor saying that I have to stay home from work for a few days and rest, or those other times when my doctor gives me a note to get a disability placard for my car because I can barely walk ten feet.  There are also times when I need a wheelchair to get around because the pain is too much to bear. At these points I feel like the only disabled person in the world.  At some point during my episode of self pity, I realize that as disabilities go, I'm pretty lucky.  All my body parts still work.  They may be swollen and painful, but they are working.

I'm thinking about this on Oscars night because of the Disability Advocates who are protesting the Humanitarian Award given to Jerry Lewis.  Advocates believe that Jerry Lewis portrays the disabled as pitiful and pathetic.

My mother used to tell me that blacks have to work twice as hard to be considered half as good.  As I grew up, I realized that black women have to work three times as hard to be considered a third as good.  Now, I'm thinking a disabled person has to work four times as hard not to be considered pathetic.

My boss Carlo (who abandoned me to go work for Yahoo!) used to treat me like he was one of my brothers.  When he saw that I wasn't feeling well, he'd crack these insensitive jokes.  Oddly, this helped me feel relaxed about my problems because I knew my boss treated it as no big deal.  He knew that I could still do my job no matter what was happening physically.

I honestly just want to be normal, but that's just not the case.  I would like to go out for drinks with friends, except I don't drink.  I'd like to order a non-alcoholic drink without being questioned as to why I didn't and have to answer a myriad of questions as to why my lupus medications don't allow such a dally into alcohol, and then listen to how other people with lupus drink away with no worries.  I'd like to be able to perform simple tasks without people trying to take the responsibility away from me.  I'd like to be considered for promotions without wondering if senior staff will question my health and abilities.  I would love to climb a flight of stairs without my husband asking me if I'm going to make it.

Anyway back to Mr. Lewis' Humanitarian Award.  Mr. Lewis is quoted as saying, "You don't want to be pitied because you are a cripple in a wheelchair? Stay in your house!"  Mr. Lewis may be a bit insensitive in his statement here, but unfortunately, he has a point.  Whenever I'm in a wheelchair, I do catch the eyes of people staring at me in pity.  I guess it's just human nature.  I think this pity puts a duty on the disabled.  We have to prove to others that we aren't to be pitied.  That even though we have certain physical issues, we can move beyond them and be treated as equal members of society who shouldn't be pitied any more or less than anyone else.  It resembles the same fights that African-Americans and women have to make.  I have to say, "I'm black.  So What!"  I've also said (most of the time to my brothers), "I'm a woman.  So what!"

Now with these issues of the pity I receive for having lupus, it's up to me to stand-up (or sit in my wheelchair) and say to Mr. Lewis or anyone else who tries to pity me, "Yes.  I'm disabled.  So What!"

I guess that's it for my lupie soapbox today.

Have a Lupie Day.


Friday, February 6, 2009

Too Lupie, Be Happy

I'm happy today, and it seems to make me feel good. I say this because for the past week. I've been feeling horrible. I thought I was in a flare because I woke up with a sore throat, and I felt like I'd been hit by a truck. I was achy all over. I didn't have a fever, and I had no other symptoms. I stayed home from work last Thursday and Friday, and I've been dragging myself around all week and over sleeping every morning.

On Tuesday, I discovered that there were quite a few people at work who had the same symptoms I did, and it was a relief because now I know that it isn't a flare, just a nagging bug. Once I realized it was a bug, I figured that I would get over this thing eventually, and just take it easy.

On Wednesday nights, some women friends and I play poker. I had asked Geoff to make sure to go home early to see to the kids. I know my kids are older, but my daughter is a teenager, and she still needs guidance from time to time. Unfortunately, Geoff didn't go home, and I ended up dealing with the kids more than I should have for my night off. (Silly me. Moms don't get the night off.) This resulted in my going home and yelling at my family about being self sufficient and responsible.

Afterward, I went to bed crying about how I was an awful mother. I was definitely having a roller coaster of a night. Because of this, I woke up Thursday feeling horrible. I was tired and achy again. Nonetheless, I picked myself up and went to work, and I woke again today feeling tired and achy. I also couldn't get my wedding ring on because my fingers were swollen.

When I got into work, I decided to drink some Yogi Tea Peach Detox thinking that would help with the swelling. My friend at work, Rachael, has a tea kettle at her desk, so I went over to ask her for some water. Rachael was in such a great mood, somehow her mood rubbed onto me, and I feel better now. I do still feel tired, but the general achiness is much better. Or maybe it was the detox. I think it does have a lot to do with mood because I am feeling pretty happy. Sleepy, but happy.

Therefore, I want to emphasize the importance of happiness. First, I want to say that lupus is tough. It can come along with a variety of psychological symptoms, even the steroids have been known to cause severe mood changes and panic attacks. Because of this, the concept of happiness is difficult for people to comprehend at times. Nonetheless, we need to work at being happy, and believe me, happiness is work.

1. Find happy people. As I mentioned earlier, Rachael's happiness improved my mood. We should all endeavor to be around happy people to make ourselves happy.

2. Read happy books. Find funny books at the bookstore or the library. I used to really get a kick out of Irma Bombeck.

3. Watch funny shows. And I don't mean ridiculous reality shows where the people are doing things so stupid it's funny. I believe those things actually tear away at your emotions instead of build you up. Try watching situation comedies or stand-up comedians.

4. Funny movies. Nothing cracks me up more than "There's Something About Mary".

5. Think happy thoughts. Try to remind yourself of the good things in your life such as family and friends. If you don't have family or friends, think of the things you have within yourself, like your brains and your fortitude. Even if all you have is a roof over your head, be grateful for that. If you have nothing at all but your life, be happy that you have a life with the potential for great things. Everyone who's living has that.

Well, I hope I've left you with enough happy lupie possibilities. Have a lupie day.


Saturday, January 17, 2009


Since my birthday is two weeks before New Year's day, I usually start my resolutions on my birthday. This past birthday, I turned 40, so it was important for me to do something special. This year I resolved to celebrate life and be happy. In going along with this theme, I went to Disneyland, the Happiest Place on Earth. As you can see from the pictures, I was very happy. Also, in keeping with this theme, I decided that I was going to spend more of this year focusing on my happiness. With my son turning 21 this year and my daughter graduating high school and heading off the college, I felt this was a good time to make focusing on me my goal. Sometimes, I feel like I've spent my whole life being a mother. My mother was diagnosed with cancer when I was ten years old while she was pregnant with my youngest brother Victor. He was my responsibility. Then I had started having kids at 19. My whole focus has been my kids, so I never did the things that most twenty year olds did, so with this birthday, I decided fun would be my theme.

My husband and I went out last night, and when we got home at about midnight, our son asked my husband about dinner. My husband told me it took all of his control not to yell at the boy. I just laughed and shook my head. I know that I often say to my son, "Julian. You realize that when I was your age, I was feeding not only myself, but you! Get your own dinner. You're a grown man." Usually, he gives me this expression of "Oh yeah. I forgot. Sorry." and he shrugs and heads off to the kitchen.

In my son's defense, I spend many nights cooking for them, but he knew that we were going out last night. We actually invited him to join us, but he begged off. You'd think that since we weren't home at dinnertime, that he'd figure out that he was on his own for dinner, but nope. Hopefully when my son goes off to college in September, he won't forget how to feed himself.

Have a Happy Lupie Day!


Tuesday, January 13, 2009

Staying Healthy When Everyone Around You is Not

It's flu season, and this can be a very trying time for a lupie. The flu can send you into a flare or can make you sicker than the average flu sufferer. It may be tempting to lock yourself in your house until the flu season passes but for many of us, that's just not realistic, so here are a few things I do to keep myself flu free.

1. Stay away from sick people and the areas where they congregate. At work, I watched everyone in my work area come done with the flu in a matter of a few days. I was the only one who escaped it. I kept my distance. There was a point after New Year's when they were all sitting in a circle talking about their holiday. I stayed on my side of the cubicle and yelled comments over the wall. Also, I stayed out of the kitchen. Almost everyone at work goes into the kitchen, so your chances of picking up something there are pretty high.

2. Use hand sanitizing solution often. I use it whenever I return to my desk. That way if I touched something while I was away from my desk, I'm protected.

3. Touch no one. I have been taken down many a season by hugging someone only to pull away and experience their germ infested cough heading in my direction. At the most, just try to shake hands and then use your hand sanitizing solution as soon as you can without seeming rude. I usually tell people a little white lie to the effect of, "I think I may be coming down with something." That usually keeps them off me.

4. Don't be nutritionally deprived. If you take vitamins, make sure you take them. At the least, eat a well balanced diet. It helps to keep your immunities up.

5. Exercise. Exercising helps your body fight illness. If you exercise at the gym, make sure you wipe down machines to avoid germ contact.

6. Sleep. Most importantly. Get plenty of rest. Lupies need more rest than most, so make sure you have a well rested body to fight off those germs!

7. Don't stress. Many seasons I've let myself get really upset about something only to wake up the next day with the flu. Take a deep breath. It's usually not as bad as you think it is at the time.

Here's hoping you have a healthy lupie flu season.