Tetanus Blech!

This week has been a pretty busy doctor's week for me. I had a sleep study done on Monday because my doctor in L.A. was concerned about my extreme sleepiness. She thought that it was possibly narcolepsy. It turns out that I do not have narcolepsy, but that I wake up something in the neighborhood of 82 times a night. As such, I'm just not getting enough sleep. My sleep doctor is prescribing Ambien. I'm a little worried because of the possible side effects. I could start sleep walking or sleep eating. I eat enough without adding night time sleeping into the mix. Who knows where I'd end up sleep walking?! Geoff will probably end up picking me up from some all night bowling alley while I'm dressed in a teddy or footie pajamas. I'm definitely going to start wearing pj's I won't be afraid get caught in public in. I'm also worried because I'm hyper-vigilant. If I'm asleep, who is going to get Geoff and me out of here in case of a fire, or who's going to fight off unknown burglars? Geoff sleeps like a stone. We're just goners. It has me frustrated. I mentioned my concerns to Geoff, and all he had to say was, "Did you ever consider that it's thinking like this that's caused this sleeping problem of yours?" He's just no help. Seriously, I shouldn't worry so much about the side effects. The doctor told me that side effects were very rare.

I start school at Saint Louis University in about a month, and I had to go to the doctor for booster shots and a physical on Thursday. She gave me a tetanus shot. I hate tetanus shots! Every time I get them, I end up feeling like crap, and this time is no exception. I have a fever and pain in my back, knees, wrists, and of course, on the injection site. The injection site is swollen such that that it is something like four inches in diameter, and it is itches like a son of a gun. I've put ice on it and Benadryl cream. I have also taken Vicodin for the unbearable pain. I called the 24 hour nurse line that I have with my insurance company. She told me that I should not take Benadryl orally because of the Lyrica I'm on and the Vicodin I took. She recommended that I try cortisone cream. I will go out and get some later today.

In lupus news today. Cheers goes out to New York State Senator Joseph A. Griffo who co-sponsored a bill to support lupus awareness and education. The bill has passed in the legislature. Now he is pushing Governor Paterson to sign it. You can read more about Senator Griffo at NorthCountryNow.

That's it for me today Lupies. I'm going to ice my arm and try to sleep off the effects of this tetanus shot.

Have a lupie day!

LupieKat

Love Simple

Today I'm feeling pretty down and out. I was up most of the night coughing and wheezing, and I woke up in full fledged pain. I've rubbed my joints down with Walgreen's ice blue gel, and I've started my regimen of prednisone, so hopefully I'll feel better soon.

I feel so guilty right now because I forgot to tell my husband happy Father's Day. Instead, I sent him out to get breakfast and didn't remember until I after I ate. I apologized, and he just smiled and said that's okay. I said, "I'm the worst wife ever." He said, "No. You just have lupus." What's even funnier is that I thought Father's Day was last Sunday and gave him his presents then. I'm just completely off, but I guess that's what he gets for marrying a lupie woman.

I just downloaded and watched the movie "Love Simple" through iTunes. I loved it. The main character is a woman with lupus who meets and falls in love with a guy who is taking care of his ailing father. The movie addresses some of the many stresses of being a woman with lupus and the guilt and anger associated with it.

It's definitely a great lupie movie. If you can, download it from iTunes by June 21st. Thirty percent of the proceeds go to the Lupus Foundation.

Have a Lupie Day.

LupieKat

Sick 48 hours

I haven't been feeling too well for the past couple of days. The cause could be one of two things or two things. On Thursday night, I went to see Shakespeare in the park, and I was bitten about a dozen times by mosquitos. The bites puffed up pretty severely. In reading about mosquito bites and lupus, I discovered that many people with lupus have severe reactions to insect bites. Growing up in Los Angeles, I never really had to worry about mosquito bites, but now that I live in Missouri, it is something I need to think about when I head outdoors.

Friday morning, my daughter and I went out on our run together. I was wearing sunscreen, and it was early morning, but the sun really bothered me. I think my sunscreen might have been expired. Let this be a reminder to my half dozen readers out there to get new sunscreen.

Friday night, I was achy and had a fever. Yesterday, my ankles were really swollen, and I woke up this morning pretty stiff.

I told myself that I was going to stick to my exercise schedule no matter what. Today is my jogging day. Even feeling bad, I thought I'd just move a bit slower than usual. It worked out pretty well. I actually jogged farther than I did on Friday. The swelling actually went down some. I think the sweating from the exercise helped.

I read in the Nashua Times about Kevin Kalhori, a lupie who is cycling across the country to raise lupus awareness and money for the Lupus Foundation. Kevin's story is the same as most of us who have to deal with lupus. He has spent days stuck in bed. He's done the chemo and the steroids.

I've gone from being bedbound to running a bit over a mile. Even so, I cannot imagine bicycling across the country. I think I would be worried about all the things that could go wrong when dealing with something like lupus, but Kevin has faith in himself, and sometimes, that's all that you need.

If you want to follow Kevin Kalhori's travel across the country by bicycle, check out his Live Free and Ride blog.

Gaga Over Lupus

An article just came out on LimeLife.com that says that Lady Gaga confirmed having borderline lupus. I wonder if this means that having lupus is going to become one of those celebrity fads like adopting children from foreign countries? Lupus can definitely use the attention. Many people suffer from lupus and if it helps foster awareness and understanding, that will be a great thing.

I'm pretty excited right now because I just completed my 39th day on my Wii Fit, and I feel tremendously better. Actually about a week ago, when I was using the Wii Fit running feature, I noticed that I had run over a mile and a half, and I thought to myself, "Hmmm. I wonder how that transfers to real world running?" I tossed on my athletic shoes, strapped on my heart monitor, filled up a bottle with water, asked my daughter (an avid runner) to tag along in case something went terribly wrong, and hit the running trails of Forest Park.

We took it very slowly. My daughter said that when you're starting off, it's better to run a little and walk a little, so we would run for a minute and a half and walk for a minute and a half. Today, I'm happy to report that I managed this for 1.888 miles, and this is my third attempt in a week. The first attempt I ran a little over a mile and the second attempt about a mile and a half. I'm very excited considering that I haven't run prior to these times in over 20 years when my doctors told me I couldn't run again.

I still have a bit of pain everyday, but I realized that pain is just a part of my life. I can either be in pain with a fit body or in pain with an unfit body. So no matter what, I drag my tail out of bed everyday to get on that Wii Fit.

My last post said that I fantasized about running a marathon. I think because of this, my daughter has it in her head that I can do this by summer's end. That is a bit of an ambitious endeavor I think. I will be happy if by the end of the summer I can run for a continuous five minutes without needing to take a walk break.

Exercising With Lupus

There's an article in USAToday.com featuring Jane Fonda who is promoting Saturday's World Fitness Day. Reading this article got me to thinking about my many attempts throughout the years to be fit. I often fantasize about being this fit woman who runs marathons, bicycles mountain paths, plays tennis, and goes white water rafting.

In reality, I'm lucky to get out of bed to make it to the shower many mornings. Morning is the single most unpleasant part of my day. The other night, I attempted to stay awake all night just to avoid the feeling I get when I wake up in the morning. I didn't quite succeed at that. When I wake in the morning, everything hurts. Then when I stand to get out of bed, it feels like I'm standing up from a steep fall off a cliff where I damaged every part of my body.

Yet given this, I still hold on to that fantasy, and I attempt to exercise everyday in order to be that fit, active woman. I don't succeed in exercising everyday. I wish I could be one of those motivational lupus people that you read about or see on the news who exercises everyday or accomplishes some monumental feat. It's just some days, I don't have the mental capacity to do it.

I was most successful when I had a trainer. I would call him up on some mornings and say, "I'm just feeling too achy today, and he'd say, "No problem. We'll just take it a little easier in your workout today." I'd mumble and agree. I hated him on those days, but usually in the end, I felt better.

I don't have my trainer anymore which means many days I find it hard to get motivated to exercise. I got a Wii Fit for Christmas, and I just opened the box this weekend. I love that thing especially the yoga feature. In yoga classes, I often felt self conscious because I'm not as advanced or fit as the others, and I often had to explain my many problems to the instructor. With Wii fit, I don't have to explain anything to anyone. I just work at my own pace.

Working at your own pace is very important with lupus. An overly excited trainer of instructor can send you into a lupus flare faster than your next push up. It's very important to listen to your body.

How do you motivate yourself to drag your achy body out of bed to exercise? Just keep telling yourself, "This will help me feel better." At first you may feel awful, but personally, I found that once I got conditioned, I felt great after exercise.

Have a Lupie Fitness Day!

LupieKat

It Might Be MS

So yesterday, I went to the doctor for a follow-up on the last visit I had where she put me on bed rest. I thought it would be a pretty routine visit because while I'm still exhausted and achy, I didn't expect much more than a medication adjustment (which I got by the way).

Well while I was in the doctor, I got one of these painful spasms that I've been having for years. I know I've mentioned them to doctors before but no one pays much attention because of all the other things I have going on. After I had the spasm, the doctor says, "How long has that been going on?" I respond, "I don't know. Years." She asks, "What does it feel like?" I respond, "I don't know. Painful! Like someone's electrocuting me."

"Have you ever had an MRI of your brain?"

"Yes."

"What did they find?"

"I was told it I had plaque on my brain. Typical lupus brain."

"Hmmm. I don't think so because lupus brain goes along organ involvement you don't have. I'm going to run some tests and send you to a neurologist."

And here's where you find me, needing to go in for tests and being slow about accomplishing that today. Last night I read about MS and it's symptoms. I do have a lot of the symptoms (spasms, tremors, ocular abnormalities, tingling, loss for words, talking very slowly to prevent stuttering), but I have symptoms that match half the conditions in the world, it seems. However, most markedly, I remember a time a month ago when I got home from school at about 10 o'clock at night, and I stepped out of my car and couldn't walk. I had to get help to get to my apartment. The next morning, I was all better.

The frustrating part of the whole thing is that I'm moving to St. Louis at the end of the month, but the doctor is telling me she doesn't want me to leave town until she figures this out. I started off this blog thinking, "I'm okay. No big deal. If I have MS, it doesn't make me any worse off than yesterday." From what I read, it's not hopeless. People with MS go on to live long lives. While the intellectual part of me knows all the facts and statistics, the emotional part of me is very sad.

I'm just tired of it all being so complicated. Anyway, I better get my tail in the shower. Later lupies.

Bed Rest

Hi Lupies:

I've just been plain overwhelmed the past few months. With work, school, and the kids, I've just had absolutely no time. Whoever says that your job with your kids ends when they turned 18 lied.

It seems that since I couldn't slow myself down, the doctor decided to do it for me. I'm on bed rest for the next two weeks. Bed rest is tough for someone as hopped up as I am. If I weren't feeling so crappy, I'd argue with it. As it is, I'm sleeping over 12 hours a day. Hopefully, it will get better within the next two weeks.

From what I can tell, I have two things going on. A few weeks ago, there was a cold going around the office, and about that time, I got a sore throat and just started feeling tired and achy. While the sore throat has gone away, the tired and achy feeling never did. That's also about the time that I started spending every extra minute of my day sleeping. This pretty much likely means that I'm now in a lupus flare.

Also, I started having pain in my right side on Thursday. I saw my doctor on Tuesday, and that's when she put me on two weeks bed rest. She also sent me to the emergency room for tests to rule out appendicitis and kidney problems. My organs are fine. I have a dilated ureter on the right side. My doctor said that probably means that I just passed a kidney stone, and that's probably why I have the pain.

I still have the pain though. It woke me up this morning. I haven't taken anything for it because I don't like to wake up in the morning and take pain meds. I used my heated massager, and that helped some. Now, I'm just hoping to keep myself distracted until the pain becomes unbearable or goes away.

Part of me feels that I just pushed myself way to hard. In the next few weeks, I'm going to think about ways to simplify my life. I can't do everything. It's just not lupie friendly to be superwoman.

Take care lupies!

LupieKat

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!

LupieKat

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.

LupieKat

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 PriceGrabber.com. 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.

PriceGrabber.com 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

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!

About.com 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.

LupieKat

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.

LupieKat

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.

LupieKat

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.

LupieKat

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.

LupieKat

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!

LupieKat

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!

LupieKat

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!

LupieKat

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!

LupieKat

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!

LupieKat