Living Lupie

Tetanus Blech!

2010-07-24T05:45:00.000-07:00

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

2010-06-20T08:12:00.000-07:00

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

2010-06-06T09:06:00.000-07:00

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

2010-06-02T07:28:00.000-07:00

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

2010-04-26T13:05:00.000-07:00

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

2010-03-17T07:55:00.000-07:00

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

2010-02-18T06:16:00.001-08:00

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

2009-12-27T09:50:00.001-08:00

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

2009-12-10T11:12:00.000-08:00

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

2009-11-27T09:49:00.000-08:00

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

2009-11-24T06:47:00.000-08:00

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

2009-07-14T07:08:00.001-07:00

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

2009-06-30T08:54:00.000-07:00

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

2009-06-08T05:57:00.000-07:00

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

2009-05-30T08:03:00.000-07:00

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!

2009-05-22T08:19:00.001-07:00

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

2009-05-20T05:26:00.000-07:00

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

2009-05-10T18:56:00.000-07:00

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

2009-05-05T07:23:00.000-07:00

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

2009-04-25T11:38:00.000-07:00

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

Some Good Stuff

2009-04-23T06:38:00.000-07:00

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

This Condition Some Call Lupus

2009-04-20T19:32:00.000-07:00

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.

Thanks.

Have a lupie day!

LupieKat

Wear Something that Makes You Smile

2009-04-16T12:19:00.000-07:00

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.

LupieKat

It's Opening Day!

2009-04-13T08:51:00.000-07:00

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!

LupieKat

Is it Your Birth Control?

2009-04-09T13:58:00.000-07:00

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!

LupieKat

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

2009-03-24T19:49:00.000-07:00

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.

LupieKat

I'm Disabled. So What!

2009-02-22T12:30:00.000-08:00

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.

LupieKat

Too Lupie, Be Happy

2009-02-06T14:22:00.000-08:00

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.

LupieKat

Resolutions

2009-01-17T09:44:00.000-08:00

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!

LupieKat

Staying Healthy When Everyone Around You is Not

2009-01-13T07:47:00.000-08:00

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.

LupieKat

No Empathy From Me

2008-12-16T07:39:00.000-08:00

I spent the past week sick in bed. This had me a little blue because I'm going to be 40 on Thursday. There are a few things I wanted to do for and by my 40th. I wanted to surf by my 40th birthday, which I had hoped to do this past weekend, but I was too sick. I also plan to celebrate most of the week, and I plan to go to Disneyland.

My body, on the other hand, had other ideas. I woke up last Thursday, and I couldn't put weight on my feet because the pain was so bad. I ended up going to my rheumatologist and she gave me an injection of steroids. She said I should start to feel better by Monday. Of course, I was Ms. Negative, thinking that it wouldn't work, and I'd feel that way for my birthday.

Geoff has a rowing machine, and he's really excited because he's trying to row for the Concept 2 Holiday Challenge. In this challenge he gets a tee shirt if he rows 200,000 meters. I know he loves his rowing machine, and I know he's very excited, but I don't want to hear about his aches and pains when I'm feeling so miserable. I know that it's wrong of me to feel that way, so I try my best not to be moody with him when he complains.

At some point over the weekend, he was talking about his rowing and how he got a blister on his hand. (I should point out that when my husband gets a paper cut, I hear about it half the day.) Anyway, he was pointing out this blister and describing the pain it was causing him, and I was thinking to myself, "You've got to be kidding me! I can't walk here!" I think what actually came out of my mouth was something to the effect of "Uh huh. I see." He responded, "Are you upset with me? Your toned seems resigned." I said, "I don't feel well Geoff." He then said, "Are you sure?" I then told him that honestly, I didn't want to hear him go on and on about his blister. That I was miserable and couldn't walk, and a blister on his hand seemed minimal in comparison. Especially since he got it rowing several thousand meters in a day, when I can't even think about standing up. He responded, "But the blister hurts." Then he said, I'm sorry you're not feeling well. I know it must be hard on you, but the blister really does hurt. I just rolled my eyes.

Empathy is pretty hard for me when I'm not feeling well. I know that's hard on my family because Mom/Wife is supposed to be empathetic, but my children are grown and nearly grown. My husband is definitely grown. They need to suck it up. I often do. As you can see, I'm not doing too well on the empathy thing right now.

Anyway, my rheumatologist didn't lie to me. I was able to walk on Monday. I'm still moving a bit slow, and I feel run down, but I'm hoping to be better by my birthday. Overall I feel lucky to be here to complain.

Have a lupie day.

LupieKat

Keeping Warm Lupie Style

2008-12-09T07:19:00.000-08:00

I was going to write about how Geoff and I celebrated our 17th wedding anniversary this weekend, but then I read a post about a cold lupie and decided this post would be better served talking about keeping warm.

I think lupies are more susceptible to pain this time of year because it is so darn cold. It is very important to keep joints warm especially those hands and feet. Here are a few things I do to keep warm.

1. Wear gloves. Especially when you go outside. If you find that your hands get cold at work, and you do a lot of typing, get gloves and cut the fingers off. I also put a heating pad under the wrist that I use to mouse. For some reason that wrist gets cold. Also, when you're shopping wear gloves to help you grab things out of the freezer section. Especially if it hurts your hands to touch cold things.

2. Use a blanket. I carry a blanket with me practically everywhere I go. I used to feel really self conscious about it at work, but now it seems like I've started a trend because others are doing it too!

3. Wear booties, socks or slippers. I have slippers under my desk at work that I wear when I'm going to be sitting in one place for long periods of time. I also keep an extra pair of warm socks in my desk.

4. Sweaters are your best friend. Sweaters are great, especially at work. You can toss them on without looking completely inappropriate.

5. Get moving. Moving around vigorously is the one thing that helps the most when my joints get cold. Take a quick lap around the office to warm things up if need be.

6. Heating pads. Heating pads are wonderful. They can be a quick fix to cold areas of your body. There are also heating pads that you can toss in the microwave if you are short on places to plug in.

7. Wear a hat. My husband constantly reminds me that most of your body's warmth escapes through your head, so make sure to wear a hat.

These are my lupie methods to keeping warm. Feel free to add your own. The picture above is of me in Palm Springs at the top of the aerial tramway. I'm dressed very warmly. I'm also wearing sunglasses to protect my lupie eyes.

LupieKat

T'is the Season for Infusions

2008-11-20T11:09:00.000-08:00

I started my first infusion treatment yesterday. I am relieved that it took the nurse only two tries to find a vein. I can tell by the way she treated me that I didn't treat her too warmly. Note to patients: Try to be bright and upbeat no matter how terrible you feel. If you aren't, the nurses take it out on you. In my many years of medical interactions, I've found that the nurses treat you better if you try to be peppy.

Yesterday, I really didn't want to be peppy. I hate infusions. I was close to blowing up at Geoff but he backed off before it was too late. (I think he's finally learning.)

In case you're new to my blog, I have to get iron infusions from time to time to keep my iron stores up. I'm allergic to iron infusions, so the whole experience makes me miserable. In order to get the infusion, I take it with steroids and benadryl. It makes me sleepy and feel sluggish for the day. Additionally, I'm in pain. I get pain in my chest and pain in my joints.

A good thing about this round of infusions is that I have a good set of people to give me rides home. That was the biggest challenge with my last set of infusions. I've been working on developing friendships and support. This helps me feel less alone in the whole procedure.

Unfortunately, my favorite driver has moved away to the Midwest. I really do miss Melinda. She needs to get out of that snow and come back to the warmth and love of California.

Take care and live lupie.

LupieKat

Forget about lupus

2008-11-16T09:22:00.000-08:00

My husband, daughter and I are in Phoenix, Arizona for the weekend. We're heading home today. I look forward to being home. This morning, my husband Geoff came out of the bathroom a bit upset because he had gone into a dark bathroom, reached down to lift the toilet seat, but because I left the lid up and the hotel bathroom is an unusual one, he stuck his hand straight into the toilet. What does this have to do with lupus, you may ask? Absolutely nothing. I thought I'd just share this story of retribution for every woman who has sat her butt in a cold toilet bowl full of water in the middle of the night because of a husband forgetting to put the seat down.

Yesterday, I went to a party, and people were sitting in a circle on the floor. When I sat down, I realized that the cold tile was very hard and very uncomfortable. Feeling as lupie as I've been feeling the past couple of days, I sort of grimaced. Someone asked me what was wrong, and I explained that the tile wasn't as comfortable as I'd thought. I really didn't want to talk about lupus yesterday, so it took a bit of verbal gymnastics for me to avoid the topic. By the end of it, I felt like a whiner, but oh well. I just didn't want to talk about lupus at that party yesterday.

With the pain that we tend to be in most of the time, it's hard to forget that we have lupus, but we should all live one day where we try to remove lupus from our consciousness. Instead of thinking, "I can't take a walk very far because I have lupus", think, "I'm going to walk for as much as my energy allows." Once you've spent the day trying to take lupus out of head, contemplate on that at the end of the day. How did your actions change? How did your interactions with your family and friends change? How much does thinking about lupus affect your life?

My family is ready to go. Time to check out of this hotel and head home.

Have a Happy Not So Lupie Day.

LupieKat

On the road again

2008-11-15T06:48:00.000-08:00

I took off for San Francisco on Sunday for a Women in Leadership Summit. It was a great summit. I was feeling so down last week for all sorts of different reasons, but now, I'm doing pretty decently. It was odd. When I left for this summit, I was feeling a bit overwhelmed because I didn't see myself as good enough to be with these women. I see myself as just a pretty simple person.

At one of the conferences, a speaker said, "You're a leader if you do something that makes a change." I thought about that. I may not be a CEO of a Fortune 500 company, but I often do things that make changes, so I guess I'm a leader after all. We went to another conference where we were to determine our leadership style. At this conference I found out I was a visionary. Wow. Me. A visionary. That made me feel really good. After that workshop, the facilitator came to me and said, "You're amazing." I appreciated that a lot considering how I was feeling about myself before then.

I met so many amazing women. It was very inspiring. That's my advice for the day. Try to meet new people. Find something that interests you and see if there are a group of people getting together to discuss this issue. It's always good to get out and broaden your world.

Have a lupie day.

LupieKat

Healthy Eating

2008-11-06T08:12:00.001-08:00

I just got a notice from the Lupus Foundation of America stating that there will be a live web chat on healthy eating and weight management. It's going to be on November 12, 2008 at 3:00 p.m. Eastern. For more information, you can go to the Lupus Foundation of America web site

Before I was diagnosed with lupus, I was pretty thin. I didn't think I'd ever have to worry about my weight. Then I got an esophageal infection that caused me to lose more weight. I was petrified that the infection was going to take over my body because my doctor couldn't figure out how to fight it and keep my weight on. I got really skinny and sicker and sicker, and then one day, it just went away. Oddest thing.

Because of that, I worried about being thin so I went on an eating binge. That combined with prednisone turned me into a chubby looking chipmunk. I'm off the prednisone, but weight has been a challenge for me ever since. I wish I could tell you all that I'm a great example of healthy eating, but that would be a lie.

I can say that I try very hard to stick to a healthy eating pattern, but my cravings often get the best of me. When they do, I vow to exercise a little bit more the next day, and sometimes I don't do that either. Yesterday, I had this plan to go to Islands Burgers with my husband and get a salad, but he didn't meet me for lunch until it was really late, so we ended up running to InNOut Burger who only sells burgers.

I told myself I'd get extra exercise by playing tennis, but my tennis partner canceled. That pretty much blew my healthy living day.

Fortunately, today is a brand new day. I'm going to bring healthy snacks to work and stay away from the burgers!

Have a lupie day!

LupieKat

What helps?

2008-11-03T12:04:00.000-08:00

I received a response to one of my posts asking if acupuncture helps. It got me to thinking that it's hard to point to just one thing that keeps me going. My pain management has been a long active progression through many years. I have noticed that each little thing makes me a little bit better. One little thing that I've been working on lately is an adjustment in posture.

The last time I saw my acupuncturist, he told me that I had tension in my shoulders from looking down a lot when I read or look at the computer, and that I needed to try to stop looking down so much.

Yesterday, I was volunteering at the Obama phone banks by calling as many nice people in New Hampshire I could manage, and I started to get pain in my shoulders. Sure enough when I thought about it, I realized that I had been staring down at a clipboard. I adjusted the clipboard such that I stared straight ahead and my pain improved immensely.

Managing pain is a diligent job. We have to watch many things. We have to watch what we eat, how we sit, medications, and exercise, just to name a few. It's hard to just choose one thing, and we often have to try everything before we see relief.

Have a lupie day.

LupieKat

Is it depression or the blues?

2008-10-30T07:13:00.000-07:00

I've been feeling a bit down for the past couple of days. When I feel down like this, I struggle with thoughts of suicide or self-injurious behavior. I don't know why I get like this. I just feel so sad and alone. A few years back, but therapist and I put together a depression plan. A depression plan is a long list of things I like to do. I pick things from the list and do them until the feeling passes.

The problem is that it's been so long since I've felt this way that I can't recall where the list is. I'm going to play tennis with Ellen, a friend from work, after work, so that's one thing. I'm going to head into work in a few. That should help keep my mind occupied until tonight. Then it's just a matter of getting myself to sleep.

Take care.

Live lupie!

LupieKat

Managing the Pain without Painkillers

2008-10-22T14:06:00.000-07:00

I've been able to get along for the past several weeks without the need to take the heavy-duty pain meds. I think this is mostly because of self concious self massage. I've been going to acupuncture treatments once a week, and I have to say that I think it's working because in addition to the treatments, I get training in self maintenance. I was a bit dubious when I started this process, but I can't argue with the fact that I'm feeling better.

Right now, I have some sort of seed in my ear. My acupuncturist put it there. He said it would help with inflammation. I should point out that it's not directly in my ear as much as on my earlobe. I feel like Dumbo with the magic feather.

I think a lot of my pain management has to do with maintaining a steady blood flow. When I move around rather rigourously such that my heart rate goes up a little bit, my pain goes away.

I also keep a massaging heating pad with me at work, so that if I start to feel pain, I can see to it immediately. When I'm in a position where I can't use the heating pad, I'll apply Mineral Ice. It's great. It's a little stinky, but it works.

Finding the Lupiest Candidate

2008-10-15T07:11:00.000-07:00

Personally, I know where my vote is going for president, but I thought it would be cool to do research in order to write how the candidates fair for lupies. In researching this issue, I found myself fairly disappointed. First I went to the respective web sites for Senators John McCain and Barack Obama. Senator McCain does have a fairly extensive plan for health care. I would think it is a pretty decent plan if not for the fact that Senator Obama stated that the funds provided for purchase of health care in Senator McCain's plan would be taxed. That bothers me.

Senator McCain mentions chronic conditions on his site. He says, "By emphasizing prevention, early intervention, healthy habits, new treatment models, new public health infrastructure and the use of information technology, we can reduce health care costs." I'm concerned there isn't a mention of any particular plan to promote this. I am heartened by the fact that he states more money should be dedicated to research.

Senator Obama has a pretty detailed plan on his disability policy. A lot of it has to do with children and early screening. He does mention a pretty interesting policy on helping those with disabilities obtain higher education. He also voted for the Individual with Disabilities Education Amendment. This one resonates with me because I've been working on my Bachelor's degree for longer than I care to mention. It has been very difficult because if I go into a flare, it is nearly impossible to keep up with classes. Sometimes I get understanding professors, but most of the time, I don't.

Also, Senator Obama supports Universal Healthcare which would be beneficial for lupies who have problems obtaining health care.

In checking Project Vote Smart at I found that Senator Obama voted for stem cell research two out of three times. Senator McCain voted for stem cell research all three times.

Who should lupies vote for? I think it depends on your priorities. If you're a lupie who isn't working and on disability or if you work part-time and can't afford health care, your better vote would likely be for Senator Obama. His health care plan would likely be better for lupies who have a problem affording health care.

If you have a job and health care and your main concern is finding a cure and a better way of dealing with lupus, McCain would likely be your guy. I'm not certain on this, but McCain in my opinion would more likely support research. I say this only because I don't know Senator Obama's position on this.

If rights for people with disabilities is your issue, go with Obama. He is a strong supporter for rights of those with disabilities. I think that overall, the better candidate for lupies is Barack Obama. He speaks to the issues that the majority of people with lupus face.

Take care. Vote smart. Live lupie!

LupieKat

Household Help

2008-10-13T10:11:00.000-07:00

Last week, I was talking to my sister, the coolest lupie ever, and she told me that she's getting someone to come in and help clean her house. She said that it was a special service through some government facility for the disabled. I thought this was pretty great.

Many lupies have a hard time cleaning their homes. Not even considering the pain aspect of bending over and lifting things, there's the breathing factor with using all the chemicals necessary to have a clean and sanitary home. I, myself, can't use any kitchen or bathroom cleansers without sending myself into an asthma fit.

I hire a housekeeper to come in once every few weeks to clean my bathrooms and kitchen and to do some vacuuming. If you can't afford something like that, try looking into what sort of public assistance is available for the disabled in your area.

What it takes

2008-10-09T09:06:00.000-07:00

As you can read from yesterday's blog, I was having dizzy spells. Whenever I have an unusual health problem, I do what any conscientious lupie should do. I make calls. I don't like to bug my doctor unless it's absolutely necessary, so I call the nurseline, which is a feature of my United Healthcare insurance. I can call the nurse line and ask them questions about pretty much anything health related.

So I call the nurseline, and we have a nice little chat about my symptoms. The nurse tells me I should page my doctor. I told her that I felt fine aside from the dizziness, and she said it was best just to page the doctor, so I did. My doctor tells me he wants to see me first thing in the morning to look me over. I tell my husband that I have to go to the doctor in the morning and I tell him the time.

The next day, my husband pretty much is a jerk about driving me. He doesn't want to drive me. He thinks I can drive myself. He says he has to get to work. We both work at the same company which is a very understanding company. If he says he's taking me to the doctor, absolutely no one would have a problem with that. I said that I didn't want to drive myself with dizzy spells. He said I shouldn't have a problem. I pretty much forced him to drive me.

Today, he tells me that he believes I over reacted about the dizziness. I don't see how I did considering I did exactly what I was supposed/told to do.

When he says things like that, I honestly believe that he doesn't understand what it takes for me just to get through a day. I know that in many ways I'm lucky. I'm not as bad off as other lupies such as my sister, but it still isn't easy. Every day, I'm in pain. I deal with rashes, asthma, anemia. Infusions two times a week for months at a time aren't easy. The myriad infections, endoscopies, colonoscopies.

Every single day is an effort. I force myself to be positive and have a bright outlook, and for my husband to think/treat me that way just hurts.

Well, as you can see, I just needed a good vent. Now I need to get back to work.

Have a lupie day!

LupieKat

Feeling Dizzy

2008-10-08T15:19:00.000-07:00

So, I've gone from itchy to dizzy. There should be a set of Lupus dwarfs like the dwarfs in Snow White. There should be Itchy, Dizzy, Sleepy, Achy, Rashy, Foggy (as in foggy brained), and Moony (because he's allergic to the sun). It took me a while to think of that one. My first thought for the name of that one was the opposite of light. To avoid obvious racial implications, I went for Moony.

So today, I'm dizzy. It actually started last night when I was driving home from work which is a scary thing. I didn't know what to do. Do I pull over? And if I do, then what? Do I call someone to pick me up? Do I wait for it to pass? I was at a loss. Finally I just soldiered on through and made it home with no incident, but I was worried the whole time.

I called my insurance company's nurse line. I often call the nurse line in order to avoid being a nag with my doctor. If the nurseline tells me to call the doctor, I will. I called my doctor, and he asked me to come in this morning. He looked me over and determined that I likely have an inner ear infection.

This means no driving for me until I feel comfortable that the dizziness has subsided. My husband seems to think I can still drive while dizzy, but I just don't think it's a good idea. I think I will avoid getting a DWD. (Driving While Dizzy).

Take care all and Live Lupie!

LupieKat

Feeling itchy!

2008-10-06T22:48:00.000-07:00

Last week, I was down with a cold. Actually, I couldn't figure out if it was a cold or the tetanus shot I had the week before. I don't react very well to tetanus shots. The one I had ten years ago got me pretty sick. My arm broke out into a rash and I had a fever and asthma on top of it.

This time, my arm didn't get rashy, but I had a large hard lump in the injection site that was about six inches in an oblong diameter. I then got sick with the cold. It was a tough cold. Had a hard time shaking it. I'm still feeling pretty tired from it, and today, I've broken out in a rash from head to toe.

I just took some Benadryl. Hopefully, that will help settle down the rash. I'm itchy and miserable, so I think I'm going to cut it short and try some meditation.

Just another part of living lupie!

LupieKat

Lupie Sister

2008-09-29T17:43:00.000-07:00

I spoke to my sister recently, and she isn't doing too well. She's about sixteen years older than I am, and she has lupus too. I think the whole thing may be getting the better of her right now. She really doesn't have energy to talk. She's suffering from congestive heart failure, and her kidneys are giving her problems as well.

I feel really scared for her. I don't know what to do. Part of me feels guilty because I'm on a healthy streak. Part of me feels scared because I'm wondering if I'm looking at my future. They say that no two people have the same lupus, but what if that person is related to you? Are you likely to have the same lupus?

I think the hardest part is that she lives so far away in Texas. If I could go visit her from time to time, it would be easier, I think.

Take care lupies.

LupieKat

Learning to Deal with Periods

2008-09-23T15:25:00.000-07:00

I have grown to realize that my lupus symptoms are correlated with my menstrual cycle. This means that for one week out of the month, I'm just going to feel like crap no matter what I do to try not to.

Now that I've accepted that my period is just going to be a challenge for me, I allow myself to feel crappy for that one week. This means that I allow myself to sleep a little longer, take more breaks in the day, and take pain relievers. I usually don't need them anymore, but around my period, I'm just plain miserable.

I have to say, exercising has given me more energy. It's just my periods I haven't quite overcome, no matter how strong I feel. I'm on my period now, and it hurts to walk, my cheeks are lupus butterfly pink, and I'm exhausted. It's just the way of the Lupie World.

Take care lupies!

Lupie Kat

Lupus and Fluorescent lighting

2008-09-16T06:48:00.000-07:00

Yesterday was a tough day for me. Our company changed offices. I hate changing environments. I suffer from depression, and the one thing that helps me to keep things together is keeping my life scheduled and predictable. Changing offices is something that is completely beyond my control, so it was very difficult for me emotionally.

This is something that should make me happy, and I'm sure it will eventually. After all, the move puts me closer to work. My commute is minimal now. I have a bigger workspace. It's bigger than most offices. It's just going to take some time for me to adjust.

However, with all the great features, I noticed yesterday that the office has unshielded fluorescent lighting. My lupus reacts to fluorescent lighting, so I either need to start wearing sunscreen to work, or I'm going to have to request shielding for the lights above my desk. It bugs me because I hate asking for accommodations, but it is what it is.

Take care.

Live lupie.

LupieKat

Can Hardly Breathe

2008-09-12T06:01:00.000-07:00

I have asthma. This shouldn't be much of surprise considering that many people with lupus often have to deal with a myriad of other symptoms. One of them being asthma. For the past year and a half, my asthma has been making me miserable. I've gone through several tests. My pulmonologist thought that maybe the problem was my dog and the fact that I lived in an old apartment that was filled with pets. It saddened me greatly, but we had to give our dog away. He's living in a nice home close to the beach, but I miss him dearly.We moved to a new pet free apartment, but my asthma is still disrupting my life.

I think it's because my neighbor smokes and the smoke is seeping through the walls. I know that he smokes on his balcony, and that comes through my bedroom window. I've closed my bedroom window, but it still comes through. I've put an air filter in my bedroom and most of the time it helps, but last night, the attacks were coming on pretty steadily. I hardly slept at all.

I think we're going to have to move again to a non-smoking apartment. I hate this because my husband loves our apartment. We live very close to the water, and he likes to watch the boats go by. I wish there were a way to ask my neighbor not to smoke, but he has the right to smoke in his own home. He can't help it that the smoke seeps through.

I'm thinking about writing him a note explaining the situation. It mustn't be pleasant for him to hear me wheezing and coughing at all hours of the night. Maybe he can help me come up with a solution. It can't hurt.

It will be okay

2008-09-09T10:32:00.000-07:00

My friend Tracy called me last night because a good friend of hers has been diagnosed with lupus. It got me to thinking about when I was first diagnosed. I remember feeling relieved. I'd been feeling sick for so long, I was sure that I had some deadly disease and no one would figure out what was wrong with me until my autopsy.

When I was diagnosed, I wanted to thank my doctor. I think I probably did thank him. It's hard to remember. It was so long ago.

When someone gets diagnosed with lupus, that person could feel a whole range of emotions. Tracy said her friend was upset and worried she would die from lupus.

It's very common to be scared and think that lupus is a death sentence. The truth is that actually most people with lupus go on to live a normal lifespan. Lupus in most cases is very inconvenient and uncomfortable but not deadly. The key to successful lupus life management is seeing your rheumatologist or other doctor regularly and following your course of treatment as directed. The prognosis in lupus is mostly dependent on whether or not you have organ involvement.

The key in not being scared is talking to your doctor about your fears. Say to your doctor, "I'm scared this thing will kill me." Your doctor should and will most likely be frank and honest about your condition. In my experience, if something is going to kill you, your doctor will let you know. If your doctor hasn't told you that your prognosis is poor, it likely isn't.

Take care and live lupie!

LupieKat

Stop Writing to Yourself. Write someone else.

2008-07-28T08:59:00.000-07:00

Close to my whole life, I have kept a journal. I believed it to be my one good place to vent. I believed that my journal helped me to express myself and helped me to deal with the world. Now that I think about it, my journal actually kept me from dealing with the world and made me more introverted. Instead talking about how something upset me, I wrote it in my journal. No one ever really knew how I felt about anything.

When I first started this blog, I often wrote about how miserably in pain I was, or how I felt alone. When I did that, a had a whole new set of people show up to support me and let me know that I wasn't alone. I then found that I had less of an urge to write in my journal.

This morning, I was going to sit down and write in my journal how much I enjoyed visiting with my cousins when I went to Louisiana. I stopped myself and decided that I would just write my cousins a letter and tell them how much I enjoyed visiting them. This is much better than writing it in a book that no one will ever read, don't you think?

When you have lupus, it is so easy to cut yourself off from the world because you're tired or in too much pain to deal, but we need to try not to do that. We need to reach out to others to help us deal with the challenges that lupus brings.

So many people tell us the best way to get things off our chest is to write in a journal, but I'm going to say that the best way is to write a letter, or start a blog, or to join a discussion board. Reach out. Let others know how you feel. Find out how others feel. If you know you aren't in this alone, it makes it easier to get through each day.

Take care.

Live lupie!

LupieKat

What Exactly is a Healthy Does of Paranoia?

2008-07-15T15:04:00.000-07:00

Most lupies are immune compromised, and I'm no exception. I've been hospitalized more than once recovering from the flu, so to say that I get petrified whenever the latest bug is floating around the office is an understatement. I often wonder if this is going to be the "one" bug that will get me.

Last week, my workmate Amy came down with some bug that knocked her into bed for several days. Because of this, I was afraid to go to our office Summer party. I was certain that someone there also would also have Amy's bug and would inadvertently give it to me. I thought long and hard about attending that party, and in the end, I decided that while I should be vigilant, I shouldn't let my fear over take my enjoyment of life and people.

I figured that since it was summertime I would be less likely to catch a bug. Also, I was careful to find out how people were feeling before I got too close. It has been a few days since the party, and I seem to be fine. (Knock on wood.)

Amy came back to work today recovered from her flu, and she said, "Now I understand how you feel about germs. I want nothing to do with anyone who might be sick." I said to her, "Welcome to my world."

Take care all.

Live lupie!

LupieKat

Anti-depressants, Anti-Pain, Anti-Social?

2008-07-10T09:54:00.000-07:00

I have been struggling with depression since I was a teenager. At some point in my early twenties I took Paxil and Prozac, and I hated it. I just felt so numb to the world. Since that experience, I decided that I'd just try to deal with my depression naturally. I took up yoga and meditation, and while I had dark thoughts a lot of the time, I found the whole issue with my depression pretty manageable. Over the years, I've had many doctors try to prescribe antidepressants for me, but I always turned them down because I felt that I was handling myself just fine.

About four months ago, my rheumatologist recommended that I take Cymbalta. It wasn't for my depression. She said that it's been found to help people with lupus have less pain. I rationalized that since it wasn't for my depression but for my pain, that it was okay to try, so I did.

I have to say that since I started taking Cymbalta, I'm a new person. I'm genuinely happy. I've never known what it's meant to be happy before. I'm satisfied with life, and I find myself being happy and excited about things I've never been happy about before. I get excited about going out to dinner with people when I used to be anxious. I just feel very lucky and grateful. It used to be that I'd say to myself, "I should feel lucky and I know I'm lucky, but I don't feel it." Now I genuinely feel lucky and grateful. I often say to myself, "What a great life!" I've never felt that way before.

I have noticed some other things however. I'm out of ease sometimes. I get the restless leg thing quite a bit. Also, the most unusual thing happened this morning. I was talking to my friend Fay this morning. Fay was upset because her daughter got kicked out of preschool. Unfortunately, I have a lot of experience in this area considering that my son Julian had been kicked out of practically every preschool in Los Angeles. I was telling Fay that sometimes when things like this happen, you don't realize how unsuitable the situation is until you've had time to think about it, and then you realize it is for the better. It was at this point that Geoff said, "I wonder if that's how I'll feel?" Leaving me to grab the implication of "when I leave you" for myself. When he said that, I quickly gave him a big punch in the arm and went back to my conversation leaving Geoff to say, "Oh my gosh. You hit me!"

This is something not only highly unusual for our marriage, but more unusual for me. I am a very controlled and measured person. Never, ever have I hit my husband. I've only truly yelled at him once in our marriage. But lately, I'm just a reactive person. I don't get angry. It wasn't that I was angry when I punched him. I'm just reactive. I don't think I would have even given hitting him a second thought if he hadn't been such a big baby about it. Then he said, "that's okay. It's not like you could really hurt me by hitting me." And you know what? I almost hit him again, but I stopped myself. I'm just out of control.

Back to Cymbalta. It did help with the pain. I notice that I'm in much less pain these days. I did have a time a few weeks ago when I just felt awful, but I think I may have had a bug because I'm completely over it now. If you haven't talked to your doctor about Cymbalta, you might consider it. I'm really glad my doctor brought it up. I'm much happier and healthier for it!

Have a lupie day!

LupieKat

Sunny Days

2008-07-08T23:47:00.000-07:00

People often tease me during the summer because I go out with an umbrella. On cloud free days, I get jokes like, "Good idea. It looks like rain."

However, I'd rather go through teasing than go through a flare because I was too embarrassed to take out my umbrella. Additionally, people with lupus tend to be more prone to non-melanoma skin cancer because of the immunosuppresive drugs many of us take.

If you're lupie, or even if you're not lupie, make sure to take care during this sunny time a year. Wear protective clothing and sunscreen. Personally, I like the Aveeno 55 spf. It works really well. I also wear sunglasses to protect my eyes because the meds I take make my eyes rather sensitive.

Lastly, because we don't get as much sun as other people, lupies sometimes suffer from Vitamin D deficiency. Have your doctor test your Vitamin D levels. If they're low, the doctor can prescribe high dose Vitamin D to get you back in order. When I had Vitamin D deficiency, my bones hurt to the touch. Now, I do well just taking regular vitamins.

Enjoy the summer, and try to enjoy living lupie!

LupieKat

Grief and Lupus

2008-07-02T07:35:00.000-07:00

My grandma passed away yesterday. It upset me tremendously. I'm still upset actually. I spent the day yesterday sleeping and eating Oreos. This morning I feel nauseous and achy. It's hard to remember to do the things I need to do to stay healthy when I'm grieving over the loss of my grandmother, but I need to pull myself together if I expect to fly to Louisiana for the funeral. It will do no good to make myself too sick to get on a plane.

That means that I'm going to get my pitiful self out of bed, take a shower, eat a healthy breakfast (probably oatmeal), go to work, hit the gym at lunch. Most importantly, stay away from the junk food. It only makes me feel worse.

Take care everyone.

Live lupie!

LupieKat

Who's the Mother Anyway?

2008-06-21T08:08:00.000-07:00

On Thursday I was supposed to go to a poetry reading to share a featured reading. Usually, I will go to a reading no matter how I feel. The problem with Thursday was that my husband had class and I was going to have to drive myself. Before I was set to leave, my daughter begged me not to go saying that I wasn't in shape to drive. I was a bit cranky with her for trying to tell me what to do. When did she become my mother?! I grudgingly complied with memories of my begging my parents not to drive under the influence. I remember telling myself that I'd listen to my kids if they ever said the same to me, so I did.

Then yesterday morning, my daughter left for school yesterday saying, "Be careful to stay out of the sun today Mom. It's going to be a high UV index." Seriously, when did she become my mother?! I was complaining about this to my friend Didi yesterday. After all, I'm the one who is supposed to tell her what to do. She's not the boss of me. I'm a grown woman, almost 40! I don't need my teenaged daughter to tell me how to get through my day.

As I was midway through this rant, my friend Didi said to me, "You're lucky. You daughter cares about your well being. My family could care less about me!" It was at that point that I took a deep breath and realized, that yes, I am very lucky. My daughter has had a rough year. Her father had cancer a few months ago, after all. She never knows what shape lupus will have me in. It must have her feeling pretty scared and out of control at times. It's understandable that she'd want to control what little things she can. So she tells her father to drink 2% milk, reminds her mother of the UV index, and encourages everyone to exercise. It's her way of feeling in control of an uncontrollable situation.

I am very lucky.

Take care. Live Lupie!

LupieKat

Too Confident in Feeling Good?

2008-06-19T10:23:00.000-07:00

I'm in bed today. My friend Amy said I was feeling too confident in my recent good health, and I needed to be reminded I have lupus. She was joking,of course, but it made me wonder if my overconfidence in my good health made me push myself too hard.

My doctor says I did and ordered that I spend the rest of the week taking it easy. The toughest part of this whole thing is that my friend Jamillaah is in town, and I wanted to take her out. That's just not going to happen. I really wanted to show her the new, healthier Katerina, but instead, she is going to see the same tired Katerina that she's almost always seen.

I'm a bit frustrated. One day, I'm talking to my trainer about how I'm going to take surfing lessons in August, and the next day, I'm dragging around like I'm 92. I'm going to listen to my doctor and take it easy. He told me that he didn't think I'm having a flare. He thinks I just overdid it and my fibromyalgia is acting up. Hopefully, I'll be over this by Monday.

On a brighter note, this time in bed will give me a chance to catch up on sleep. Also, if I have energy, I'm going to write some new poems.

Take care all and live lupie!

LupieKat

Are Seizures Common?

2008-06-11T18:41:00.000-07:00

I was just reading that some lupies suffer from seizures at some time or another. I've never had a problem with seizures myself, but I can see how that can be worrisome for some lupies out there.

According to the article I read at Reuters, hydroxychloroquine helps treat seizures. The article also states that seizures are seen early on in lupus diagnosis.

I mention it so that lupies know that they aren't alone, and that there are plenty lupies going through the same thing. Hopefully, you're being treated and the medication is helping alleviate the symptoms a bit.

Take care and live lupie!

Feeling Twitchy

2008-06-02T11:50:00.000-07:00

For the past several days, whenever I'm stressed or thinking really hard, my eyelid twitches. I've had problems like this in the past, so I'm not too concerned about it. I only mention it because I've heard that the twitches can be common in lupus.

If I wanted to, I'm sure I can search the Internet for the myriad ways my twitching eyelid can possibly be some sort of life threatening symptom, but who has that kind of time? If my twitching eyelid is my biggest health problem right now, I feel pretty lucky. I think instead, I'll take a few deep breaths and wait for the twitchiness to pass. My doctor has me visiting a neurologist because of fainting spells, so I'll likely mention it then.

Until then, I'll try to live my life hypochondria free!

Have a great day Living Lupie.

LupieKat

Walking and walking

2008-06-01T06:44:00.000-07:00

Many employees at my job participated in a 5K yesterday. I was very excited because I'm part of the community involvement committee that helped organize our attendance. I had asked my trainer a few weeks back if he thought I was in shape enough to do it. He was a bit dubious, so he had me walk on the treadmill at increasing increments. By last Thursday, I was walking two miles, so he gave me his blessing for the 5K with loads of instructions. He told me to watch my heart rate and said, "If anything hurts at all, you're to stop. Ankle, hip, knee. If anything hurts, just stop. Don't focus on finishing the race."

So I just took a nice leisurely stroll with my friend Brett. Brett runs the blog Cranky Flier. Check it out. Brett and I walked the 5K in a bit around 50 minutes. I felt so proud of myself. I did this with no pain whatsoever.

Today, is a slightly different story. My left hip is killing me. I usually exercise everyday no matter how I'm feeling, but I think it's a good idea to take it easy. I think I'm going to spend some time in our apartment jacuzzi to see if I can work out whatever kink I have in my hip. It may just be a bit of bursitis.

Today's tip. Always manage the pain.

Have a great day living lupie!

LupieKat

You Can't Take a Holiday from Good Health

2008-05-26T08:02:00.000-07:00

That's what my trainer said the last time I said that we couldn't work out because it was a holiday. I grumbled and called him names under my breath, but he was right. I can't take a holiday from working on improving my health no more than I can take a holiday from having lupus. I have to deal with having lupus every day which means I have to work to keep my flares to a minimum every day.

I hate exercise. I got a trainer about three months ago as an experiment to see if it would motivate me to exercise more. Not only has Phil, my trainer, motivated me to exercise more, he encourages me to eat right. It was my New Year's resolution to exercise regularly, so I got a membership at L.A. Fitness. I explained to the fitness counselor my assortment of health issues, and he assured me there would be no problem. Unfortunately for me, he was wrong. The woman who worked with me, had no idea about lupus and pushed me way too hard. I got sick at the work out and was in bed for a week.

A month later, I went to Equinox. The fitness counselor there explained to me how their trainers were trained. She set me up with Phil. When I met Phil, he impressed me with his knowledge of lupus and Marfan's Syndrome. He had me get a heart rate monitor so that we could keep track of my heart rate while I worked out. He pushes me hard but not too hard. We review classes at the gym together to pick appropriate ones for me.

The first few weeks I worked out, I felt so exhausted, but now, I feel really good. Every morning I wake up to work out, I'm so cranky and stiff, but after working with Phil, I feel great. I told Phil I want to be able to surf by my 40th birthday which is in December. Phil assures me that there's no reason I can't make that goal. If I do, I will be so happy.

If you're a lupie considering exercise, take it slow. Make sure to talk to your doctor about acceptable exercises. Also make sure you have the appropriate workout attire. If you all recall from previous posts, I broke my foot walking in the wrong shoes once. If you decide on a trainer, make sure they are trained in working with people with chronic conditions like arthritis and lupus. Good luck and live lupie!

Long time no post

2008-05-13T11:18:00.000-07:00

Hi Lupies:

Forgive my long sabbatical. I didn't want to blog until all my husband's issues are settled. Long story short. He had his prostate removed, and then a spot was found on his lungs. It's been a long six months, but the spot on his lungs, which the doctors still can't diagnose, is getting smaller. Whatever it is will be disappearing shortly (Hopefully.)

On my end, I've been doing a lot to live my lupie life. I found a car. I drove every car in existence. I found the most comfortable cars to be:

Honda Civic
Toyota Camry
Infiniti M Series
The Volvo SUV

However, the winner for comfort was the BMW 745Li. That car is perfect. It has comfort seats that adjust at least 20 ways, heated seats and massage on the driver's side. I got mine used because new is just way too much for us to afford. I love it.

Thanks for all the wonderful comments on my blog. I will write again soon.

Wishing you all a pain free lupie day!

LupieKat

Lupie Eating

2007-12-16T07:33:00.001-08:00

I've noticed something interesting lately. My lupus symptoms are better or worse depending on what I eat. Normally, my diet is the same. Cereal for breakfast (typically raisin bran, oatmeal or granola). Veggies and fruit for snacks (I usually bring a small salad and a lot of fruits). The occasional cookie (because I love cookies). Lunch is generally my largest meal of the day. That's when I fulfill my meat requirements for the day. I'll sometimes microwave popcorn at about 3 in the afternoon. And a very light meal for dinner. I rarely eat anything more than a salad or a piece of fruit for dinner.

A few weeks ago, I varied off this food schedule. My husband Geoff wanted to go to Quizno's and share that new Sammies meal. I ate my one Sammie and I was still hungry, but I didn't want to order another Quizno's sandwich, so I figured I'd eat some of my fruit and veggie snacks when I got back to work. By the end of the work day, I was starving. I decided that I wanted a burger, so Geoff and I stopped at Burger King on the way home for a Whopper. I don't eat burgers all the time. I think it had been several months since the last time I had a burger. There are just some days you need a Whopper, and that day was mine. Anyway, the next morning, I woke up in such pain. My joints were more achy than I can remember.

At the time, I remember wondering if the meal I had the night before could have had anything to do with my achiness. Then there was yesterday, another unusual eating day for me. Yesterday was our company Christmas party. The day started off with me wanting to find shoes for the party, and Geoff wanting a bike ride, so Geoff took me to the shoe store with the hopes of taking his bike ride later. After the shoe store, we were hungry, so Geoff asked if I wanted to go out to lunch. My original thinking was to say "no" because we were meeting friends for dinner before the company Christmas party, and I knew the Christmas party would have heavy appetizers. I ended up saying "yes" in order to spend quality time with Geoff before his surgery on Wednesday.

We decided to try out Shanghai Reds on the Marina. To our surprise, Shanghai Reds serves only brunch until 3 p.m., so we had the brunch, which was great, by the way. They had an omelette bar, chilled crab and shrimp, sushi, mexican food bar, traditional breakfast items, belgian waffles, etc. I ate way more than I should have considering that we were meeting friends for dinner. Later that evening, we met our friends for dinner at Locanda del Lago in Santa Monica. I ordered the chilean sea bass which was delicious. They prepare it wrapped in what I can only describe as a salt mound. When the waiter brought it to me, he removed the mound of salt that consisted of these huge grains of salt lying on top of what I assume was something like wax paper. My fish was then spooned onto my plate. After the dinner, we walked to the Christmas party which was being held at Tengu. I passed on most of the appetizers. I did have a cookie toward the end of the evening.

Now, as I type this, I'm in terrible pain and have a horrendous headache. Yesterday, was an unusually long day for me, so I don't want to completely blame the food. I'm usually in bed by 10 p.m., but last night, I turned in a little after midnight. Considering the party ran until 2 a.m., I was early. It was a cool party because PriceGrabber is the coolest place ever, but 2 a.m. is a bit long for my lupie body to be anywhere.

Even considering my long day, I tend to wonder if the salty food I had the night I ate the Whopper and last night have anything to do with the way I feel. I think I'm going to be careful from now on and try to avoid foods that have a high salt content. Let's see if that keeps my lupie symptoms in check.

This time of year, it's kind of hard for me to avoid the salty food with all the Christmas parties and family meals, but I think I'll eat my healthy meals at home, and then just snack lightly at the parties.

Take care and have a lupie day.

LupieKat

Holding that Lupie Emotional Thread

2007-12-14T12:51:00.000-08:00

I've been crying a lot the past few days. People with lupus sometimes have problems with depression, but so does half the non-lupie world, so I hesitate to consider my feeling down to be lupus related.

Yesterday, I was at work struggling not to cry, and my husband calls to ask if I wanted to go to a birthday lunch for Veronica. (Veronica is a co-worker who is very interesting, smart and sweet.) My first thought was to say "no" because I thought I'd bring the lunch down, but I didn't want to offend Veronica, so I went. It was a nice time. We all had a good conversation. It helped to lift my spirits.

Then last night, when I got home from work, I asked my son to walk the dog, and he was filled with nothing but attitude about it. He walked the dog, but he wasn't happy about it. I love my son, but sometimes he really stretches a mother's love.

Today, I went to the doctor. I wanted to talk to him about this cough I've had since August. I've also had dizzy spells, and I was going to talk to him about the depression too. I think my doctor was having a bad day because he was very agitated with me. By the time I got to the depression aspect, I was in tears and have beeen holding back tears ever since.

It will all be okay. I feel as long as I can say that, I'm not in a true depression. When I'm in a true depression, I can't see a way out of the dark hole of the depression. Right now, I think I'm just sad about all that's going on. I'm really stressed about my husband's surgery. It will be a relief when it's over and he's okay.

I'm trying not to let things get to me and keep a good attitude, but it's really hard. I know I have to try because nothing is worse for a lupus flare than stress and mood. Tomorrow is our company Christmas party. This party will be the first in a long line of parties that go on every night until my husband's surgery. Hopefully, it will help keep both our moods up.

Have a lupie day.

LupieKat

You Know You're Lupie If...

2007-12-06T05:51:00.000-08:00

If only figuring out if you have lupus were as entertaining as a Jeff Foxworthy joke, but most times, it's not. It can be a very frustrating, confusing, and tiring process.

I received an e-mail recently from a nice young woman who was upset because her doctor seemed unsure of her lupus diagnosis after he told her she had lupus and started treating her. That is a very frustrating experience, but lupus can be a hard thing to diagnose. That's why doctors came up with the 11 Criteria for Diagnosing Lupus. Doctors consider that if patients have four of the 11 criteria, the patient likely has lupus. The list reads as follows:

Malar rash-- the malar rash is a rash that you get on your cheeks that runs across the bridge of your nose. It's often called a butterfly rash because it looks like a butterfly. My malar rash is only noticeable to me and those who love me. It's very faint. I actually have one now, and I'm guessing no one at work or my husband notices. (Not that he doesn't love me. If I were of a mind to point it out to him, he'd say, "Oh yeah. You do." He's just not a visual person). My therapist was actually the first person other than myself to notice my malar rash. I walked into her office one day, and she said, "What's wrong with your face?"

Sun sensitivity--for me, this happens in many forms. Doctors generally will look for a rash in response to sun exposure. I get this, but also, my malar rash is worsened by sun exposure. Not only that, but the sun hurts. When I go out in the sun, it feels like someone is sticking lit matches onto my skin.

Discoid rash--I don't have this one. A discoid rash is a raised, scaly rash. I'm not very familiar with the appearance of this rash, but I'd guess it's disc shaped.

Mouth sores--my least favorite lupie symptom. Before I received lupus treatment, my mouth sores were so bad. I was miserable. They were on my tongue and on my cheeks. I even had sores that didn't hurt on the roof of my mouth. I didn't even know those existed until the doctor told me about them. Sometimes lupies get sores in their nose, but I don't.

Joint pain--this is my most persistent lupus symptom. My joints always hurt, but the pain does range from bearable to excruciating. Popular joint pain sites for me are my feet, hands, knees, and elbows. Sometimes, I'll get pain in the hips, ankles, and even on my ribs.

Swelling of the lining of lungs and heart--I'm not very familiar with this symptom. I once had a doctor tell me I had swelling of the heart, but then a few weeks later, he said I didn't.

Kidney disease--I don't have this one, but my sister does. My doctor actually just told me that my auto-antibody that's linked to kidney disease wasn't high but needs to be watched. It would be nice if I could remember which auto-antibody that was. If I did, I'd be nice and informative.

A neurological disorder--if I were being honest with myself (which I guess I'm being now), I'd go and get this one checked out. Doctors consider that lupies have neurological disorders if they have seizures or psychosis, but maybe they should examine this a bit more. Lupies also have something called "lupus fog" which is a bad case of forgetfulness. I also get these horrible headaches. I fight off depression. I get dizzy. I've fainted and awaken confused twice in the past few weeks. I had a brain scan about five years ago, and the doctor said I had plaque on my brain which is common for someone with lupus. I guess I should go to a neurologist again or at least tell my rheumatologist of my latest problems. Also, when I type, I'll type words that make no sense. Instead of typing, "I need to go to the store." I'll type, "I need to go to the cookie." It's really weird. And lately, I'll be talking and lose my thought mid-sentence, or I'm not able to remember common words, or I'll mix up the structure of my sentence.

Low blood count--this one has caused my doctors no end of confusion and worry. My anemia gets so bad, my doctors often worry of heart failure. Lupies can have low red count, platelet count, or white count. The reason why this one has been hard for me and my doctors is that my low blood count is caused by three things, lupus, iron deficiency, and sickle cell trait. Lupus anemia can be treated with the usual lupie treatments. Iron-deficiency anemia is treated with iron, of course. From what I'm told, lupus anemia is not helped by iron treatments.

Positive anti-nuclear antibody test--this test was an interesting one for me. My doctor ran this test on me for years because she often suspected lupus, but it never came back positive. Then my cardiologist, after he told me I had the swelling in my heart, ran anti-nuclear antibody test, and it came back positive. My rheumatologist at the time said that different labs can have different results.

Positive results for lupus indicative blood tests--This would include a positive anti-double stranded DNA (I've got this one), anti-Sm, anti-phospholipid antibody, or a false positive syphllis.

Let me make sure I didn't miss any... Nope, they're all there, and I've been diagnosed with seven (eight, if I counted the heart swelling, which I don't, and nine, if I counted the neurological disorder, which I won't) of the 11 criteria. I've found that doctors won't diagnose lupus if you don't come back with the positive blood tests, and you could have nine of the 11 criteria. I had met five of the Criteria and there wasn't a diagnosis until the blood test came back positive.

Let's try this again. You may be lupie if you have a malar rash, mouth sores, sun sensitivity, discoid rash, joint pain, anemia, kidney disease, swollen heart or lungs, positive anti-nuclear antibodies, positive lupie indicative tests, or neurological disorders. That's a mouthful. Mr. Foxworthy, your job is safe.

Have a lupie day!

LupieKat

Today's Diagnosis, Osteopenia

2007-11-27T07:16:00.000-08:00

I saw my rheumatologist yesterday to follow-up on my bone density tests and general well being. Overall, I feel a bit better. I like this doctor. Whenever you come in for a check-up, you fill out this form listing out what you want to discuss. She's very orderly. I'm orderly too. I like that she asks for a written list because I usually have one, and doctors don't care to see it. As we discuss things, she writes down what we discuss and then gives me a copy. That way when my husband asks how did it go, I can just refer to the list.

Anyway, back to my bone density tests. It turns out that I have osteopenia. Osteopenia occurs when your bone mineral density is lower than what it should be, but it is not low enough to be considered osteoporosis. My bone density is only slightly low, so my doctor thinks that if I take calcium supplements (which I have been) and Vitamin D supplements, it should help. She'll run blood tests in about eight weeks to see how that's working out.

I'm sure I've mentioned this before, but lupus patients seem to be at a higher risk of osteoporosis and osteopenia. There are several reasons. Lupus in general seems to cause it. Many people with lupus tend to excercise less frequently. Also, prolonged use of steroids increase the risk of bone loss.

We can do a few things to help slow down our bone density loss. We can talk to our doctors about the use of calcium and Vitamin D supplements. We should also discuss what allowable exercises we can do. We should do what we can to manage flares and keep down inflammation. All of these will help lessen bone mineral density loss.

Well that's it for yesterday's doctor's appointment. Today, I go to the gynecologist. Woohoo! Come back tomorrow as I describe every last detail of that appointment! Just kidding.

Have a lupie day.

LupieKat

Lupie Holiday Shopping

2007-11-25T14:54:00.000-08:00

Even before my lupus symptoms got bad, I hated holiday shopping. Now with lupus, shopping in a mall is unbearable. Thanks to the Internet, I now do the majority of my shopping online. There are plenty of great places to shop inexpensively that even provide free shipping. Many also provide gift wrapping. Today, I got free shipping from RedEnvelope, Drugstore.com, Beauty.com and BarnesandNoble.com. Toys R Us was offering free shipping if I were willing to appropriately compliment toy items with a $40 purchase, but a purchase like that for one of my nieces and nephews would be out of budget. I have lots of nieces and nephews and if I spent $50 on one, I'd have to spend $50 on all of them, and I'm not rich, and I'll never be if I do that.

A great place to do shopping is with the company I work for, PriceGrabber.com. At PriceGrabber, you can use the Personal Shopper feature to shop by price, relationship, or personality. I know many people worry about shopping online. I often use companies that have a longstanding reputation, such as, RedEnvelope, Target, Amazon, or ToysRUs. Another great thing about PriceGrabber is that you can read the Merchant reviews and see what sort of experience other customers have had with a particular company. With a company like PriceGrabber, the online shopping experience is a lot safer, and I don't just say that because I work there. I say that because I believe in the company I work for. If I didn't, I wouldn't be there.

Since I want to try to be unbiased, another great shopping site is Yahoo Shopping. It also has shopping guides, and many of their Companies are well known, reputable dealers. I've used them for several years, and I've never had a problem with any of the companies I shop from, but as I said before, I always choose reputable and well known companies.

I have to say that shopping online is great for someone with lupus. This morning, I purchased, wrapped, and shipped presents for fourteen people without even standing up. It took me about two hours to shop for my relatives online, when usually something like that takes me days and loads of stress.

My lupie advice for the month is not to let holiday shopping send you into a flare. Go online and get it all done without running around and tiring yourself out.

Take care and live lupie!

LupieKat

Thanksgiving, Lupie Style

2007-11-22T07:51:00.000-08:00

Happy Thanksgiving!

I love to cook. Before I went back to work full-time, I used to put out a spectacular meal for my family practically every night, and when it came to Thanksgiving, there was no stopping me. I'd do up a turkey and traditional sides with a side of gumbo. My mother never let a holiday go by without gumbo, and as her daughter, I wanted to keep to that tradition.

I think two years ago was the last time I cooked a true Thanksgiving dinner. Last year we spent it with relatives, and they cooked. This year, we're not flying because Geoff has grounded me since I got so sick flying to my niece's wedding last month. This year, I honestly didn't want to cook. I'm a bit tired. Also, because of Geoff's recent cancer diagnosis, I'm just drained. Geoff and I discussed going to a restaurant, but that concept drained him.

In the end, we decided to let the good people of Honeybaked prepare our Thanksgiving meal. We picked it all up last night, ham, cranberry salad, scalloped potatoes and cheesecake. All we have to do is heat it up. The sum cost of this meal for a family of four turned out to be under $60.00, which is much cheaper than anything I put together on my own. I can't even put together gumbo ingredients for under $60.00! I think this meal will make us relatively happy. If we start aching for gumbo, tomorrow we can all go to the Farmers' Market near the Grove and grab bignets and gumbo from this little food stand over there.

Aside from that, I think we'll spend the day appreciating the fact that we're all still here, and that we're one happy if not healthy, family.

Take care and live lupie!

LupieKat

Complimentary Doctor's Appointments

2007-11-21T06:38:00.000-08:00

My husband and I both had doctor's appointments. I went to see my GP because it doesn't appear that my ear infection will go away, and my husband had an appointment with his urologist to discuss his options.

My GP gave me stronger ear infection medicine. He said that if the new drops don't work, he'll send me to a specialist. He also was able to run down the tests from my last visit to the rheumatologist. My GP keeps an eye on all my specialists. I like that. He told me that he was going to send my pulmonologist an e-mail because he didn't understand the reasoning behind a treatment that was recently prescribed.

I went many years without a GP, but now I realize I did myself a disservice. A good GP is vital to proper lupus care. I definitely need someone who can keep track of all my specialists and follow my course of treatment.

After my appointment, we went to my husband's urologist. We discussed the stage and extent of his cancer and discussed treatment options. My husband wants surgery to have his prostate removed. I'm having a hard time getting used to this all. I want to question the viability of the results and diagnosis. I'll support what my husband wants. I guess I'm just still in shock.

You all have a lupie day.

LupieKat

Don't Forget About Yourself

2007-11-19T22:45:00.000-08:00

Usually when I go without writing, it's because I don't feel well. This time it was because my husband wasn't feeling well, and I couldn't write about it. My daughter reads my blog, and we didn't want to worry the kids before we had all the facts. I tried to think about other things, but all I could think about is that my husband could possibly have prostate cancer. He was going through tests, and all I could do was wait and worry.

Well, the waiting is over, and my husband does have prostate cancer. We go in to meet with his doctor tomorrow to discuss options. Fortunately, it was caught early, and his prognosis is likely good.

When I'm stressed like this, I often just want to think about the thing that's stressing me. Right now, all I can think of are ways to take care of my husband. I've researched different treatments for prostate cancer. I have put together questions for his doctor, and I've come up with a new diet I'm hoping to convince my husband to eat.

On top of this all, I have to remember to take care of myself because the last thing we need right now is for me to feel worse than I usually do, so I'm trying really hard to sleep when I'm supposed to sleep, eat when I'm supposed to eat, and take meds when I'm supposed to take meds.

So, I guess that's my advice today. It's so easy to say, "I don't have time for that. I've more important things to do." Don't do that. Take care of yourself, so that you can take care of the ones you love.

On that note, it's past bedtime. I need to practice what I type.

Take care all and Live Lupie!

LupieKat

Fibromyalgia, Lupus, or Both?

2007-11-08T03:50:00.000-08:00

Okay, I just noticed that the link on my last post didn't work. I think Blogger and I aren't getting along right now. Sorry about that.

My new rheumatologist told me that most of my pain was being caused by fibromyalgia. This is not unusual for lupus patients. Actually about 25% of patients with lupus will have fibromyalgia on the side.

Fibromyalgia is a syndrome wherein you have pain in your muscles, joints and bones. It can also cause fatigue and insomnia. With these symptoms, you can see why it can be confused with lupus symptoms. Sometimes fibromyalgia patients may be misdiagnosed with lupus. Another common issue is that lupus patients who have fibromyalgia often don't get treatment for the fibromyalgia. This has been my issue.

Fortunately, I now have a pretty aggressive rheumatologist who has worked to treat the fibromyalgia. She told me to go back to my pain management treatments. She's also started me on a new drug called Lyrica. Since I've been taking Lyrica, I've noticed a tremendous decrease in my symptoms. It has also made me terribly sleepy. I couldn't keep my eyes open when I got home from work last night. I passed out at something like 7:30. This explains why I'm awake at 4:00 a.m. typing my blog.

The lessening of pain symptoms has been nice. I won't say that the pain is completely gone, but it definitely is more manageable.

Take care and have a lupie day.

LupieKat

Before Diagnosis... After Diagnosis

2007-11-06T07:49:00.000-08:00

I just finished reading a story about Crystal McKinnis. She was sharing her experience of what it's like to deal with lupus before and after diagnosis.

Remember how it felt before you were diagnosed with lupus? I do. I thought I was going crazy. I felt so bad, and my doctor couldn't find a single problem with me. I had a high SED rate, but that was it. I even stopped my part-time job because I was getting sick so much, and my boss couldn't cover for my sick days.

When I was diagnosed with lupus, it was actually a relief. I remember saying to my doctor, "You mean I'm not crazy?"

However, that relief feeling has passed. I'm just ready to figure out a way to get over this now.

If you're interested in reading about Crystal McKinnis, here's the link:

Okay, I did it again

2007-11-05T07:41:00.000-08:00

I've been away for a while. I know I said that I'd try to write even when I feel crappy, but apparently, I just suck at that. My niece got married on October 13th, and I flew across the country to be there. It was a quick turnaround. Usually when I travel, I take a day or two to recover before I get on the plane again. I didn't do that this time, and it cost me. I spun myself out into a full blown flare. I felt so bad. I would go to work, but other than that, I did nothing but sleep. My doctor shot me up with steroids and told me to go to bed for a week, but I didn't do that because my boss has a broken hand and I didn't want to abandon him.

I've been doing a lot of sleeping, but I'm hoping to get back on a reasonable blogging schedule soon here. If you don't see me for a while, I hope you understand. Working is taking a lot of energy these days.

Have a lupie day.

LupieKat

A Little Help to Get Out of Bed

2007-10-10T09:35:00.000-07:00

Okay, so I've been on the Omega-3 pills for two whole days so far, and I have to say that so far, it's not working. I'm sure it takes more time, but I'll keep the world updated of my progress.

Getting up in the morning has been rather difficult the past few days. When I'm lying in bed, I'm okay, but those first few steps in the morning are so painful. One thing that's been helping is a product called Mineral Ice. When I get up and head to the bathroom in the morning, I determine the parts that are hurting, and I apply Mineral Ice on them, and then I'm able to get around and do my exercises.

I guess we'll call that LupieKat's tip for the day!

Have a lupie day.

Katerina

Is Omega-3 Good for Lupies?

2007-10-08T08:14:00.000-07:00

I just finished reading an article that discusses a study using Omega-3 as part of lupus patients' diets to see if it helped improve lupus symptoms. It appears that significant improvement was shown in those who were using fish oils.

There has often been talk that Omega-3 is good for people with lupus for quite a few years, so if I see something labeled Omega-3, I'll pick it up. I actually just packed a snack of walnuts because they were labeled with "Omega-3". My soy milk is also an Omega-3 soy milk.

I have to say that so far, it's not working because I ache like you wouldn't believe this morning. The study did say that improvement was shown in those who used fish oils. Also, there seems to be a minimum dosage requirement.

I think I may try to catch up with Omega-3 fish oil supplements and see how they work. The article said the results spanned 24 weeks. I wonder if it will take a while to notice changes? I'll let you know.

If you're interested in that article, here you go:

Have a great day living lupie!

Lupie Kat

I Want to Stay in Bed Today

2007-10-02T07:04:00.000-07:00

I'm very tired and achy today. I want to stay in bed. I think Geoff wants to stay in bed more since he's actually asleep, and I'm not! I'm in that "I'm tired, but it hurts too much to sleep" stage right now. I won't stay in bed because I need to go to work, so I'll drag my butt out of bed as soon as I'm done writing.

I'm getting great e-mail from readers. Some share great news. Some share their struggles. A lot feel isolated. I feel isolated sometimes too. That's why I go to work. One of the reasons I go. Even sometimes at work, I feel isolated. I've been there for over a year, and at this point, I have a nice set of people I can talk to. I think it pretty much took me a year to find people I feel comfortable with. It's very hard for me to reach out and make conversation.

There's this one guy at work that no matter what I say to him, I feel like I'm an idiot when I'm done. The odd thing about it is that he's the one who tries to make conversation with me. He'll say, "How's your day today?" and I'll reply with something completely idiotic and nonsensical like, "I think the sky is blue today." and he'll respond. "Yeah" and walk away. He'll come back again in a few days and say something else and give me another opportunity to look silly. When Geoff's with me, I tend not to talk like an idiot. When Geoff's around, I don't feel nervous, and it's easier for me to express myself. Without Geoff, talking to people is very challenging.

I keep trying though because it's easy for me to feel isolated if I don't. When I feel isolated, I get very depressed, and I want to give up. Sometimes to the verge of feeling suicidal.

My advice for the day. Don't let yourself feel isolated. Reach out and talk to someone. If you can't reach anyone by phone. Send an e-mail. If you're at a loss for who to e-mail, e-mail me. I always write back. Sometimes it may take me a while, but unless your e-mail accidentally went into the spam folder, you'll hear from me.

Take care and keep living lupie!

Katerina

Close to Journey's End

2007-09-29T12:22:00.000-07:00

I just got an e-mail from Geoff Thomas. I've mentioned him a few times on my livinglupie site. He's been riding his bike around the U.S. to raise lupus awareness. Geoff finishes his 9,000 mile lap of the U.S. tomorrow in New York City at Madison Square Garden at 1:00 p.m. Isn't that just amazing? I'm in awe of him. If you happen to live in New York, please go to Madison Square Garden to give Geoff a warm welcome. He deserves it!

Following is an e-mail I received from Geoff:

Dear Katerina,

I'm about to finish my journey in New York Sunday (tomorrow) and just a word of thanks for your support. It is genuinely appreciated.

Over the past five months, my main intention has been to raise awareness and support those who are suffering a whole lot more than myself.

It has been humbling, saddening, enlightening and uplifting.

It’s also somewhat ironic that after 9000 miles, my journey is just about to begin.

I’ve learnt you don’t give up and if I can apply that attitude to helping to find a cure for this terrible disease in any small way, then I’ll do my best to assist.

If there’s an upside to Lupus, and I’ve said this many times, it’s the great people you meet and connect with.

Despite finishing my ride, I'll be keeping the website open to promote our cause and to keep in touch with anyone who has any questions or requires any advice that I may be able to pass on. Over the past 155 days, I sure have learnt a great deal.

Once again, many thanks and take care.

You're doing a wonderful thing!

Kind Regards,

Geoff Thomas

www.bikeusa2007.com

Crossing Fingers

2007-09-28T12:36:00.001-07:00

I'm getting ready to take off to what I'm hoping is my last iron infusion appointment today. I missed Wednesday's appointment because of the pain, but hopefully, that won't matter, and I'll be done.

The Mind Goes with the Body

2007-09-26T22:40:00.000-07:00

I was just reading this month's issue of Redbook Magazine. This issue happens to contain advice from Deepak Chopra. (Doesn't that name just say, you must listen to me about anything holistic?) Anyway, Chopra says, "Your body is a battleground of the wars you wage in your mind." I have to agree with that today because today was a rough one.

I think I mentioned in my last blog that I had a disagreement with my brother. Well, the whole thing has had me upset for days. It caused me to play this negative soundtrack in my head. I started thinking about all the bad things people have said to me, and just all these negative things that have happened. I was in a horrible thinking pattern. Also, my job sometimes involves my having to deal with difficult people. When I'm in a mood like this, dealing with difficult people makes it worse.

And then last night, my husband and I got into an argument, and I was upset with him. I was just upset all over. Then this morning, I was heading to work, and I got this sharp headache on the right side of my head. I used to get them years ago before I started the plaquinel, but I rarely get them since. Their awful headaches. It's like someone is taking a piece of my brain and squeezing it. It never lasts for more than 30 seconds, but it does throw me off for a while. Then when I get to work, I start to get this pain on my right side. It was horrible. It didn't feel like my usual lupus arthritis pain that happens in my joints. This pain was set in my bones. My husband had to take me home.

We both figured that it was probably all due to stress, and that I just needed to chill, so I rested for a few hours, and I started to feel better. I feel like I brought this episode on myself. I know that I have to keep my mind in a good place because my lupus reactions are always reflected by my frame of my mind, so for now, it's all happy thoughts!

If you're ever at a lost for finding happy thoughts, check out the comedy channels or comedy radio stations. Today, I went to iTunes and downloaded the ABC Family show "Slacker Cats". It's a sick and twisted show, but funny.

Katerina

Overall, a good day

2007-09-24T22:30:00.000-07:00

I was just reading yesterday's blog post, and I notice that I said I went to the doctor yesterday. I didn't go yesterday. I went last week! We'll just call that a brain fart. I'm sure if I worked hard enough, I could figure out a way to blame it on lupus, but let's not. Let's do like Prince and blame it on the rain.

Today was a good day. I actually exercised. I rode a little bit on the exercise bike and did some ab exercises. I had a bit more energy today. I guess those infusions are starting to kick in. I did wake up in pain, but I was able to deal. It was a one pain pill day. That's actually pretty good!

I've been trying to focus on the fact that I feel better than usual. It's been kind of a challenge because I had a disagreement with one of my brothers over the weekend, and that's sort of bringing me down. I tried to push it out of the way because I get very few days where the pain isn't kicking my tail. When the world starts pulling me down, I try to focus on the good things or the funny things in life.

I better get myself to sleep. It's about forty minutes past my bed time.

Night all and keep living lupie!

Katerina

Dr.'s News

2007-09-23T18:14:00.000-07:00

There are quite a few things I can talk about today. I think I'll start with the medical. I went to see my doctor today, and he said that my foot is healing pretty well. He said that there doesn't seem to be any bone density problems. Good news. :) He also said that I could start my walking exercises again in about three weeks. I'm very excited about that one. I'm going to take it at a slower pace this time and make sure I have the right shoes. Hopefully, it will help control my weight.

It's been a pretty decent weekend. I found a great store that had clothes that fit me. I was able to find a dress for my niece's wedding next month. I'll be taking that trip alone because of the time of year, my daughter can't pull herself away from school. Also, we just got back from vacation, so the family budget is kind of depleted. I wish we had more time to save for the wedding so that we could all make it.

Take care all and keep living lupie!

Katerina

New Technique, Better Infusion

2007-09-22T08:44:00.001-07:00

I know I've mentioned before how much I dislike my infusion therapy. One of the reasons it's a bother is that the nurses often have a hard time finding a vein. I tried two new techniques that seemed to help the process. One thing was that I dressed very warmly. Another thing was that I performed windmill movements with my arms a few minutes before. Doing this helped improve the circulation in my arms and made my veins more visible. The nurses were successful with the first injection. It usually takes two to three tries. I was very happy. I was a little achy from the repetitive motion, but Id' rather deal with the achiness.

New Digs

2007-09-20T22:07:00.000-07:00

I moved out of my house in April because I was having a really hard time dealing with the long commute to work in addition to all the stairs in my house. I lived in my house for better than a dozen years, and I miss it, but I have to say that it's a relief to live someplace that is so much easier.

I used to live in Tujunga. Tujunga is a beautiful place with hills, valleys, and wildlife. It's very quiet and serene, but it just wasn't an easy place for me to live. My house was in a hilly area, so I couldn't really take a walk without having to climb high grade hills. Also, stores were a long distance away, so I couldn't get to them without driving, and food was very difficult to come by.

One day, about four years ago, I was really, really sick, and there was no food in the house that didn't require preparation. I could barely stand up, let alone cook. The only places that deliver in Tujunga deliver pizza, and I didn't see myself handling pizza. I did an internet search on restaurants in Tujunga, and just started dialing. At about the fifth call, I called Tori Yen Sushi. I said, "Hi. Do you deliver?" She said, "No, but you sound awful. Are you sick?" I said, "Yeah." She said, "I'll bring you anything you want." She brought me rice and grilled chicken. That's one of the great things about Tujunga. I miss that. You rarely see selfishness in Tujunga. It's one of the few places in Los Angeles where you can find ice cream socials and parades on the 4th of July.

Now, I'm in Marina del Rey. It's so much easier to get around and do my exercises. Also, food is just shouting distance. I have groceries delivered. Also, there are healthy places to eat here. I'm hoping to just make life simpler. It was really hard giving up my home. I was really poor as a child, and we were evicted a lot and moved all over the city. Tujunga was the first place I could ever call home. Okay, I'm getting myself all teary now. What was my point? Oh yeah. Sometimes you have to let go of things that you care about in order to stay healthy. Having lupus often means making compromises. If something feels like too much, try to figure out how to simplify it and keep living lupie. :)

Lupie Kat

Drug Addicted Lupies

2007-09-19T18:17:00.000-07:00

First, I'd like to say thank you to Melinda for giving me a ride home from my infusion treatment yesterday. It had to be one of my more pleasant rides home after treatment. She showed up exactly when she said she would and made sure I made it to my apartment okay. She's great.

Now, today's topic. I just finished watching a news report from Colorado Springs about a woman named Jennifer Bohanon who was a lupie robbery suspect that was shot and killed by police at a drug store this past Sunday. Parents told reporters that Jennifer became addicted to pain meds because of her lupus symptoms.

This is such a sad, sad story. We lupies know how much the pain can get to us, but at what point do we consider ourselves addicted to our pain medication? I worry about this constantly because my parents were addicts, and I definitely don't want to go down that road. Sometimes I'll just flat out refuse to take my pain medication just to prove to myself that I'm not an addict. Geoff gets frustrated with me when I do this, so now, I take my medication exactly as prescribed and never more often than prescribed.

I also try other things in addition to the pain meds. My first thought is never to take a pill. If it were, I'd be worried. First, I'll try warm baths, meditation, self massage, getting a massage, a funny movie, moving around, talking to a friend that's funny. If none of these work, then I go on a pain medication regimen.

I think the key is to accept that we need our pain medication, but not to be solely dependent on our pain medication. We should try not to be so desperate that we'd do anything to get the pain medication. For me, pain medication is the last resort. I don't know if this outlook will work for me forever, but it works for now.

Have a lupie day!

Katerina

Pick it Up and Push On

2007-09-18T05:34:00.000-07:00

I just finished reading an article on the Pittsburgh Steelers web site about Willie Colon and his lupie mom. Colon discusses how when he's training, he pushes through the pain because that's what his mom does. The woman has had broken bones, dialysis, strokes, and who knows what else, and she still manages to pull herself together and care for her family. The article says that this woman is able to go to dialysis, climb five flights of stairs to her home, and make dinner.

That's just amazing. I recently sold my house because I couldn't climb stairs anymore. These infusion treatments generally turn me into a whiny, miserable person. I don't even want to think about the bag of sunshine I'd be if I were getting dialysis! Sometimes it's good to give yourself perspective and be happy that you're still able to wake up in the morning and move. Even if it is a painfully hampered move.

To read more about Willie Colon and his mom, click here.

It's infusion time

2007-09-12T19:37:00.000-07:00

Every few months, I have to go into the hemotologist for iron infusions to keep my anemia under control. It's a very rough course for me. I'm allergic, so I get iron with a side of benadryl and steroids.

I'm really tired and achy right now. On infusion days, I try to work half a day. I managed to do that, but I forgot to take my morning meds, so I wasn't feeling too well. My heart rate was off, and just felt a wreck. It was a hard work half-day too because my boss gave me a kind of big project that I couldn't finish before I left. He's probably not too happy about that.

Then when I got to the infusion center, I had a problem with the nurse finding a good vein. I always have that problem, but it's been worse.

Once the treatment was over, I didn't have a way home. Geoff couldn't pick me up because he had a meeting. That frustrates me because I sent him my infusion schedule last week. I hate getting infusions. I never feel so alone as I do when I get infusions. I feel weak and tired, and there's no one there to help me. Today, I called a cab, $60 and an hour and a half later, I was home. Next week should be better. My friend Melinda said she'd be able to pick me up. I appreciate her. She's really sweet and considerate.

Lupie Vegas Style

2007-09-11T06:37:00.000-07:00

Well, it has been a while since I've written. I've been away on vacation. I go through an odd relationship with my blog. I'll get into a good series of writing and then I poop out for a bit. Then I'm back at it again.

In the past two weeks, I've gone to Hawaii and Las Vegas. Both of these locations on their face are not very lupie friendly vacations, but if you're diligent, you can make it work. I plan on putting together a special page on vacations on my web site at livinglupie.com to provide vacationing while lupie tips.

One thing I want to talk about today is all the e-mail I received while I was away. It's funny because normally, I don't get e-mail, but last night I checked my e-mail, and I had quite a few letters from men who are in relationships with lupie women. They wanted to know how my husband and I make our relationship work, so I'm going to try to focus more on him in my future blogs.

My husband and I went to Las Vegas this past weekend. Las Vegas isn't one of my favorite places to go. It's sunny. It's hot, and it's hard to go places that aren't filled with cigarette smoke. All these things are very lupie unfriendly. The reason we went was to see Ka at the MGM Grand. My husband loves Cirque de Soleil, so I thought it would be a nice thing to do.

First off, I wanted to wear something nice to the show, but none of my dresses fit me anymore. I figured that I could go to the mall on Saturday and find something before the show. Well, when Geoff (hubby) and I were at the mall, it wasn't working too well. Geoff has the new iPhone, and he's very excited about it. Whenever I'd try on a dress, he'd barely glance up from his phone and say whether he liked a dress or not. He used to be a lot more attentive. This reaction caused me to believe that I'm just not that attractive anymore. Since I've been on the lupus meds, I've gained weight, lost hair, and the shape of my face has changed, so I don't feel all that confident about my appearance, and Geoff's reaction wasn't helping in the least.

After a few hours, I tried on this dress where I thought, "Okay. This is the one." I stepped out of the dressing room all excited, and he looked up from his iPhone and said, "I liked the other dresses better" and went back to his iPhone. That was it. To say I lost it was an understatement. I got mad. He got mad. Then he realized at some point that I felt that he didn't see me as attractive anymore. He assured me that he did. All and all, it was a stellar day.

Having lupus can bang up your self esteem. You can have weight gain, hair loss, growing hair in places you didn't before, rashes, tooth problems. I think what we need from the people we love is too feel desirable. We don't want you to lie to us, but we want to be seen as beautiful even if we don't look 100%. We want to know that it doesn't matter. That all that matters is that we're here and we're trying.

That's it for now.

Have a lupie day.

Katerina

Lupie Bones

2007-08-22T07:54:00.000-07:00

I actually had a chance to speak to my doctor myself by telephone, and he said that my foot is fractured, but only a small fracture. He wants me to go in for an MRI to check to see if there's anything else going on with my foot. He also instructed me that walking a half-marathon isn't a wise goal at this point.

I started wondering what sort of other things could be going on? My doctor said, "thinning bones". In my research, I found that people with lupus are susceptible to osteoporosis, and there are two reasons for this: One, inflammation accelerates osteoporosis, and two, prednisone accelerates the process. The book I read about this recommends that all women with SLE should take calcium. I bought the pills, but they are too big to swallow. I have esophageal motility issues. I think I'll take Tums. Those have calcium, and they're chewable.

Another complication of SLE can be Osteonecrosis. Osteonecrosis happens when there isn't enough blood supplied to the bones and the bone tissue dies. That sounds fun, doesn't it? This condition is associated with the use of prednisone, as well. This is the issue that's diagnosed with MRI scans. I'm just a little bit concerned about this one because it mentions that this problem is commonly seen in the hip, and I've been having pain in my hip for over a year. I mentioned it to my rheumatologist, and he said, "arthritis". I told myself that if I turn out to have a problem, I'm switching rheumatologists.

I hate the uncertain. Whenever I'm in the process of waiting for the results of medical tests, I do nothing but research and theorize. It helps me worry less, believe it or not.

Not Walking

2007-08-18T06:00:00.000-07:00

Okay, I think it was about a week ago that I got the bright idea that I was going to walk a little bit more each day until I was able to walk a marathon. I figured what harm could that do since walking was one of my allowable exercises? The first day I went out, I was in a bit of pain, but what's unusual about that, right? I have lupus. Life hurts, so I just deal. In particular, my left foot was causing me tremendous discomfort. In general, I usually have pain whenever I do any sort of exercise, so I figured that with time, it would get better. The second day, the pain got worse, and then the third day, my foot turned purple.

I thought, well that's a good sign that there's something wrong. I decided it was time to go see my rheumatologist. When I told him what was going on with my foot, he looked at it and said, arthritis. Okay, now we go into a sidebar about being black and going to the doctor. People go through all these surveys, statistics, and theories about why black people don't get as successful medical treatment as whites. They say that it's social, economical, blah, blah, blah, but do you honestly want to know what it is? White doctors have a hard time recognizing unusual symptoms in black people. I honestly believe that my doctor couldn't see the discoloration in my foot. Before I was diagnosed with lupus, I first noticed the butterfly rash on my face. I went to the doctor, and he said he didn't see it. I went to two other doctors and they said they didn't see it either. I asked my husband if he saw it, and he said, "no." I was starting to think I was crazy until I went to my therapist, and I walked through the door, and she said, "Oh my gosh. What's wrong with your face?" I said, "You see it? She said, "Katerina. It's as plain as day. You have a red mask sitting right across your cheeks." I wanted to kiss her.

Anyway, my rheumatologist said he didn't think there was anything wrong with my foot, and there was no need to x-ray it. I was dubious. I've been suffering from arthritis for years, and this didn't feel like arthritis, so I called my primary care doctor. My primary care doctor looked at my foot and said that it didn't look that unusual to him. He suggested that I may have sprained it, and told me to go home and put ice on it. He said that he would x-ray it and call me on Monday to let me know.

When I got home from the doctor, my son said, "Hey Mom. Your doctor called. He said your foot is fractured and that you needed to go in on Monday for an PSD, MND, or something." I responded, "An MRI." He said, "Yeah that." I said, "Are you sure he said it was broken?" My son is bipolar, schizophrenic and ADD, so in theory, the doctor could have said anything. It's possible the doctor didn't call at all, and my son is having a psychotic break, but not very likely. But my son responded, "No. He didn't say it was broken. He said FRACTURED." I love my son. "Anyways Mom. He said that he thinks there's something more going on than a fracture and you needed to stay off it and get that MRI thing, so go to bed and tell me to bring you stuff."

So it looks like my walking a marathon is put on hold for now. Quite honestly, I never really expected that I'd have the ability to walk a marathon. It was just a nice little goal to set for myself. In my mind, I'm this fantastic person, who does all these amazing things. I always like to live my life like I'm working toward being that fantastic person.

Lupie Hubby

2007-08-17T03:05:00.000-07:00

I just finished reading this article about a man whose wife had lupus and breast cancer. He speaks of how she would tell him to go off and live his life because she didn't want to hold him back.

I have that feeling all the time. When Geoff and I first married, we used to do a lot of things together. Our two favorite activities were camping and going to the movies. Geoff and I really love movies. On Tuesdays, we used to go to the theater for two dollar Tuesdays and stay there all day watching movies.

Now, with lupus, I can barely sit in the theater for a ninety-minute movie, so I often beg off. Geoff really loves movies, so he'll often go without me which is fine. He usually takes our daughter. It's good quality time for them.

I often just rent movies these days and have a movie night at home. I like that a lot better than going to the movies. Although, I do miss the experience of people talking at the screen and on their cell phones in the middle of a movie. What I miss most is the sound of a three year old crying in the middle of a Rated-R slasher movie. Maybe I should see if my four year old god-daughter can come over when I rent the double feature Saw and Saw II?

I do plan on going to the movies on Tuesday to see Superbad. My work is having a movie day. I have a comfortable chair that I usually take with me to the beach. I think I'm going to try bringing it to the movies. I thought I'd chance the pain because I hear that Superbad is really funny, and Lupies need lots of funny.

Quitting is okay

2007-08-10T12:01:00.000-07:00

When you deal with something chronic like lupus, you will often hear people say, "Don't quit. Don't give up." Forget that noise. I quit all the time. What I find that I need to do all the time is try.

A few days ago, I decided that I'm going to train to walk a half-marathon. I found this to be a pretty reasonable unreasonable goal. Walking is one of the exercises I'm allowed to do, and all I have to do is walk just a little farther one day to the next until I reach a half marathon length. How hard can that be? Well, when you have joints that don't want to work many mornings out of the year, it can be pretty hard. Actually, it hurts to walk right now, but with lupus, you have to keep moving, and I have to get from one place to another somehow. I guess I can try swimming? It may be that I have to give up on the walking a half marathon goal somewhere along the way, and that's okay. I'll just try something else. So quit all you want, just don't quit trying.

Done Pouting

2007-08-07T06:03:00.000-07:00

Well, I feel a bit better emotionally than I did yesterday. I went to the dentist and I now have a temporary crown. My dentist is great. I used to hate going to the dentist before I had this one. Cleanings were always so painful. I swear I had a dental hygienist who set out to make it hurt on purpose.

Then I found this dentist. The first time I went to his office for a cleaning, I said to the hygienist how I hated cleanings because they were painful, and she said, "You know. We can put numbing gel on your gums so it doesn't hurt." I wanted to kiss her. I can't believe no one ever suggested that before.

If you're a lupie who shies away from the dentist because of the gum pain, ask about getting the gel on your gums. It really helps. It's important that we go. As the link I provided yesterday shows, we are susceptible to gum inflammation. We need to take care of our mouths.

Lupie Teeth

2007-08-06T07:16:00.000-07:00

I had a tooth start to break away on Saturday. That will be the fourth tooth in a year. I have an appointment with the dentist this afternoon. I always have things like this happen to me over the weekend. My dentist would have taken care of it on Saturday, but I wasn't in any pain, so he scheduled an appointment for me to go in today.

I have to say that I'm pretty upset about this. I'm one of those people who does everything I'm supposed to do, which means that I floss at least once a day. My husband tells me that it would be worse if I didn't do these things. He's probably right, but that's little comfort when you're 38 going on 60. I have always taken good care of myself. I shouldn't be feeling this old. I don't drink. I don't smoke. I've never even had so much as a cup of coffee, and I feel like my body is falling apart. I really hate this.

Okay, that's it for my pity party. As you can see, dental care if vital with lupus. You need to take care not to come down with gingivitis or periodontis. Personally, I need to make sure that my mouth is clean in order to prevent yeast infection in my mouth. That stuff spreads down my esophagus faster than a jet plane. When that happens, that really isn't fun.

If you're interested. Here's a link on dental concerns and lupus.

Lucky Lupie

2007-08-04T22:44:00.000-07:00

A few days ago I went to see my doctor about the chest pains I've been having and he suspects that I'm having problem with GERD again and he doubled the dosage of Nexium. I pointed out to him that my insurance doesn't pay for Nexium. He didn't seem to care. Pretty much said that was beside the point and I needed it. That prescription change has likely upped my monthly Nexium bill to $500, unless I get some deal for buying in bulk. The things is that my doctor is right. I do need my Nexium. Four years ago, I was in pretty serious shape, and the Nexium helped me get back in order. I've tried going without it, and I just relapse. I really don't want to risk going without it again.

This means that I will suck it up and pay the extra money. I feel lucky that I'm able to work, and I can afford to pay for my medical care. I know that there are people with lupus who constantly struggle with ways to make ends meet to not only feed their families but to pay for much needed medical care as well. I remember those days. I had long, poor stretches during my childhood into my early adulthood. I spent many days in County hospitals and free clinics.

Thinking about those times today made me want to put together a list of places that provided no-cost and low cost medical care across the country. As I was working on this list I came across a site that had a far more comprehensive list than I can ever hope to put together, so I'll just link you up with that.

Inspiring Lupie

2007-08-03T15:22:00.001-07:00

Yesterday I read an article online about Salimah Mussani. She is a woman with lupus who just won the 2007 Canadian PGA Women's Championship. Isn't that the coolest thing? Normally, people with lupus are told that they can't participate in activities that expose them to sun and heat, but Salimah Mussani wasn't going to stop playing golf for that. According to the report, she plays under an umbrella and carries a lot of water with her.

It got me to thinking about all the things I don't do because of lupus. I've been wondering about how I'm going to finish my degree and maybe go on to get a second degree. I had come to accept that maybe it isn't possible the way things are now, but then I read about a 94 year old woman who just earned her Master's Degree.

Reading about these two women made me realize that nothing is impossible as long as you're still above ground and trying.

Time to Solve the Mystery

2007-08-02T17:40:00.000-07:00

Last week, I went into the emergency room with chest pains. This is not unusual for me. I have chest pains all the time, but I'm told to go into the emergency room if the pain is unbearable or if it lasts for a long period of time. I decided to go in because I was having two types of chest pains running concurrently. I had a crushing feeling in the middle of my chest accompanied by a stabbing pain on the left side. I've had both pains individually, but never together, so I decided to go in.

I was really embarassed because the doctor in the emergency room was really cute, and when he came in, he touched my hand, and I completely forgot why I was there. I'm sure if a black woman, born in Los Angeles had the ability to get the vapors, I would have gotten them then and there. Then I came to my senses and thought, "Oh yeah. Chest pains. Husband in waiting room. That's why I'm here." I felt like such a twelve year old.

Anyway, he tested me, said he didn't see anything emergent and told me to follow up with my doctor. My doctor thinks that it's my reflux acting up again, and he doubled my Nexium. That's the Nexium that my insurance company isn't paying for, by the way. He also has me going in for an echocardiogram tomorrow morning. Fun times!

With lupus, chest pains can mean an assortment of things. My doctor is performing the echocardiogram to cancel out pericarditis. One condition that's common among people with lupus is plueritis. That's when you get inflammation in the lining of the lungs. It's always good to check with a doctor when you're having chest pains. You just never know.

Lupie Poop

2007-08-02T06:48:00.000-07:00

For the past week, I've felt really obsessed with my own poop. It's because I'm going to my rheumatologist today, and I know one of his questions is going to be, "How are your stools?" And I want to be ready for the answer. Before lupus, I paid very little attention to what came out of me, and that was pretty much by choice, but my doctor at this point has reinforced that it's important to look at my poop.

Because of the ulcers I'm prone to get and the meds I'm taking, my poop is supposed to be a good indicator of how I'm doing. But because of my years of poop observance, I've been able to come up with this nice poop color scale that I'll happily pass on to you.

Black--bleeding in upper GI tract. Call doctor.
Red--Lower GI bleeding. Call doctor. (I get this sometimes, hemroids.)
Yellow stools -- For me, this means too much Imuran.

For those of you who are truly worried about the poop that comes out of you, here's a site from about.com.

Lupies Need Friends

2007-07-30T16:44:00.000-07:00

When I was first diagnosed with lupus, I was rather depressed, and I became withdrawn. It seemed that the worse my symptoms became the less people I wanted around me. Today, I know that wasn't the healthiest thing for me to do.

I spent years and years virtually shut away from my friends. In the past year, I'm making efforts to reconnect, but it's pretty hard work. In the best of circumstances, I'm a shy person. Now, I have lupus insecurities to add on top of that.

It's a lot of work to open yourself up, but I keep trying. Yesterday, I was in the pool at my apartment complex, and I met a woman who just moved in. It was a tremendous effort to make conversation at first, but I started to feel more comfortable after a while. Hopefully, I'll run into her again, and we can talk some more. The thing is, if you feel lonely, that leads to the depression, and if you're depressed, you likely won't feel better.

What Makes Me Stay Home From Work?

2007-07-24T11:33:00.000-07:00

If I decided to stay home from work whenever I'm in pain, I'd never go to work, so I often have to push myself to get going. There are certain symptoms, however, that will make me stay home.

1. Confusion. Sometimes, I feel so bad that I'm easily confused, and I make mistakes that if I were feeling better I wouldn't make. Like yesterday, my boss was asking me questions, and my answers made absolutely no sense to him or me. When I put Los Angeles on a FedEx envelope I knew was headed for New York, I knew it was time to go home.

2. Fever. If my temperature goes above 99.1, I head home.

3. Diarrhea. This symptom is not pleasant for me or anyone around me, so I stay home if my stomach is having issues.

4. Extraordinary pain. As I said, I'm in pain practically everyday, so I only stay home if the pain is so bad, I can't move. That pain usually involves my neck, back or head.

Once I've made the decision to stay home, I have to remind myself to get rest. That means no t.v., no internet, no reading. Well, none of things in excess anyway. I just have to remind myself not to go overboard. That's often hard for me, but it's the only way to feel better. With lupus, you have to remember to take care of yourself.

Driving Me Lupie

2007-07-23T06:59:00.000-07:00

I've already mentioned how I don't drive much anymore because it hurts to drive, and I don't feel comfortable driving with the meds I'm on. I also don't like riding in a car for extensive periods because the bumping around is painful. I'm six feet tall, and my legs get cramped up sitting for long periods in a small, confined space.

Because of this, sometimes I'll ask my husband to take me to car dealers to see if I can find the perfect, comfortable car. I found it this past Saturday. It was the Audi S8. That has to be the most comfortable car in the world. Plenty of leg room. There was an extender on the seat to give my legs extra support. The seats were very supportive without being too firm. We asked how much, and for the low, low price of $92,000.00, we could have driven off the lot with a brand new, comfortable car. Suffice it to say, the car is still at the Audi dealer.

Ninety-two thousand dollars! Oh my gosh. It amazes me that there are people in this world who can or even would spend $92,000 for a car. For half that money, I can hire two strong college students to carry me around in a recliner for a year. I'd probably need more than two. I'm kind of heavy.

After we left the Audi dealer, we went to the used car dealer to check out the used cars. Just for kicks, we sat in a Mini Cooper. That car was more comfortable than I expected, but not comfortable enough for me. While there, I did find a used Audi All Sport. It was a reasonable price and it was very comfortable. I'm going to think about it and research it. My husband was concerned about gas mileage, but I think if it works out, I'll be driving around in a used Audi.

I'll be living lupie in luxury.

Who needs sleep?

2007-07-21T12:47:00.000-07:00

I do apparently. When my doctor isn't reminding me that I need to take my pain meds on a regular schedule, he's telling me that I need to rest. The past few days, I've been suffering because of lack of sleep lag. It started Wednesday night when I couldn't sleep because my son figured that 1:00 AM was the perfect time to cook a full meal. That was followed shortly by the dog's need for attention and a walk. All said, I ended up in bed about 2 AM, and I was up by 6 to get ready for work.

Then a friend invited me to the Dodgers game. I knew that I was tired, but I have a hard time saying no to free Dodgers tickets, and on the Field level 6th row! Forget about it. I think I actually forgot that I had lupus for all of 10 seconds as I accepted the offer. The game was good, but high scoring and lasting longer than expected. Got home at about Midnight on that one. I was up and ready for work by 9 AM though. If my husband didn't wake me up, I'm sure I would have slept the day away, but he had a meeting. As it was, I caused him to be late.

Now, I've really done myself in with the bad sleep schedule because I have fibromyalgia on top of the lupus, and now I'm tired but I can't sleep. Too much pain, I suppose, but it's miserable.

It will settle down eventually. It always does. I'll call this weekend my recovery weekend.