Sunday, December 16, 2007

Lupie Eating

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.


Friday, December 14, 2007

Holding that Lupie Emotional Thread

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.


Thursday, December 6, 2007

You Know You're Lupie If...

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!


Tuesday, November 27, 2007

Today's Diagnosis, Osteopenia

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.


Sunday, November 25, 2007

Lupie Holiday Shopping

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,, and 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, 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!


Thursday, November 22, 2007

Thanksgiving, Lupie Style

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!


Wednesday, November 21, 2007

Complimentary Doctor's Appointments

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.


Monday, November 19, 2007

Don't Forget About Yourself

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!


Thursday, November 8, 2007

Fibromyalgia, Lupus, or Both?

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.


Tuesday, November 6, 2007

Before Diagnosis... After Diagnosis

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:

Monday, November 5, 2007

Okay, I did it again

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.


Wednesday, October 10, 2007

A Little Help to Get Out of Bed

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.


Monday, October 8, 2007

Is Omega-3 Good for Lupies?

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

Tuesday, October 2, 2007

I Want to Stay in Bed Today

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!


Saturday, September 29, 2007

Close to Journey's End

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

Friday, September 28, 2007

Crossing Fingers

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.

Wednesday, September 26, 2007

The Mind Goes with the Body

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.


Monday, September 24, 2007

Overall, a good day

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!


Sunday, September 23, 2007

Dr.'s News

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!


Saturday, September 22, 2007

New Technique, Better Infusion

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.

Thursday, September 20, 2007

New Digs

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

Wednesday, September 19, 2007

Drug Addicted Lupies

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!


Tuesday, September 18, 2007

Pick it Up and Push On

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.

Wednesday, September 12, 2007

It's infusion time

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.

Tuesday, September 11, 2007

Lupie Vegas Style

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 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.


Wednesday, August 22, 2007

Lupie Bones

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.

Saturday, August 18, 2007

Not Walking

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.

Friday, August 17, 2007

Lupie Hubby

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.

Friday, August 10, 2007

Quitting is okay

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.

Tuesday, August 7, 2007

Done Pouting

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.

Monday, August 6, 2007

Lupie Teeth

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.

Saturday, August 4, 2007

Lucky Lupie

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.

Friday, August 3, 2007

Inspiring Lupie

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.

Thursday, August 2, 2007

Time to Solve the Mystery

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

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

Monday, July 30, 2007

Lupies Need Friends

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.

Tuesday, July 24, 2007

What Makes Me Stay Home From Work?

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.

Monday, July 23, 2007

Driving Me Lupie

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.

Saturday, July 21, 2007

Who needs sleep?

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.

Thursday, July 19, 2007

The World is Much Better When the Meds Kick In

Mornings suck. I wake up achy every day, and I start with the same routine. Wake up, take Nexium. Wait for Nexium to kick in. Eat food, take more meds. Exercise, go to work. I usually take a pain killer sometime between the time I get in the car to go to work and when I get to work. It usually kicks in about an hour afterward. When the pain killer kicks in, I usually have about a half hour of absolutely no pain. When that happens, I get this feeling of relief, and it doesn't hurt to walk anymore.

I always have a problem taking my pain meds. I take them less often than they're prescribed. The doctor tells me that I cause myself more pain when I do this, but I don't like to be totally dependent on pain meds. Also, I honestly forget to take them until I'm really in pain.

Also, when I take them anywhere close to the schedule I'm supposed to keep, I start to feel sick to my stomach, and I usually end up skipping a dose anyway. I think I'm going to talk to my doctor about it.

I've been getting quite a bit of e-mail lately from those of you out there dealing with lupus. Thanks for writing. Your words help a lot.

Wednesday, July 18, 2007

Friends and Family Can Make Me Sick

I mean that more literally than figuratively, of course. I'm on quite a few medications that compromise my immunity, and if there's a bug going around, and I catch it, it can make me sicker than the person who gave it to me. A few years back, I caught the flu from a friend. As a result of that, I got a yeast infection in my esophagus that lasted for several months. I lost fifty pounds, and the doctor worried that I wasn't going to get over it, but luckily, I did.

Because of that experience, I try to avoid people who are sick. My husband Geoff is pretty hypervigilant about it. He actually yells at people to stay away from me. I try to tell him to calm down, and he yells at me. He usually says something like, "I'm not going to lose my wife because some careless person wants to hug you." So I just shrug and leave him to his yelling. I think it helps him have control over something where he has very little.

I bring this up because my brother in law, Ron has come into town from Virginia to stay in L.A. for a month. He's taking some air force class or another, and he wanted to visit. It was great. We walked up to the beach for a bit and then we went out to dinner. After that, Ron and Geoff and the kids went out for ice cream, but I walked home because I was tired. Sometime during the evening Ron asked me if he could borrow my Chapstick and I said no because I don't share personal items with people because of the germs. I felt bad at the time because I felt like I had a germ phobia. But then after they came back from ice cream, Ron tells me that he's on the tail end of bronchitis. Geoff says that Ron told him this at ice cream, and he's already yelled at him. I was actually surprised that Geoff let Ron back into the apartment after ice cream!

After Ron told me about his bronchitis, I said, "I'm so happy I didn't loan you my Chapstick!"

With lupus, you really have to be careful with friends and family. They are the ones who will give you a bug before anyone else. I think it's because of the comfort level. It kind of slips their mind that you are immune compromised, and they just don't think about it. Luckily, I have Geoff to think about it for everyone in my life.

Sunday, July 15, 2007

My lupie job

I have a great job. I work as a paralegal at It's a dot com in Westwood, Los Angeles. I'm the sort of person who always has to do something. I've been at PriceGrabber for close to a year now. I didn't think I'd be able to handle the schedule. I honestly thought that after a few months, I would tire out and end up back to part time work or at home.

Luckily, I work with a very understanding attorney. He's the greatest actually. About a few weeks into my job, my doctor ordered infusion treatments two times a week for three months. I thought that would be it for me, but Carlo was great. He said, "The important thing is that you feel better." He's always so supportive. He's sympathetic without pity, and that's what I appreciate most. Last week, I walked into his office, and he said, "Do you feel okay?" I said, "No." He replied, "I didn't think so because you look messed up." And we both laughed.

Sometimes I do feel self conscious about my condition. Last Thursday we had a company wide meeting in a theater at a museum. I had to find out what sort of seating was available before hand because a two hour meeting can be pretty painful if the seating is uncomfortable. Then I had to make sure to have a bottle of water for the pills I was due to take in an hour. Also, the dry air gives me coughing fits.

The hardest part of the whole thing is when I feel self conscious about things that I can't do, like walking up or down stairs. My knees can barely handle that. I was seated in the back row because to sit anywhere else would mean to deal with stairs. When that sort of thing happens, I usually have someone who either asks me what's wrong or thinks I'm being antisocial.

It didn't make things any easier because I work with my husband, and he shows up at the meeting, passes me by, heads down the stairs and starts looking for me halfway down. I can tell that he's trying to figure out where I am, so I start calling for him. He turns around and says, "There you are. What are you doing up there?" I give him the evil eye. He slaps his forehead and say, "Sorry. I forgot." At which point, I get about half a dozen people saying, "Yeah, what are you doing up there?" I didn't get a chance to explain because the meeting started immediately thereafter.

Aside from the minor inconveniences such as that one, I love my job. I do feel tired a lot of the time, but I enjoy the meaning of purpose it gives me. I appreciate that when I don't feel well, my boss understands it. I appreciate that noone ever makes it look like a chore to deal with accommodating my needs. I've never had that in a job before. I'm glad I finally found it with PriceGrabber.

Another great thing about my job is Melinda. She read my blog and noticed that I liked lemon cookies and baked me a batch of the best lemon cookies I've ever had in my life! Thanks so much Melinda. I also want a diamond necklace, a new car with comfortable seats, and hot looking wig!

Friday, July 6, 2007

Forgive Yourself for Broken Promises

Okay, so after I promised myself that I would write in blog no matter how badly I felt, I stopped writing because I felt too bad to tell others how bad I felt. I can't go back and change it, so I'll move on and try better next time.

I've been feeling pretty wiped out since July 3rd, and I can't wait until my workday is done in order to go home and go to bed. My next vow will be to write about how I deal with working with lupus, so look for it soon.

Monday, July 2, 2007

The tongue has it

This morning I woke up with ulcers in my mouth. This is the one symptom that makes me slow down and stay in bed because if I don't I just get worse. If it gets worse, I'm back at the oral specialist, and he's examining my tongue for suspicious lesions, and I'm not up for that emotional strain. It's just one thing I can't push myself through. That means that today, I'll do a little work from home and spend the rest of it looking out my window and sleeping.

Sunday, July 1, 2007

Yesterday morning was a very tough morning for me. For the past week, I've been pushing through a pretty good flare, and Saturday, it all caught up with me. No matter how I feel, I try to force myself to get up at least once in the morning, so yesterday I got up and went to the hot tub in my apartment building to soak. That helped a little bit, but I still wasn't quite better. I didn't push myself too hard for the rest of the day. I just rested a bit and watched t.v.

On my web site, I list reasons to get out of bed in the morning, and I really push the concept that you have to force yourself to get moving sometimes, but that doesn't mean that you shouldn't rest when you need it. With lupus it's important to keep that balance between rest and exercise. If we stay in bed too much, it's not good, and if we push ourselves too hard that's worse.

Sometimes it's hard to figure out if I'm just getting the rest I need or if I'm just giving in. I pretty much measure my day. If I'm going to have a busy day, I'll take the extra time and rest a bit more. If I have nothing going on for the day, I will force myself to get up and exercise a little bit.

Saturday, June 30, 2007

We Need Friends

Last night, I had a gathering of sorts. I hesitate to call it a party because I feel that a party puts too much pressure on me and everyone involved. With a party, you have to make sure to invite certain people. People feel obligated to come, and a lot of the time, the atmosphere is stilted.

With a gathering, you can say, "Hey, I'll call Ellen, and we'll have a few people over to listen to her play guitar." Then you can invite people as you think about it, and if people like the concept of coming over, they do or don't as they choose. That's not exactly how my gathering came together last night.

I'm a poet,and what actually happened was that my friend's mother was in town, and she wanted her mother to see me perform. She had asked me to find a booking, and I pretty much dropped the ball, so I suggested that they come to my place, and I'd read poetry for them in my living room. Then I started feeling self important in doing that, so I invited a few friends to come over to read, as well. I invited Teka Lark, a great poet. She's known as my evil twin. Her boyfriend Randall Fleming. He's a publisher and poet, as well. I also asked Ellen Silverman. She's a great guitarist and songwriter. Lastly, I invited my favorite poet James Maverick. I also had my two favorite people Tracy Jensen and Dede Mertz and her mom. We also had assorted teenagers belonging to the respective parents wandering around. I called it "Bring a Talent Friday". Didi's talent is being a supportive friend, and Tracy said her talent was being hostess since I'm not very good at that stuff. She arranged the appetizers, drinks, etc. She answered the door. Me, I just pretty much tell people to come in and figure the rest out themselves.

Bring a talent Friday was pretty fun. We listened to great poems and music and talked about important and fun things. I struggle with depression quite a bit, and it's a challenge for me to be sociable with others. Especially when I spend a lot of time feeling tired and achy. I think that's another reason why I hate the idea of a "party". With a party, you need to be engaging. You need to be set to happy hostess. It's just so emotionally draining.

When you have lupus, it's important to have friends in your life. Sometimes, I don't feel up to it, but I notice that when I don't see my friends for a while, I feel worse, so I try to connect with people even when I don't feel like it. Usually I feel that once my friends are here, I'm happy they came.

Friday, June 29, 2007

My Lupie Marriage

I was mad at my husband a few days ago, and I don't even remember why. I guess that's my lupus brain fog. I was short with him the whole day, but at the end of it he brought me flowers.

Lupus has changed the dynamics of our marriage. I had always been the nurturer and the caretaker sort. My husband, Geoff, isn't really a nurturer. He's logical and reasonable. He discusses theories and reasons. He doesn't kiss scrapes or make soup when someone is ill. That was my job. I once had a friend say something to the effect of, "You and Geoff will be happy for the rest of your lives as long as he thinks he's the most important person in the world and you agree." And we were happy for a long while like that until lupus hit.

When I'm sick, I want to be nurtured. I want my husband to do things to help me feel better. Geoff had the hardest time seeing the logic in that. He didn't understand how having soup in a special bowl was any different from soup in any other bowl, or why I needed lemon cookies from the Farmer's Market. He never bought me flowers. Flowers were a waste of good money, but now he sees that if it's something that makes me smile, it's not a waste of money. He's changed quite a bit.

I think the reason that we manage at this point is that we both acknowledge that my having lupus isn't easy for the other. He knows that it isn't easy for me to be tired and in pain, and I know that my being this way isn't easy for him. Because of this, we try to give each other the benefit of the doubt when we're upset with each other. Or I just plain forget why I'm upset and we move on.

Thursday, June 28, 2007

Getting Around Lupie

I've mentioned before that I don't like driving. The first reason is that I'm on so much medication, I don't feel confident in my driving ability. Another reason is that it's just painful. My husband and I work at the same company, so a lot of the time we carpool. I appreciate it, but sometimes I get frustrated because I'm not the one driving. I'd rather take the streets. He likes the freeway. Also, he's a late person. He likes to get to work late and leave late. I want to get to work early and leave early.

For people with lupus, getting around can be difficult. My half sister Wanda (we have the same dad) also has lupus. Her lupus has progressed farther than mine. She has kidney and liver involvement. Anyway, Wanda was telling me how she got a Suburban for Christmas, but at this point, she can't even drive it. In order to get around, she relies on her husband and her mother. Her husband actually quit work to take care of her. She lives in St. Augustine, Texas, so public transportation probably isn't the greatest option there.

I get around on public transportation much of the time. I'm in the middle of Los Angeles, so the bus system is decent. When I lived in the Valley, it was challenging. The bus system is horrible out there. I actually took the bus yesterday because my husband was meeting a friend for dinner. It's fast and reliable. I do have problems with the bus when the pain is extreme. Every pothole makes me cringe.

When I feel really bad, I'll call a friend to give me a ride. I used to be embarassed to do that, but then I realized that friends really want to help you when you're in need. People want to be needed, and with lupus we need a lot of people, so never be ashamed to ask for that ride.

Wednesday, June 27, 2007

Hats On for Summer

About 30% of people with lupus suffer from sun sensitivity, and I'm one of them. When I'm exposed to the sun, it feels as if someone is sticking about a hundred lit matches to my skin. It also causes me to break out into a rash on the sun exposed areas. I also get a malar rash. (A butterfly shaped rash on my cheeks.) Lastly, it makes me feel ill, as if I've been poisoned. If I'm in the sun too long, I'm guaranteed to spend the rest of the day in bed. Also, I've read that for people with lupus who have sun sensitivity, it can cause your flares to be worse, so I try to limit my exposure to the sun as much as possible.

I do this by wearing 45 SPF sunscreen and avoiding mid-day sun, but when I can't avoid the sun, I wear sun protective clothes during the middle of the day or carry an umbrella. My favorite thing to do is wear hats, and I just found the coolest hat at Forever 21! this weekend. I'm 38 years old, six feet tall and 170 pounds, so I normally don't go to Forever 21! for myself. It is my daughter's favorite place to shop, and that's where she dragged me this past weekend. I'm glad she did because I love this hat! When I tried it on, my daughter, Aja's her name, said "Oh my gosh mom. That is just too J-Lo." I replied, "Cool. I'm buying it!" She then replied, "Okay. If you say so!" This hat isn't certified as sun protective or anything, but it does have a tight straw weave. I think the sun would have a hard time finding it's way to my face through that brim!

With this hat, I'm Living Lupie J-Lo Diva Style.

Tuesday, June 26, 2007

Do I Really Have to Get out of Bed Today?

Every morning when I wake up, I stress about the first steps that I take when I get out of bed in the morning. Is it going to hurt, and if so how bad is it going to hurt?

This morning, it was really bad. I thought about just getting back into bed, but with lupus, no matter how you feel, it's better to get out of bed and get moving. I wish I could be one of those happy lupus people that I read about. The ones that no matter how bad they feel, they manage to smile and say, "I'm just happy to be alive and have people in my life who love me." I admire those people. I really do, but there are days I want to slap them. This is one of those days.

The people who love me get on my nerves when I feel like this too. When I take that first step out of bed in the morning to walk to the bathroom, my husband inevitably asks, "Are you okay?" My first thought is to scream, "Do I look okay?! No! No, I'm not okay! Get a clue!" But the reasonable part of me somewhere in my brain says, "No Katerina. You don't want to yell at him. It's just the pain, not him." So, I just nod my head and limp into the bathroom. I take my Nexium because if I don't, I could get very sick. Ulcers, yeast, no fun at all.

Then I run a warm shower. That's what makes me feel near human. The warm water soothes the pain in my joints, and I feel ready to function for the rest of my lupie day.

Monday, June 25, 2007

Safe to Make-up?

As a general preference, I don't like make-up. In my younger days, I almost never wore the stuff. I felt it made my skin itchy, and my face never really feels clean when I wear make-up. I just like to be me as me.

However, the me of late tends to be splotchy some days. Other days, I could have a slight malar rash. I get dark circles under my eyes. Right at this moment, I look like someone punched me in my right eye. Also, as my bilirubin level goes up, my skin looks a little yellow. On days like this, I will opt for make-up. Usually, the sicker I feel, the more likely I'll wear make-up. Especially if I'm going to work because I really don't want to look sick at work.

Even wearing make-up is a project for someone with lupus. My skin reacts to certain types of make-up, so I try to use as little as possible to get the result I want. Usually that just means foundation and mascara. I'll then coat my lips with SPF Blistex and follow that up with lip color. I wear a foundation with sunblock because that helps give me a little extra protection from the sun. My malar rash isn't that bad, so I use regular make-up. I hear that there are great make-ups out there, like Fallene Total Block. It's made particularly for those with lupus.

So on days when I feel really bad, I like to wear make-up because when I look in the mirror, I don't look as bad as I feel, and I can convince myself for a few minutes that I'm in perfect health, and it boosts my attitude for the rest of the day.

Sunday, June 24, 2007

The pain of being in pain

Friday was a busy day, and generally with me and lupus that means a painful day. Normally, I take Lortab for pain, but my son was graduating high school on Friday, and that meant I had to drive to his graduation. That also meant no pain meds while driving. Usually my husband drives for me, but he had to go to work after the graduation which meant that I was on my own.

First I went to the doctor (primary care doctor. I feel I have to specify which type since I have one primary care doctor and about six specialists) and my prediction about what he'd say about my hair loss was correct. He said that he could send me to a specialist for scalp injections, but I'm passing on that option for now. I talked to him about my pain which is generally better. It's moved from unbearable to bothersome. A few months ago, my doctor suggested acupuncture, and that has been mostly helpful. The acupuncturist provides massage treatments, and the doctor gives me injections. Before those treatments, I was barely able to walk. These days, I'm able to walk without grimacing in pain. I told my doctor that I've had a headache for several days, and he gave me lidocaine injections in my shoulder muscles because he said I had tremendous tension there. I hate needles, but I get these shots because the pain of the needles are nothing compared to the pain of lupus.

After the doctor, I drove my son up to the graduation ceremony. My son is bipolar with schizoeffective disorder. To discuss the challenges of that is a blog in and of itself, so I really won't get into too much here, but suffice it to say, getting him through school has been a struggle. It was a day that many believed would never come, and it was a very happy, tear filled day for me.

Driving is a very painful task for me. I hate to do it, and on Friday I had to drive from Marina del Rey (where I live) to San Fernando Valley (where I lived up until about two months ago) for my son's high school graduation. By the time I got up there, my headache was slightly worse, and the pain was horrendous. I was barely able to walk when I get out of the car, but you grin and bear it, and that's what I did. No matter what's going on, I always try to make the times with my kids about them and not about my pain. After graduation, we went out to sushi. My son's favorite pastime. Then he said he wanted to just go home and "chill" with his friends.

By the time I got home, it was all I could do to make it up to my apartment and straight to bed. I've noticed that a lot of my lupus issues can be alleviated with just a little more sleep. I slept a few hours, and the headache and pain were a bit more manageable. By the time we had dinner, I was close to recovered.

All in all it was a pretty typical day of living lupie.

Sunday, June 17, 2007

No hair yesterday, hair today

One of the many symptoms of lupus is hair loss. This can be caused by active lupus itself, or by many of the drugs used to treat lupus. Considering that my hair loss began with the increased dosage of Imuran, I would guess that my reason for hair loss is the Imuran I'm on, but I'm not a doctor, and I'm not even permitted to diagnose myself. I wish I could. I'm one of those people who believes that I'm the best expert on everything. It's amazing that I have all this medical confidence without a single day of medical school, but here we go. I'm diagnosing myself as suffering from hair loss due to medication. My doctor would likely disagree and tell me my lupus is active, but I'd like to live in denial a little bit longer before I have to deal with yet more pills I truly don't want to take but will take in the end.

I've never really considered myself a vain person. I've never spent much money on make-up or hair care. I usually just hop out of bed, shower, and go on with my day with a tube of SPF Blistex in my pocket. That's pretty much my beauty regimen for the day. Since I noticed that my hair was falling out, I've become very vain. I feel guilty about it because as my lupus symptoms go, I'm feeling pretty decent. I'm achy, but not unbearably so. In the past, I've been in so much pain, it would hurt to walk. I've spent time in a wheelchair because I couldn't handle the weight of my own body on my feet. At this point, I get around pretty decently, and if the price for that is my hair, so be it. So this is the voice from the rational and grateful to be alive Katerina.

The vain and shallow Katerina, however, quietly pouts that her hair is going away, and searches her mind on what to do to save what's left of her quickly departing hair. When lost for what to do, I read and I research. In doing this, I find out from the fine web site put up by the University of Maryland that half the people with lupus suffer from hair loss and that the hair usually grows back. That's nice to know. That my hair will come back... eventually... some day... but when? Apparently when I'm over my so-called flare. (Remember, I'm still in denial about being in a flare. Good thing I have a doctor who deals really well with denial.)

In searching for options, I've found that I can get a hair transplant. I don't think I'm that bad off yet. I also hate to try anything semi-invasive because such a thing can risk a flare. There seems to be organic shampoos I can try. I think I'll look into that. Sometimes I just feel so ugly, and I hate it.

Yesterday, I decided to go to the Cutting Edge Salon in Marina del Rey for a manicure and pedicure. It had been better than two years since I had something like this done, so I thought I'd treat myself. I figured, at least my nails could look pretty. While I was there, I thought it might be nice to get my hair done, but figured the odds of this salon servicing African American hair to be highly unlikely, but I figured in the least, I could get a shampoo and figure out the rest later, so I asked, one of the beauticians, Heidi, in all her blond glory if she could do something with my hair, and she replied, "Uh huh, I'm an ebony hair specialist." I never figured I find one of those in a little shop in Marina del Rey, but I did. Heidi did an amazing job with my hair. She braided it all over, and then sewed in hair pieces so that my hair didn't look so thin. She made my day. She is now my favorite person in the world.

So, right now, I'm not feeling so ugly, and I'm feeling very relieved. Heidi suggested I should try wigs. She says they're very much in fashion these days. I think I may consider it, or may say whatever with it all and just shave my head, but for now, I can obsess about something else, like my weight. Life's back to normal.