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!