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.

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.

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.

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.

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.

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.

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.

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.