Tuesday, December 16, 2008

No Empathy From Me

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

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

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

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

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

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

Have a lupie day.


Tuesday, December 9, 2008

Keeping Warm Lupie Style

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

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

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

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

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

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

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

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

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

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


Thursday, November 20, 2008

T'is the Season for Infusions

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

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

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

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

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

Take care and live lupie.


Sunday, November 16, 2008

Forget about lupus

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

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

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

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

Have a Happy Not So Lupie Day.


Saturday, November 15, 2008

On the road again

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

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

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

Have a lupie day.


Thursday, November 6, 2008

Healthy Eating

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

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

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

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

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

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

Have a lupie day!


Monday, November 3, 2008

What helps?

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

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

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

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

Have a lupie day.


Thursday, October 30, 2008

Is it depression or the blues?

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

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

Take care.

Live lupie!


Wednesday, October 22, 2008

Managing the Pain without Painkillers

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

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

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

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

Wednesday, October 15, 2008

Finding the Lupiest Candidate

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

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

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

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

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

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

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

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

Take care. Vote smart. Live lupie!


Monday, October 13, 2008

Household Help

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

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

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

Thursday, October 9, 2008

What it takes

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

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

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

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

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

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

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

Have a lupie day!


Wednesday, October 8, 2008

Feeling Dizzy

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

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

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

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

Take care all and Live Lupie!


Monday, October 6, 2008

Feeling itchy!

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

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

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

Just another part of living lupie!


Monday, September 29, 2008

Lupie Sister

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

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

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

Take care lupies.


Tuesday, September 23, 2008

Learning to Deal with Periods

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

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

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

Take care lupies!

Lupie Kat

Tuesday, September 16, 2008

Lupus and Fluorescent lighting

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

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

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

Take care.

Live lupie.


Friday, September 12, 2008

Can Hardly Breathe

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

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

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

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

Tuesday, September 9, 2008

It will be okay

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

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

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

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

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

Take care and live lupie!


Monday, July 28, 2008

Stop Writing to Yourself. Write someone else.

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

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

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

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

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

Take care.

Live lupie!


Tuesday, July 15, 2008

What Exactly is a Healthy Does of Paranoia?

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

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

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

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

Take care all.

Live lupie!


Thursday, July 10, 2008

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

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

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

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

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

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

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

Have a lupie day!


Tuesday, July 8, 2008

Sunny Days

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

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

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

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

Enjoy the summer, and try to enjoy living lupie!


Wednesday, July 2, 2008

Grief and Lupus

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

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

Take care everyone.

Live lupie!


Saturday, June 21, 2008

Who's the Mother Anyway?

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

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

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

I am very lucky.

Take care. Live Lupie!


Thursday, June 19, 2008

Too Confident in Feeling Good?

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

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

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

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

Take care all and live lupie!


Wednesday, June 11, 2008

Are Seizures Common?

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

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

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

Take care and live lupie!

Monday, June 2, 2008

Feeling Twitchy

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

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

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

Have a great day Living Lupie.


Sunday, June 1, 2008

Walking and walking

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

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

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

Today's tip. Always manage the pain.

Have a great day living lupie!


Monday, May 26, 2008

You Can't Take a Holiday from Good Health

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

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

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

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

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

Tuesday, May 13, 2008

Long time no post

Hi Lupies:

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

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

Honda Civic
Toyota Camry
Infiniti M Series
The Volvo SUV

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

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

Wishing you all a pain free lupie day!