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.