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.