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.
LupieKat
Sunday, November 16, 2008
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.
LupieKat
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.
LupieKat
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!
LupieKat
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!
LupieKat
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.
LupieKat
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.
LupieKat
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!
LupieKat
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!
LupieKat
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.
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!
LupieKat
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!
LupieKat
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