Sunday, June 20, 2010

Love Simple

Today I'm feeling pretty down and out. I was up most of the night coughing and wheezing, and I woke up in full fledged pain. I've rubbed my joints down with Walgreen's ice blue gel, and I've started my regimen of prednisone, so hopefully I'll feel better soon.

I feel so guilty right now because I forgot to tell my husband happy Father's Day. Instead, I sent him out to get breakfast and didn't remember until I after I ate. I apologized, and he just smiled and said that's okay. I said, "I'm the worst wife ever." He said, "No. You just have lupus." What's even funnier is that I thought Father's Day was last Sunday and gave him his presents then. I'm just completely off, but I guess that's what he gets for marrying a lupie woman.

I just downloaded and watched the movie "Love Simple" through iTunes. I loved it. The main character is a woman with lupus who meets and falls in love with a guy who is taking care of his ailing father. The movie addresses some of the many stresses of being a woman with lupus and the guilt and anger associated with it.

It's definitely a great lupie movie. If you can, download it from iTunes by June 21st. Thirty percent of the proceeds go to the Lupus Foundation.

Have a Lupie Day.


Sunday, June 6, 2010

Sick 48 hours

I haven't been feeling too well for the past couple of days. The cause could be one of two things or two things. On Thursday night, I went to see Shakespeare in the park, and I was bitten about a dozen times by mosquitos. The bites puffed up pretty severely. In reading about mosquito bites and lupus, I discovered that many people with lupus have severe reactions to insect bites. Growing up in Los Angeles, I never really had to worry about mosquito bites, but now that I live in Missouri, it is something I need to think about when I head outdoors.

Friday morning, my daughter and I went out on our run together. I was wearing sunscreen, and it was early morning, but the sun really bothered me. I think my sunscreen might have been expired. Let this be a reminder to my half dozen readers out there to get new sunscreen.

Friday night, I was achy and had a fever. Yesterday, my ankles were really swollen, and I woke up this morning pretty stiff.

I told myself that I was going to stick to my exercise schedule no matter what. Today is my jogging day. Even feeling bad, I thought I'd just move a bit slower than usual. It worked out pretty well. I actually jogged farther than I did on Friday. The swelling actually went down some. I think the sweating from the exercise helped.

I read in the Nashua Times about Kevin Kalhori, a lupie who is cycling across the country to raise lupus awareness and money for the Lupus Foundation. Kevin's story is the same as most of us who have to deal with lupus. He has spent days stuck in bed. He's done the chemo and the steroids.
I've gone from being bedbound to running a bit over a mile. Even so, I cannot imagine bicycling across the country. I think I would be worried about all the things that could go wrong when dealing with something like lupus, but Kevin has faith in himself, and sometimes, that's all that you need.

If you want to follow Kevin Kalhori's travel across the country by bicycle, check out his Live Free and Ride blog.

Wednesday, June 2, 2010

Gaga Over Lupus

An article just came out on that says that Lady Gaga confirmed having borderline lupus. I wonder if this means that having lupus is going to become one of those celebrity fads like adopting children from foreign countries? Lupus can definitely use the attention. Many people suffer from lupus and if it helps foster awareness and understanding, that will be a great thing.

I'm pretty excited right now because I just completed my 39th day on my Wii Fit, and I feel tremendously better. Actually about a week ago, when I was using the Wii Fit running feature, I noticed that I had run over a mile and a half, and I thought to myself, "Hmmm. I wonder how that transfers to real world running?" I tossed on my athletic shoes, strapped on my heart monitor, filled up a bottle with water, asked my daughter (an avid runner) to tag along in case something went terribly wrong, and hit the running trails of Forest Park.

We took it very slowly. My daughter said that when you're starting off, it's better to run a little and walk a little, so we would run for a minute and a half and walk for a minute and a half. Today, I'm happy to report that I managed this for 1.888 miles, and this is my third attempt in a week. The first attempt I ran a little over a mile and the second attempt about a mile and a half. I'm very excited considering that I haven't run prior to these times in over 20 years when my doctors told me I couldn't run again.

I still have a bit of pain everyday, but I realized that pain is just a part of my life. I can either be in pain with a fit body or in pain with an unfit body. So no matter what, I drag my tail out of bed everyday to get on that Wii Fit.

My last post said that I fantasized about running a marathon. I think because of this, my daughter has it in her head that I can do this by summer's end. That is a bit of an ambitious endeavor I think. I will be happy if by the end of the summer I can run for a continuous five minutes without needing to take a walk break.