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.

LupieKat

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.

Gaga Over Lupus

An article just came out on LimeLife.com 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.

Lupus, Pregnancy, and Raising Kids

Good day Lupies. I have to say, I'm enjoying this very long weekend. I don't want to leave my apartment. I just want to be lazy and lie around enjoying the quiet of my home and the beauty of the day. It has also been a great opportunity to catch up on the latest lupie news.

This morning I read an inspirational story about a fellow lupie by the name of Madam Low Kwee Yoong and her successful attempts to have children while dealing with lupus. She talks about her many trials and tribulations with in-vitro-fertilization, but after it all, she now has four beautiful children.

I had my children before I was diagnosed with lupus, but I now look back at some of the issues I had in my pregnancy, and I can point those issues to possible lupus symptoms. When I was pregnant with my daughter, I broke out into a rash on my forearms, and the doctors could not figure out what on Earth was going on. Now I think, "lupus rash".

Fortunately, I had my kids when I was young and before I was diagnosed. I think otherwise, I would have hesitated. Even though there really isn't any significant lupus risk for me to have kids, I would have worried. The average pregnant woman is filled with worries about the health of her unborn child. Imagine the worries that a woman with lupus goes through.

One worry is likely what effect lupus medication will have on an unborn child. These worries are often greater than necessary. There are certain lupus medications you shouldn't take if you are pregnant or plan on getting pregnant, such as certain chemotherapy based drugs. It's best to communicate with your doctor in order to know for sure what medications are safe. Be heartened that many women with lupus successfully go through pregnancies to have healthy kids.

I think the key is working very closely with your doctor to make sure you're in a healthy place in order to carry a baby.

Another concern I would have had would have been just the physical and emotional energy it takes to raise a child. My children are both grown now, but for many years I worried about the effect that lupus has had on my family. There have been Christmas dinners I haven't cooked, school events that I've missed, and things I just didn't do because I was too sick to get out of bed or leave the hospital.

In the end, I have raised strong minded and empathetic children. My daughter is amazing. She has taken care of me more times than I can count. She is smart, brilliant, and independent. I cannot imagine my life without her.

My son is bipolar and schizophrenic, and I have to say that there have been times when dealing with his issues has exacerbated my symptoms. I think that it has been particularly challenging to be there for him because of the issues I face with lupus. I have had doctors recommend finding a place to deal with him in order to take care of myself, but I couldn't bring myself to do that.

I give it my all, and I have to depend on my husband tremendously to deal handle issues. However, I must say that considering the issues that my son has, overall he is a great son. He is caring and considerate. Also, many parents with bipolar and/or schizophrenic children often worry about drug or alcohol abuse. I've never had to worry about that with Julian.

In the end, I had to accept that I wasn't going to be the perfect mom, but that's okay. I love my kids as best I can, and they know that they're loved and that's all that's important when you come down to it.

Have a great new year lupies!

LupieKat

Some Good Stuff

I've been focusing on separating pain from suffering lately.  I am in a lot of pain, but I have lots of friends and family who support me.  That helps to relieve my suffering.

Last night, my friends and I sat around playing our weekly game of poker, and it was such a great time.  I was so exhausted and in so much pain, but I didn't mind it so much because I had good company, plus I was winning!  That helps alleviate suffering too.  

My last post focused on negative lupie press, I thought I'd post something lupus positive.  The Ad Council has launched a new lupus awareness campaign.  It's running a great site where people with lupus can keep a diary of what it means to have lupus to help others.  There's also a message board where you can reach out to others.  Check it out.

Take care lupies!

Lupie Kat

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

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.

LupieKat

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.