Monday, September 29, 2008

Lupie Sister

I spoke to my sister recently, and she isn't doing too well. She's about sixteen years older than I am, and she has lupus too. I think the whole thing may be getting the better of her right now. She really doesn't have energy to talk. She's suffering from congestive heart failure, and her kidneys are giving her problems as well.

I feel really scared for her. I don't know what to do. Part of me feels guilty because I'm on a healthy streak. Part of me feels scared because I'm wondering if I'm looking at my future. They say that no two people have the same lupus, but what if that person is related to you? Are you likely to have the same lupus?

I think the hardest part is that she lives so far away in Texas. If I could go visit her from time to time, it would be easier, I think.

Take care lupies.


Tuesday, September 23, 2008

Learning to Deal with Periods

I have grown to realize that my lupus symptoms are correlated with my menstrual cycle. This means that for one week out of the month, I'm just going to feel like crap no matter what I do to try not to.

Now that I've accepted that my period is just going to be a challenge for me, I allow myself to feel crappy for that one week. This means that I allow myself to sleep a little longer, take more breaks in the day, and take pain relievers. I usually don't need them anymore, but around my period, I'm just plain miserable.

I have to say, exercising has given me more energy. It's just my periods I haven't quite overcome, no matter how strong I feel. I'm on my period now, and it hurts to walk, my cheeks are lupus butterfly pink, and I'm exhausted. It's just the way of the Lupie World.

Take care lupies!

Lupie Kat

Tuesday, September 16, 2008

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.


Friday, September 12, 2008

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.

Tuesday, September 9, 2008

It will be okay

My friend Tracy called me last night because a good friend of hers has been diagnosed with lupus. It got me to thinking about when I was first diagnosed. I remember feeling relieved. I'd been feeling sick for so long, I was sure that I had some deadly disease and no one would figure out what was wrong with me until my autopsy.

When I was diagnosed, I wanted to thank my doctor. I think I probably did thank him. It's hard to remember. It was so long ago.

When someone gets diagnosed with lupus, that person could feel a whole range of emotions. Tracy said her friend was upset and worried she would die from lupus.

It's very common to be scared and think that lupus is a death sentence. The truth is that actually most people with lupus go on to live a normal lifespan. Lupus in most cases is very inconvenient and uncomfortable but not deadly. The key to successful lupus life management is seeing your rheumatologist or other doctor regularly and following your course of treatment as directed. The prognosis in lupus is mostly dependent on whether or not you have organ involvement.

The key in not being scared is talking to your doctor about your fears. Say to your doctor, "I'm scared this thing will kill me." Your doctor should and will most likely be frank and honest about your condition. In my experience, if something is going to kill you, your doctor will let you know. If your doctor hasn't told you that your prognosis is poor, it likely isn't.

Take care and live lupie!