Household Help

Last week, I was talking to my sister, the coolest lupie ever, and she told me that she's getting someone to come in and help clean her house. She said that it was a special service through some government facility for the disabled. I thought this was pretty great.

Many lupies have a hard time cleaning their homes. Not even considering the pain aspect of bending over and lifting things, there's the breathing factor with using all the chemicals necessary to have a clean and sanitary home. I, myself, can't use any kitchen or bathroom cleansers without sending myself into an asthma fit.

I hire a housekeeper to come in once every few weeks to clean my bathrooms and kitchen and to do some vacuuming. If you can't afford something like that, try looking into what sort of public assistance is available for the disabled in your area.

What it takes

As you can read from yesterday's blog, I was having dizzy spells. Whenever I have an unusual health problem, I do what any conscientious lupie should do. I make calls. I don't like to bug my doctor unless it's absolutely necessary, so I call the nurseline, which is a feature of my United Healthcare insurance. I can call the nurse line and ask them questions about pretty much anything health related.

So I call the nurseline, and we have a nice little chat about my symptoms. The nurse tells me I should page my doctor. I told her that I felt fine aside from the dizziness, and she said it was best just to page the doctor, so I did. My doctor tells me he wants to see me first thing in the morning to look me over. I tell my husband that I have to go to the doctor in the morning and I tell him the time.

The next day, my husband pretty much is a jerk about driving me. He doesn't want to drive me. He thinks I can drive myself. He says he has to get to work. We both work at the same company which is a very understanding company. If he says he's taking me to the doctor, absolutely no one would have a problem with that. I said that I didn't want to drive myself with dizzy spells. He said I shouldn't have a problem. I pretty much forced him to drive me.

Today, he tells me that he believes I over reacted about the dizziness. I don't see how I did considering I did exactly what I was supposed/told to do.

When he says things like that, I honestly believe that he doesn't understand what it takes for me just to get through a day. I know that in many ways I'm lucky. I'm not as bad off as other lupies such as my sister, but it still isn't easy. Every day, I'm in pain. I deal with rashes, asthma, anemia. Infusions two times a week for months at a time aren't easy. The myriad infections, endoscopies, colonoscopies.

Every single day is an effort. I force myself to be positive and have a bright outlook, and for my husband to think/treat me that way just hurts.

Well, as you can see, I just needed a good vent. Now I need to get back to work.

Have a lupie day!

LupieKat

Feeling Dizzy

So, I've gone from itchy to dizzy. There should be a set of Lupus dwarfs like the dwarfs in Snow White. There should be Itchy, Dizzy, Sleepy, Achy, Rashy, Foggy (as in foggy brained), and Moony (because he's allergic to the sun). It took me a while to think of that one. My first thought for the name of that one was the opposite of light. To avoid obvious racial implications, I went for Moony.

So today, I'm dizzy. It actually started last night when I was driving home from work which is a scary thing. I didn't know what to do. Do I pull over? And if I do, then what? Do I call someone to pick me up? Do I wait for it to pass? I was at a loss. Finally I just soldiered on through and made it home with no incident, but I was worried the whole time.

I called my insurance company's nurse line. I often call the nurse line in order to avoid being a nag with my doctor. If the nurseline tells me to call the doctor, I will. I called my doctor, and he asked me to come in this morning. He looked me over and determined that I likely have an inner ear infection.

This means no driving for me until I feel comfortable that the dizziness has subsided. My husband seems to think I can still drive while dizzy, but I just don't think it's a good idea. I think I will avoid getting a DWD. (Driving While Dizzy).

Take care all and Live Lupie!

LupieKat

Feeling itchy!

Last week, I was down with a cold. Actually, I couldn't figure out if it was a cold or the tetanus shot I had the week before. I don't react very well to tetanus shots. The one I had ten years ago got me pretty sick. My arm broke out into a rash and I had a fever and asthma on top of it.

This time, my arm didn't get rashy, but I had a large hard lump in the injection site that was about six inches in an oblong diameter. I then got sick with the cold. It was a tough cold. Had a hard time shaking it. I'm still feeling pretty tired from it, and today, I've broken out in a rash from head to toe.

I just took some Benadryl. Hopefully, that will help settle down the rash. I'm itchy and miserable, so I think I'm going to cut it short and try some meditation.

Just another part of living lupie!

LupieKat

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.

LupieKat

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

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