Mayhem

There's an insurance commercial -- I think it is for Allstate -- where this guy, "Mayhem," goes around making trouble to unsuspecting victims.  It is always some random "freak accident" like driving behind someone with a Christmas tree on their roof and he pulls it loose.

I feel like lupus is "Mayhem."  It strikes unpredictably and in ways you wouldn't expect.  My symptoms haven't been too bad, but last week I had pain in my knee, yesterday it was my right thumb, and today it is my left wrist.  I feel like lupus is just running around my body trying to figure out what kind of havock it is going to cause next.

- a little lupie -

Edit: Yes, it is Allstate...here's some of their commercials:

Lupie Meteorology

I'm feeling better today.  I got nine hours of sleep last night, and although I still have a little joint pain, it is nowhere near as bad as it was last night.

I was also wondering if my joint pain might have something to do with the weather.  It has been very humid lately, and I've heard stories of people's joints telling them when a storm is coming.  The jury seems to be out on whether this is just a myth or if there is science to back up the theory.  I'll start paying closer attention to my symptoms and the corresponding weather.

- a little lupie -

Ouch

My knees are killing me.  I brought the cane out of the closet because it is painful to walk...especially going up and down stairs.  The worst part is trying to look normal in public without wincing too much.

This is probably my fault because I have been pushing myself and not resting as much as I should be.  I got caught up making a Shutterfly book online last night and ended up only getting a few hours of sleep.

I bumped up my prednisone to 2 mg today.  I'll try that for a few weeks and see if it helps.

Off to go lie down now...

- a little lupie -

Be Kind to Your Pharmacist

I used to work in a pharmacy and would always get asked why the $%^@ it took so long to fill a prescription.  I mean, all they do is count pills, right?  This blog post does an excellent job explaining:

http://drugmonkey.blogspot.com/2006/08/i-realize-today-ive-done-you.html

Just a reminder to be kind to your pharmacist!

- a little lupie -

Cousin It

Cousin It is back...meaning I am shedding hair like crazy again.  :(

- a little lupie -

Sophisticated...moi?

In my last post, I mentioned that my lab results weren't too good.  When I went in for my appointment with Rheumy, I think he was surprised when he asked how I was feeling and I said I felt okay.  He went over my high ds-DNA, which is much higher than it has been in the past.  My WBC and RBC counts were low, which is somewhat normal for me.  My C3 complement, which I mentioned in my last post, is also low, which is often seen when lupus is active.  None of my prior labs had shown low C3 complement, so this is something new for me.  I also showed small amounts of protein in my urine.

Overall, though, since I was feeling okay, we decided to keep my medication the same and just keep an eye on things.  Rheumy thinks that being on the low dose of prednisone is helping to keep the lupus under control.  He thinks it is better for me to be on a low dose rather than trying to get off and risking a major flare.

I did ask him if it would be okay for me to self-adjust my prednisone dose based on my symptoms, and he said that for me, since I am a "sophisticated patient," he would say okay.  LOL.  He warned not to jump up and down too often and to stay at a dosage for a few weeks before changing again.  He said that some patients try to jump up to 20 mg then drop back down again too quickly.  I reassured him that I was only thinking about small changes, like bumping up from 1 mg to 2 mg if I am having a lot of joint pain.  Anything major, I would call in.

My last question to him was what was considered "remission."  He said that different people have different definitions -- to some, it means no symptoms and no medication.  To others, it is okay to be on some medication.  I told him the reason I was asking was that I wanted to apply for life insurance and it was one of the questions on the form.  He told me that with my recent lab results and the fact that I was on prednisone, I should probably wait because I'd likely get rejected again.  Le sigh...

- a little lupie -

Uh Oh

I have the laboratory send me a copy of my test results, so I usually see them before I go to see Rheumy.  I got the results today and they don't look too good.  RBC, WBC, Hemoglobin, and Hematocrit are all low.  C3 complement is low, which according to Google means that I am more prone to bacterial infections...a low C3 is often seen in people with auto-immune disease.  My sedimentation rate is high (34), which indicates inflammation.  And the one that got me...my double stranded anti-DNA is off the charts (>300) which indicates more lupus activity.  I don't think it has been this high for a while.

Despite the lab results, I have been feeling okay.  I've managed to start exercising a few times a week, and I feel like it is helping me.  I see Rheumy tomorrow morning, so we'll see what he says.  Last time I went, he indicated that they usually will not change my medications if I am not experiencing symptoms, despite what the lab work says.

- a little lupie -

My View Series #10

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

I was unstoppable until this disease knocked me on my behind. Words couldn't express the terror I felt. I was scared. With encouragement, support and research, it comforts me to know I am not alone. I am still unstoppable. With every bad situation, good will come out of it.— Carolyn Kingsley

- a little lupie -