Rheumy Update

I had a Rheumy visit today.  He noticed my hair looked like it was thinning.  I showed him my bald spot, which I've also posted here for your viewing pleasure (along with my white hair...double boo!).  He confirmed that he thinks the hair loss is caused by the lupus and not the prednisone.  He said that bumping up the prednisone dosage may help to slow down the hair loss, but before we try that, he said to start taking a pre-natal vitamin and biotin supplements.

I told Rheumy about the random joint pain I've been experiencing -- one day in my knee, next day in my wrist, next day in my little toe.  He said that is pretty normal.  The term they use for it is "migratory".  I thought that was a good descriptor.

My blood test results did show lupus activity and my urine results showed small amounts of protein and blood.  We'll try testing one more time, and if it is still present, I'll need to take a more exact test so we can get a protein count because it could be a sign that the kidneys are being affected.  I asked him if I'd have to do the test where I pee in a big jug, but he said no.  That is the most accurate way to get a protein count, but there is another test that gets very close and is not as inconvenient.  We'll also check my ds-DNA one more time, but if it comes back ">300" again (which it showed in the past 2 tests), then it probably isn't worth it to keep testing it for now.

For now, I will stay on my 2 mg dose of prednisone.  If there is still lupus activity, Rheumy said it would be better to increase the dosage if it will keep the lupus in remission.  He said that if it were between going up and down on a 2 mg dose or staying stable on a 5 mg dose, the 5 mg dose is by far the better choice.  5 mg is still considered a low dose, and the danger of going up and down is that there is a higher likelihood that it could spike suddenly.  We'll monitor again in about 6 weeks.

- a little lupie -

Lazy?

Some days I sit around doing nothing because it hurts to move.  Last night my left knee hurt any time I tried to stand or walk.  My left elbow hurt any time I moved my arm.  It really is debilitating.  You can't see pain, and I'm not one to complain loudly, so I probably just look like a lazy couch potato.

- a little lupie -

The Spoon Theory Revisited

No, I'm not talking about missing silverware.  If you haven't heard of The Spoon Theory, you can read about it in one of my old posts.  Living with lupus is an exercise in "spoon management."  In a lupie life, spoons are your currency -- each task, big or small, will cost you some spoons.  When you wake up in the morning, you are given a certain number of spoons.  It will vary day to day, but you'll learn to manage your day by how many spoons you have.  You'll learn to prioritize to make the best use of the spoons you have been given.

As the meme suggests, there are some days when just getting out of bed and taking a shower uses up most of your spoons for the day.  I've been there.  It is frustrating and depressing when these simple activities feel like too much.

In the previous meme I posted, it talks about going to the zoo for three hours and spending the next three days in bed.  Spoon theory would say that going to the zoo caused you to go negative in your spoon balance, so you spend the next few days replenishing your supply.  Sometimes, it is worth it to do this.  It's simply an exercise of knowing your priorities, planning ahead, and managing your spoons.


- a little lupie -

Consequences

Truth.  For me, lupus is not disabling in the sense that I am physically unable to do things.  I can spend a day at the beach and have fun, but I do so knowing that it may keep me in bed for the next few days and hope that it doesn't trigger anything worse.  Sometimes it is just about knowing my limits and not pushing too hard.  Instead of spending a day at the beach, I could spend an hour there under an umbrella and take it easy for the rest of the day.  Sometimes I say screw the consequences...it's worth it.

- a little lupie -

Chronic Illness Cat

I came across a meme on the Internet called Chronic Illness Cat. There were quite a few that I could relate with, so I thought I would use some of these as inspiration for future blog posts.  It is fun looking at these memes because it helps me realize that I am not alone and there are others who are going through the same thing.  Some of the memes I came across are funny, some are vents, and some are just sad.


- a little lupie -

Hair Loss...Again...

Back when I first got dianosed with lupus, I was experiencing a lot of hair loss.  Luckily, it slowed down, and I got my full head of hair back.  Recently, however, it seems that the hair loss has started again.  I constantly have loose hairs falling onto my clothes, end up with hand fulls of hair when washing my hair, and a brushfull of hair from brushing.  There are hairballs (or Cousin Its, as hubby calls them) all over the house.  When I went to get my hair cut the other week, the stylist noted that I have a bald spot starting.  Wah!!!  :`(

Hair loss is both a symptom of lupus and a side effect of taking prednisone.  I have a feeling mine is more related to the lupus being active since the hair loss doesn't correlate with my prednisone dosage.  In any case, I hope it stops soon...

- a little lupie -