Sunday, 18 February 2018

Lupies Will Understand

I'm sure lupies will understand these things, healthy people might not.


  • Having to do something important, that involves speaking, when you have a massive ulcer on the tip of your tongue.
  • Going on a short trip, and having to take an extra bag for your medication.
  • When you have a choice between going out and having fun, and having a nap, choosing the nap.
  • Writing absolutely everything down, because otherwise you will forget 90% of it.
  • Checking your pill case five times in an hour because you keep forgetting if you took your pills.
  • Drinking coffee by the litre because otherwise you'll fall asleep, then not being able to sleep when you need to.
  • Postponing dealing with a crisis because you have a doctor's appointment.
  • Getting exhausted doing nothing
  • Not knowing if something new is a symptom or a side-effect.
  • Doing things you know you shouldn't because you're just so sick and tired of being sick and tired.

Tuesday, 13 February 2018

And this little lupie went wee, wee, wee

Let's talk about an embarrassing little issue that some lupies have.  Actually, I was afraid I might be the only one, but I've since found out there are others.

I've always had a little bit of stress incontinence, (advertisers now call it "light bladder leakage") ever since I had my kids, who are now both in their 20s.

Lately, it's been getting worse. More than that, I've been horrified to discover I've wet the bed a couple of times.

So, off to the GP.

Her first question: how much water do I drink?  Well, because I have a horrible problem with dry mouth, a lot.

Next question: do I still do pelvic floor exercises?  Yes, I do.

The options she gave me: a pill for the night time, but it would leave a dry mouth.  I balked at that because I have enough trouble with dry mouth as it is.

The next option was some surgery to correct the leaking when I sneeze or cough.  I've had more than my fair share of surgery, so I wasn't really enthusiastic about that either.

I opted to think about it and get back to her.

Back home, I started to think about her first question again.  Just how ridiculous an amount of water do I drink each day?  I decided to try setting a limit - not so little water I'd be in any danger of dehydration, but less than I've been guzzling.

I have been tracking how much water I drink - limiting it to about ten to twelve cups per day.  So far so good - no wet bed, and not even any little leaks with coughs or sneezes.

Of course, that leaves me struggling with my dry mouth. I'm sipping my allowance of water really slowly, and making a lot of use of moisturising mouthwash, mouth spray and gel. (The brand my local pharmacy has is Biotene, but there's probably other brands of the same thing out there.)

It's quite typical of living with lupus that anything I do to deal with one problem makes another worse. Hopefully, I've found a balance with this particular issue. 

Do other lovely lupies have this problem?  What have you found to help?

Sunday, 21 January 2018

A Bloody Mess

A lot of lupies, including me, take fish oil as part of our drug cocktail.  I don't take quite as much as my rheumatologist wants, because if I throw up if I take the eight to ten capsules a day he recommends.

But I do take six 1000mg capsules each day.

Fish oil is a blood thinner.

Usually, I don't even think about it.  After all, there are so many side effects of the things I take, I wouldn't be able to think of anything else, if I kept thinking about all the things my drugs could do to me.

This morning, I cut my thumb on a broken glass in the kitchen sink.

I dripped blood as I walked across the kitchen to the drawer with the first-aid kit, and found a sticky dressing to apply. The pad of the dressing soaked up immediately, but didn't leak through the other side, so I was able to do a fair clean up and look a little less like Jack the Ripper.

I have a problem with sticky dressings.  Even though I used the ones for sensitive skin, if they're left on too long, they tend to take chunks of skin with them when they're removed.

So a couple of hours later, when I was in the bathroom washing my hands, I decided I wasn't risking having the, now wet, dressing on any longer, and I took it off.  The tiny cut was still bleeding.

With my non-cut hand cupped under the cut one to catch the blood, I dashed (OK, limped as quickly as I could) back up the hall, tripping on two strategically-placed cats on the way to the first-aid drawer again.

So the moral of the story lovely lupies is this, when a medical-type person with a needle or scalpel or other sharp implement asks you if you're on blood thinners - remember that includes fish oil. (Oh, and take a look at what's in the sink before you put your hands in there.)