Lupus Support Group – Malta

As a follow up to my previous post of June 23rd, I have news to share!

The meeting of the Lupies was a great success.  There was 10 of us there, 8 of which suffer from SLE.  We shared our experiences and also discussed the possibility or reviving a support group which was active some time ago.  Since then we have started two groups on Facebook.  One is an open group which anyone can join.  The aim of this is to reach out to other Lupies, spread the word, increase awareness, and the like.  The other is a closed group for local Lupies only.  People can join this through an invite but must be affected by Lupus.  A private message to the admin of the open group will start the ball rolling for those who want to join the secret group!

I am now off to translate some stuff into Maltese which will go in the open group.

Oh, nearly forgot.  It’s Summer here, so please, especially if you’re a Lupie, AVOID THE SUN!!

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We’re meeting!

It has been contemplated for some time but now it will happen!

People who suffer from Systemic Lupus Erythmatosus (Lupus for short) who live in Malta or it’s sister island Gozo, are meeting to get to know each other, share information and support each other.

Date and time:  Monday, July 6th at 5:30pm
Venue:  Tramici Coffee shop, 91/93, Naxxar Road, Birkirkara, Malta (next to Big Bon, Behind the St. Theresa Church)

If you’re one of us, we really really hope to se you there.

The great imitator is also a teacher.

I swear I’m not trying to hornswoggle you!!  Read on and you’ll see.

Despite not being on duty (call it the bliss of shift work in the halcyon days of the chilly season), today I have spent the day in my hibernaculum.  Lately I’ve resorted to this a couple of other times especially when I’m in a hiemal mood or like today, woke up tired.  For those raising an eyebrow, yes, waking up tired after a good night’s rest is possible with SLE.  So I decided to stay home, light a fire, take it easy, eat healthy and slowly, read, keep warm, and enjoy my family.  A siesta was in order….but only thoughts came.

I usually treat thoughts when I’m in bed to the ‘Slave New World‘ therapy which goes like this:

I face them as The enemy
I stare Inside me
I control them
Then I destroy ’em all

But not today.  Today’s thought drifted in the way of the teacher, Lupus the teacher.  Systemic Lupus is often referred to as the ‘great imitator’ for it mimics a lot of other diseases and conditions.  It’s because of this that diagnosis if often delayed.  But nobody reads about Lupus as the great teacher.

Over the years, through the smog SLE has created around me, I have managed to thrive, not on my own, but managed, just like The Beatles say.  Some symptoms have been there all along whilst others have made their grand entry during the last 4-5 years.  The late comers ware the most mischievous – Mr. Reynaud; Bitchy little Miss Brain Fog; Lady Lethargy, and the Devil’s children, those aching joints!

Unlike other Lupies, my bouts of lethargy are not a constant in my life.  So I do almost everything I can/want to do on most days.  I have learnt to go around it.  If I’m at work I try (the magic word is try) to take shorter but more frequent sitting breaks.  During days like today I learnt to take it easy and, most importantly, not to feel guilty for doing so.

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Reynaud’s attacks are often anticipated and at times countermeasured in time.  I know that when I put my cold gloves on, they shock my circulation.  When I go out in the cold, that makes it worse, so I either take them to bed with me and put them on before I get out of bed or warm them well with an instant heat pack before I go out.  See, I’m a good student!

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The pains in the small joints from my wrists down to the fingers are a constant, present for most days of the year for the past 3-4 years or so.  I learnt to ignore them and go on with my life.  I learnt to ignore when the teacher thew the challenge at me.  This is how Lupus is a teacher.  I throws the challenge at the student and it is then up to the student to pick it up and learn how to go about it…..or just wither away in silence, alone.
Oh, nearly forgot about Brain fog…………….It’s a loathsome bitch and will be forever!

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Mouth care in SLE

There are various problems encountered by Lupies.  Some of which are:

  • Oral sores – usually painless
  • Corticosteroids may be used to control SLE flares.  Their side effects include dryness of the mouth, swelling of the gums, oral sores, yeast infections and bone loss (which eventually affects the movement of the jaw).

What to do?

  • Get a note from the rheumatologist addressed to your dentist explaining your problems. Even better, get them to meet or call eachother.
  • Do tell your dentist that you have SLE and about any oral sores you had in the past or have now.
  • Every time you visit your dentist, take a list of all medications and any supplements you are taking including any allergies, drugs which made you sick in the past, or others which your Rheumatologist has cautioned you against. These can affect the way cleanings are made or drugs which need to be prescribed.
  • Keep your mouth healthy, visit the dentist regularly – every 3-6 months.
  • As we said, some meds can dry up your mouth. This dryness may be uncomfortable, it increases the risk of cavities, causes damage to the gums and then, if present, dentures fall off.  Thus you need to keep your mouth wet.  Here’s how…
  1. Drink 1.5lt-2lts daily unless contraindicated by other conditions
  2. Spray water topped with a little amount of mouth wash solution into your mouth frequently.
  3. Avoid salts, tobacco, alcohol, and caffeine.
  4. Wash your teeth properly once or twice a day

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