I’ve been away for a lot of time. I was kept busy by work (yes, despite what I’ve been reading that many have been down) and a pregnant family which now adds to four! I’m a happy father of two!
It’s a hot Summer in Malta and those who know what Reynaud’s is, will understand that a hot Summer means painless joints. Sometimes even the smaller joints, pains of which are there despite medication, seem to fade away. There’s an occasional breakthrough, in the form of a constant bugging right shoulder, which is a nuisance and keeps me going very slow at times. On the other hand, the high temperatures make it a lot harder to cope with the lethargy that is a more frequent visitor. Well, never enough of #fuckyoulupus said.
I’ve put downa couple of thoughts about life, the relationship, war with the Wolf…..
Submissive without reservation
Fight futile it might
Resign to a sorry plight?
Accept or spiral into slow mental decay
My condition is that I won’t as yet lay
A romantic shadow of former glory
Never restored, now turned gory.
My wolf, don’t celebrate!
For the fight plan is elaborate
Know that I’m not vanquished
This war waged is not yet relinquished.
You just have to learn to live with the Wolf in the background. Learn to love yourself and allow yourself to do something you like, something which relaxes you, maybe, something new. I did and so can you.
Check this out.
It’s been a while and someone emailed me to check if I was dead! Tee hee hee, No, not dead but thanks for the thought.
The thing is that I’ve been a bit busy. Ok, I’ve had a cold which is now a thing of the past and this damned shoulder pain has been bugging me for 2-3 weeks but on the whole SLE is not bitchin about too much. Haven’t been shootin’ much because of it and my trigger finger is itchy! I have enrolled in a photography course and gone through nearly 3000 clicks on a new DSLR…..a Nikon D7200. I have to make up for the lack of gun shooting although the energy levels don’t allow me to go out and practice as much as I would like to. Lethargy and Sir Reynaud are ever present, on most days. The cold doesn’t help and my wolf’s partner, Sir Reynaud, makes sure I don’t forget about him!
Just today I was curious so I used the digital thermometer to check the temperature of my cyanosed fingers. It read 32 degrees……then I heard it say, please check for signs of life!!
Anyways, I’m off to bed now. Photo attached below is one of my HDRs which can be found on my Facebook page KJHolmes Photography as well. Oh, by the way, let me know what you think of the watermark I have created.
Until the next one, I hope you all keep well.
This was the last time I was admitted, back in 2013. Pericarditis, a flare up of SLE. I have put downa couple of thoughts back then which I have recently discovered and decided to publish.
I was discharged on the 31st December with a diagnosis, Systemic Lupus! Looking back I have recalled a number of other flare ups which have occurred along the years, some of which, 15 years before. I realised how diverse the signs and symptoms of this disease are and understood why, like many, I have only been diagnosed now.
I wish all of your followers a very fruitful 2016. To you, fellow Lupies, I wish strength and will to fight the wolf. There’s only one rule, and that’s NEVER to give up.
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!!
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.