Oh my Blog!

I haven’t posted in some time now.  I was coping with family life, study and being really busy at work in a place which is insensitive to the needs of a person with Lupus (nothing new really).  This has been draining my energy levels, which, sincerily speaking, are quite ok compared to those of others I know. I have also been doing some shooting for a couple of times when I was ok.

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Today is my 5th wedding anniversary.  I love my family (wife and son) and thank God for them every single day.  My wife has been so supporting through the downs which SLE put me through during the last 4 years (Deep Vein Thrombosis, Pleurisy, and Pericarditis, and the daily pains and groans at night) until I was diagnosed last December.  My son helps me forget (yes, forget!) the pain which the meds often do not take away.  I hate Lupus with all my fucking heart, I miss me and long for the old me to be back every single day BUT I love them to bits and they make pulling through so worthwhile, I love life.  They give me purpose in life and that is something I wish onto all fellow sufferers, purpose.  Whatever it is, purpose is strength to fight the Wolf every single day.

 

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So, I log in today to post something for the few followers that this blog has gathered along the few months it has been on and what do I find?  OH my dear God…..over 5200 views!  That’s nearly 4K more than what I had left off 2 months ago!!!  Woooohoooooo.

I just want you ALL to know that you made my day and that

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So, October (and May!) is Lupus Awareness month and so I decided to put on some of this stuff here:

If you don’t know Lupus, then you could read through this.  It’ll take less than 5 and give you quite some insight into the disease.  If you don’t feel like reading, just watch the Youtube clip below.  No excuse now, HA!

And please, for the sake of those who fight the wolf every day, try to raise awareness.  Here’s how to in simple, inexpensive ways.

 

 

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Trust me on the Sunscreen!

I’ve been missing from the blog for some time now.  I just realised that I haven’t posted anything new in ages and I tell you, the site stats are flatter than flat!  Please excuse me.  I had a lot to keeep up with and as most of those with Lupus know, our energy levels are limited and I do have to prioritize to keep up with other things.  So, it’s Summer!  Meaning: minimal Reynaud’s symptoms (YAY!)…a bit of swelling of the fingers (GRRR!)…BUT more bouts of fatigue (NOOOOOO!)!  And, oh, the Sun!

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Those who do not have Lupus should take heed as well!  According to the Skin Cancer Foundation, skin cancer in more common on the left hand side (face, neck and left arm) of American drivers.  It also happens to be more common on the right hand side of Australian drivers.  These drive on opposite sides of the road so the drivers are exposed to the sun differently.

In Lupies, the risk of cancer is there but we also are at risk of disease flare ups when exposed to the sun.  These are not limited to skin eruptions but also generalised flare ups involving organs and they most often present 2-3 weeks after exposure.  That means that we have to take care not to expose ourselves unnecessarily.  How?

 

If possible, avoid exposure to the sun especially between 10am and 4pm (in Summer).

 

vampire_in_the_sun_poster-p228819741122881731t5wm_400Remember that a cloudy day is not a UV free day.  Most rays still pass through the clouds.

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If you’re in a car, keep the windows up.  The glass blocks away the harmful UVB rays (short wave).  Unfortunately the UVA waves are not blocked, so an alternative like clothing or a  window screen might be needed.  There are clear versions of this, so it does not have to be tinted and the one approved by the Skin Cancer Foundation is provided by LLumar.  They even produce a larger version for window panes in buildings.  I am currently awaiting a reply to see if it is possible to have this shipped to Malta.

 

Sunscreen: Use sunscreen wisely.  It’s effectiveness is measured in SPF (Sun Protection Factor).  A high factor sunscreen is important.  Apply it generously and make sure to apply it every so often.  How often?  Many say that a sunscreen has to be reapplied according to the SPF factor it carries, yes, but some think that the SPF is the duration in minutes you can stay in the sun in between applications.  That is:  Apply SPF50 sunblock every 50 minutes.  Not really.

According to the School of Medicine of the University of California and San Francisco, the effectiveness of sunscreen is not the same for everyone.  Once one determines the length of time it takes for one to suffer a burn (redness to the skin), then that can be multiplied by the SPF of the product to know when sunscreen has to be reapplied.  For example, I get sunburnt after 10 minutes in the sun.  So I multiply SPF 30 X 10 minutes = 300 minutes in between aplications.  I reapply sunscreen SPF 30 every 4-5 hours.  Having said this, most sunscreens only block UVB rays, which visibly damage the skin (causing the sunburn).  UVA rays are often not blocked by most screens and these are the most harmful when it comes to skin cancer and flare ups of SLE.

 

Clothing:  Wear long sleeves:  I have an issue with these as I feel very hot in Summer AND, I have to wear a short sleeve at work.  If it is not possible to wear certain clothing, first, try to bargain your position or use alternatives like this.  I try to wear long sleeves when possible and take the off when in the shade.  Second, try wearing  UV blocking clothing of UPF 40+.  I am currently trying to use my own uniforms (rather than those which are standard issue) which are made of UV blocking materials.

 

A piece of advice:  I am in the process of reading through The Lupus Encyclopedia by Dr. Donald E. Thomar Jr. who is also on Facebook.  It’s an easy read…..and a must for all those who suffer from Lupus.  Worth every penny!

 

 

Until the next one, keep safe!

Kev Sign

Very graphic post!

So I’ve been waiting for weeks to go out and shoot the gun I purchased lately.  Image

I have had to wait for the transfer of the gun ownership, then for a day off work, then that day off work had to be free of lethargy or pain and shit, and today was the day I was waiting for.

My hands, with the change of weather warming everything up, are ok at the moment.  An occasional Reynaud’s attack but nothing major.  It’s not warm enough for the fingers to swell up, not cold to make my hands look like those of the deceased.

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But, here it comes.  After sunny periods and warm days, the 2nd day of June decides to give us this

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It’s windy, coldish, with showers.  Ok, no sun, no uv rays, that’s good BUT still not ideal to be on the outside, turning blue and risking another DVT.  So a change of plan is needed.
Much needed WordPress update.
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Correcting dissertations.

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Some reading.

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….and an occasional cup o tea!

 

The Sabbatical Wolf!

This last period was charaterised by two total opposites.

I have experienced a debilitating bout of fatigue after a day’s work.

To make matters worse, my wife was in for her night shift and I was meant to care for our 19 month old hurricane Karl!

To ease them off totally, my mother came to the rescue.  She took over bathing and feeding the little boss whilst I slumped on the sofa doing a lot of nothing.  The Almighty made sure that Karl slept like a log….and guess what, me also!

 

The opposite has been also true this past week, where i managed to plan some rest periods, I particularly enjoyed work (not being overly tired and all), managed to slot in a lot of stuff and kept the Wolf on a sabbatical vacation!  These past four days have been good.  Temperatures are rising slowly and being on the outside is comfortable.  The downside, I have to avoid the Sun like I was a vampire.

Today I met a fellow SLE sufferer.  We spoke for over an hour about a lot of things, amongst which, how the Wolf affects us.  For those who know not, well, it affects everyone differently, which makes things so much more difficult, for everyone!  BUT, talking about it seems to help.

 

But I was away mostly because:

Yes, PC was in for an upgrade.
No I wasn’t admitted to hospital.
Yes, I hate to post here using the tablet.
No I’m not dead.
Yes, I’m posting an update on Scarring Alopecia.
No, I’m not totally bald, yet!

 

 

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Alopecia Areata 2

You see, I’m just like Tom here.

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So even when it comes to balding, I just don’t follow that typical pattern everyone’s so used to!  Tee hee hee.

Since 1995, so much has been said about my Alopecia Areata, just as I explained in a previous post about it.  It was attributed to stress.  I didn’t feel I was so overly stressed in my life as to have such reactions and since I never gave a bleed I just believed it was so, until 2007.  My fiancee at the time (wife for the last 4 years) decided we should be revisiting a dermatologist, the third!  She never takes anything at face value and I stood no chance of talking her out of it.  Well, a few months ago, I was happy I didn’t but you’ll have to wait for another post about that.  I’ll call it Scarring Alopecia.

We’re sitting in the dermatologist’s office and have already gone through the interrogation I nearly got used to by now.  He said he needed to take a couple of skin biopsies to see what was going on at the ridge of a couple of them patches where I was loosing hair.  Punch biopsies he said.  I just didn’t like the punch in it!

The second time I see him I’m due for the biopsy.  At the time I was a nurse in Anaesthesia so I roughly knew what would happen.  I was called in and walked into a minor surgery full of medical students, the dermatologist and a fellow nurse.  Being used to a very different routine in the operating theaters, I found it very strange that they allowed Denise in but was glad she was there.  He cleansed the areas where he’d be taking the biopsies from with the usual cold stuff, then said the magic words which few patients ever believe, “This might sting a little!”  Yeah right, it was more like the fire of an angry Dragon who just had his testicles bitten.  Did I say I was happy Denise was there?  Well, when I felt a tear trickle down my cheek I suddenly wanted her to be sitting in a waiting room elsewhere.  People who love you suffer when they see you in pain, and probably that’s why people with SLE and a hundred thousand other chronic conditions just don’t mention their daily pains.

He injects a couple of places then checks if I’m numb.  “Can you feel me here….and here?”  I know he’s stabbing me with something but I’m not in pain so he proceeds, explaining in minute detail all he is doing to the medical students.  Everything else was painless……I feel something rest on the skin of my scalp, then a pop as he hit on top of it with a hammer (?), then some pulling when he’s suturing the site of the punch, and it’s done.  Same for the other side and we’re out after less than 30 minutes.

I had to see him after weeks for the result of the histopathological report.  He flipped through 5-6 inches high of papers, had a quick look at it and explained that there was some sort of inflammation which was causing the hair loss.  It was not related to stress or any infection but it was there to stay.  He offered to prescribe a topical corticosteroid but hey, from experience I now knew it was not worth all the goo on my head.  That was it.  Denise was satisfied and I was still, Tom, balding differently and not giving a fuck about it!

Kev Sign

 

 

This does not make my Lupus better

but I sure like it and singing it out loud makes me feel good.

GO FIRELIGHT, GO!

A day off…..at looong last.

Because there are good days too!

For starters, I do not work 7 day weeks!  If I did, I’d probably be in a cold and dark place by now.  I have a day off in four and I can tell you, resting and keeping up with life is hard when working on such a shift rotation AND battling a wolf.  Most readers will undoubtedly question this or shrug it off.  I understand their lack of basic understanding of autoimmune diseases.  My bosses themselves (not all of them), who are nurses and should empathize with me as patient and colleague don’t even get this at times.  Those battling an autoimmune disorder, oh, those know otherwise.

So today was a day off, literally, where I could spend some time alone (a basic need), but also time with my beloved wife and son…….AND get some rest too.

So I managed to go and get me some ammo for the latest addition to my gun collection.

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It’s a small caliber shotgun (9mm rimfire) producing very light recoil.  It should be extremely fun to shoot….and prove useful if I ever get to teach my son, if he’s ever interested in taking the sport up (and do what his father and his aching hands cannot do most of the time).

 

Having said this, I miss out on most shooting events for two main reasons.  One being that I often have aching joints and the recoil makes it impossible for me to compete at anything and make it through a whole event (except air gunning), but even when I can handle that, my work shift makes sure that I am duty every time there is an event or I’m otherwise too tired to even try! So, after me time, today I have managed to meet up with my wife and son, gone round the island doing errands, off to grab a bite to eat (and it had to be a large one) and back home for a long nap which regenerated my energy levels.  Early night tonight for tomorrow I’m back on the day shift.  Gd nite!

Kev Sign