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Sunday, 30 December 2012

Day #116 - Cortisone withdrawal side affects update

Happy new years eve everyone.  A quick update before we all get on with our NYE merriment (and yes I mean drinking & fornicating).

I'm feeling really good, very little dry skin and/or shedding, very comfortable in clothes and scratching is at an all time low.  In fact I rarely get really itchy at all.  My face if still an ongoing battle, but it's getting much better.  As you can see from the image below, whilst my colour has improved, I'm still red skinned and this is being spread through my entire ventricular system.  That said the colour on my chest and back are very pale pink, even white.  My arm colour is more tanned brown than red and my legs are the whitest they have been in 7 years.

I'm getting back to a normal social life, able to have coffee with friends, go out and shop or sunbake in the beautiful Australian summer (for limited amounts of time).

The only restriction on my activity is making sure I don't allow the blood in my face to pump too quickly as dilation caused an intense itch/pain in my face.  This will heal over the next month or two, but right now the capillaries have not healed enough, so no sport, gym, hot foods or extended periods of heat.

Other than that, my temperature regulation is much better, I feel energised and my sleeping is starting to get closer to normal.  It's still a long way from full recovery, but all my friends and family have been commenting on how much better I look and that gives me a heap of confidence.

Happy new year all, let it bring us a fast recovery to all.

Wednesday, 26 December 2012

Cortisone side affects: Immune Deficiency: Staph

Day #111 of my recovery from the affects of 10 years of topical cortisone steroid use. Over the last 5 years of using cortisone my immune system really went down hill and I started getting staph infections. As time went on these became more and more regular to the point where they happened every month or two. I was popping antibiotics like maltesers, but it kept coming back and usually more potently than the time before. Since ceasing using topical cortisone steroids I have not had an infection and my general health has been steadily improving. For the record this streak of 111 days beats that last 5 years by a couple months... this is proof. I'll be writing another update shortly as my skin has improved dramatically over the past couple weeks. My colour is much better, flaking is almost gone and I'm feeling good (still missing my hair though). Good luck to you all

Sunday, 23 December 2012

Look good, feel better, heal faster

We all know the role placebos play in the medical process, and by the same token the role of a negative or positive attitude. One thing I have noticed is that if I think about them, my symptoms inevitably flare up. It is for this reason I've found working through the last couple months has helped me cope and in the last couple weeks, dressing nicely and going out socialising has made me feel great.... dare I say it has even helped me heal faster. Healing faster, let me clarify that point. There is nothing that will speed up the body's natural healing process, that takes as long as it takes, but stopping yourself from scratching, rubbing or focusing on any given area can give your body the respite it needs to heal over. I am still missing large chunks of hair on my head, which makes me feel extremely self conscious. Taking my parents out to dinner and movie this week, I dressed in a grey suit, crisp white shirt and fresh jeans (see below). Walking around South Yarra I felt like a million dollars, was not wondering about others gazing at me, I had back my usual confidence and swagger. Not surprisingly over the next few days my face and neck healed up and as I've continued to take time to look good, the healing has continued.
Today I caught up with a group of terrific friends from my university days. Nowadays the guys live all over the world, all flying in to spend time with one another. Will from Dubai, Kane from Canberra and many more examples. The feeling of them all taking an active interest in my recovery, hugging me and assuring me how proud they were of my attitude was amazing. As I write this I am smiling to myself and can't wait to see what the future brings. I've had a lot of people wanting to ask questions or more photo's. If you have any requests, please comment on any of my posts.

Sunday, 16 December 2012

Day #101 - Cortisone Addiction Recovery Video with Jake

In this special video Jake Killeen and girlfriend Libby join me to compare and contrast and discuss the recovery process.  Jake at the time had been recovering for 13 months, compared to my 3 months.  As you can see from the video's below, there is a huge difference in skin colour and Jake has come close to completely defeating the cortisone addiction (side affects of cortisone use).

I thank Jake & Lib for their friendship, support and terrific nature.  If there is one magic bullet for recovering from the side affects of cortisone usage, it's a positive mindset, and openness to try different things and the love and support of those around you.  There is no doubt Jake and Lib have this and I am very proud to call them my friends.

Please note, the camera makes Jake look redder than he actually is.  Were you looking at him as I was, you would never know his skin use to be red like mine.

Sitting down with Jake (13 months into recovery) and discussing our commonalities

Comparing our chests, Jake looking white, me looking very red

And one fun one - Lib & Jake, you rock my world

Tuesday, 11 December 2012

Skin splits in neck

For many years now my neck has been red and it seemed no amount of cortisone would bring the colour down.  To me, this says this was one of the worst affected areas and hence is no surprise it is giving me such grief now.  The problem at the moment is a series of splits all around my neck and throat, deep enough that they can't heal overnight and quickly crusting over whenever they dry out (which happens easily and quickly).  The dry skin of course is uncomfortable and you can't help but scratch it off, exacerbating the problem.

One thing I have noticed is that using my traditional moisturiser (QV cream) has not worked at all.  The reason for this is that QV tends to dry out, leaving a coating on top of the skin, which in turn the brain confuses for dry skin in sensitive areas.  Since moving onto an oilier moisturiser I have found more comfort around the neck, although I might add that the sensitive is driving me nuts.

It has been about 3 weeks now and whilst my face has almost recovered, the neck is still struggling.  Discipline will help sole it, but also the body itself will eventually just decide to heal, which is a recurring theme within my recovery, at some stage, doing nothing different, the skin just heals.

Overall I think my body has recovered quite well in the  first 3 months and if I was judging on overall colour, I would say the redness has gone down about 25% and the dry flaky skin about 60%.  If you think about it as a full year recovery, these are good signs.

OK, plenty more to discuss, but honestly my neck is distracting me, so another time.  Night all

Wednesday, 5 December 2012

3 months off cortisone steroids - A hard recovery

I won't lie to you, it has been one hell of a difficult 3 months with enough ups and downs to make a rollar-coaster look decidedly pedestrian.  Today however is a celebration, despite feeling like hell as i work in the office today, i am now a full 3 months in!!

The positives are that you can see the improvement in the skin, it's stronger and many of the horrible initial symptoms have started to or completely gone away, for example:

~ Hair has slowly started coming back
~ Swollen legs are almost normal now
~ Infections have stayed away
~ Ears no longer weeping
~ Skin rarely weeps, but is still dry and flaky
~ Skin flaking has reduced significantly since month #1
~ Legs barely flake at all anymore

So overall there are many positives and you only need look at louise in the UK or Rochelle as another great example of those who had gone through the pain and are now seeing the terrific results of cured white skin.

Here's to you all everywhere.  I can't wait till this most recent flare up ends, Christmas is 3 weeks away and I would love a few days of relief while I lay around in the sun!