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Monday, 25 February 2013

Playing sport after 6 months of red skin syndrome reocovery

Two months ago I would not have thought this possible.  I was stricken with tight dry skin, barely able to move unless I lathered myself in moisturiser after scraping off many deep layers of dry skin from my entire body.  Now after 6 short months the skin is white again, soft and moist and I'm back doing the stuff I love.

It's important to note that I'm not completely healed yet, there will be many more months for the body to get back to 100%, but I'm better than I was before I stopped cortisone steroids (creams and pills).  My skin is starting to get soft and durable again, my body has lots of energy and I can move with absolute ease.

There are still some places that are dry and itchy, they come and go across the body healing one by one.  Interestingly, once healed they go away permanently, so I don't mind when the come up on me.

Below is a game of frisbee I played today, this video documents my colour throughout the hour of exercise.  Usually I would be bright red in no time, but pleasingly I kept my colour quite white, wasn't too itchy or sore and even now 4 hours afterwards I'm feeling and looking good.

Special thanks to my friends at the Real Mufcoy for encouraging me to play: Wallsy, Charlie, Toff, Lisa, Dan, Loz, Bessy, Diana & the others that were there, Ronnie, Joshie & more.

Sunday, 24 February 2013

Cortisone recovery update - Monday 25/Feb/13

The recovery continues in a positive fashion, it's on the up and up as they would say and I couldn't be happier.  Over the last month I've been out on the town meeting lots of cool people and getting lots of compliments on my look.  I've also been out with a few young women, none of which have said a thing about my skin or colour which is an amazing improvement even on pre-withdrawl Josh.

I've received a heap of e-mails over the weekend asking a few questions and looking to compare themselves to me, so here's the answer to a few of the most common q's.

I used cortisone for 10 years, although the first 5 -6 I used bugger all, just on spots that came up from time to time.  After that I used quite a lot, until recently where I would regularly use 2 - 3 tubes in one sitting.  The tubes were 0.1% strength, and the tablets became more frequent as well.

Early on in the recovery my legs swelled up like tree trunks and for a month I couldn't get into my shoes.  Solving this was my Dad, who kindly started massaging my legs daily, pushing the fluid out of them.  After about a week of this we saw big improvements and over the next month it completely went away.

Sleep was another big issue, even when my skin was healed I was waking up every hour.  So to solve this I went out partying, forcing myself to stay away until I was completely shagged (tired) and doing this regularly trained me to sleep through the night instead of the day.

Diet-wise, I eat really healthy, lots of fruit, vege, fish and lean meat.  I largely cut out gluten, carbs & sugar, and for the first 5 months booze and caffeine.  Nowadays I drink about 3 - 4 beers when I go out, and two coffee's per day.  Other than that, I don't drink softdrink anymore, focusing on keeping my fluids up, and suplimenting my body with prime rose oil, cod liver oil and zinc tablets.

If you do nothing else, I recommend cod liver tablets.  The research on these is very positive and my recovery certain sped up after taking them (3 tablets daily).

Any questions, just let me know.

Tuesday, 19 February 2013

Don't use cortisone cream - Recovery month 5.5

Five and a half months into the recovery and things are going from good to better every day. I haven't had any flare ups, or bad days, just a steady improvement. There are a few patches that go through stages of redness and itchiness, this lasts about 1 month but doesn't affect me physically at all.

In the last 2 months I have been partying, drinking, and generally having a great time and the body has been lapping it up. I'm really happy with the progress U;m making and it looks like the recovery only has another 6 or so months before I'm back to normal.

Pleasingly it has been a very long time since anyone asked if I was sunburnt, or mentioned how red I was. I use to get rejected from bars a lot after security thought I was drunk from my redness, now that never happens.

Another really interesting thing I noticed was my balls (sorry if that makes anyone uncomfortable). For the last 4 or 5 years they have been bright red, itchy and occasionally had small white zit like pustules on them (sounds worse than it was). I never put cortisone on them, but they still reacted this way. Since quitting cortisone my nuts were the first thing to heal, now a dark brown skin colour, no marks, not itchy and 100% back to normal.

So on that bombshell (sorry), I'm signing off. Thanks for the support, particularly to you John Boy for your regular e-mailing.

See you all soon.

Sunday, 10 February 2013

Recovery Tip - Massage

The general consensus amongst the topical cortisone steroid recoverers is that the body needs lots of rest and relaxation in order to heal quickly.  One thing I have notices now that the skin is not flaking like crazy is the role of massage in helping the colour and texture of my skin repair itself.  Over the last month I have been going for massage several times per week, and following each session my skin is whiter and smoother than before.

Today I started the day quite red, as you can see in the image below.  This has been brought on by long hours in the office and broken sleep due to the heat of summer.  After  the mid afternoon massage (1 hour session) the look and feel of the skin improved.

Where this really fits in, is my belief that you need to stay active and interact with life.  I know it's tempting to hide away until it's all over, but in my experience recovery has been quickest, and most bearable when I'm busy living life and having fun.  So lets examine this:

1. All medical evidence shows that an active brain is a happy brain, this is because we release endorphins (which my friend Amy calls 'inner dolphins'), which make us happy, help the internal system work and speeds up recovery.

2. Time passes quick when you are having fun

3. The most important recovery isn't physical at all, it's internal.  Talking about motivational theory Maslow has a theory that the highest plain of existance is when you reach self actualisation, or in laymen terms, when you are confident in yourself and unphased by others.  Let me tell you now, if you're not focusing on your own state of mind, start now.  Read a book, talk to me, just start working out how to be more happy with yourself and everything else will feel easy.  It's my #1 pro tip for life.

Ok, enough pontificating from me, any more and I'll be running for Pontiff... which I'm not sure my two years of high school Latin qualifies me for, and failing that, my lack of religious believe certainly disqualifies me.

Keep the messages coming!

Tuesday, 5 February 2013

Celebrating 5 months of cortisone steroid recovery

Welcome all, thanks for the ongoing support. Today marks a milestone of 5 months recovering from cortisone steroids that ravaged by body, destroyed my adrenal system and sent my skin bright red and dry.

Since stopping use of cortisone steroids, my body has been the victim of a horrendous recovery; bright red skin, very very very dry cracked skin, hair loss, swelling, insomnia and much much more.  Pleasingly, after 5 months of recovery things are improving, and I'm back living a fairly normal life.  I still can't exercise or work out, need to manage the amount of heat my body is taking in and have quite a strict diet and relaxation program, but I'm on my feet, having drinks with mates and back into my beloved party scene.

In recent times I've travelled interstate on planes, drunk booze with friends and worked late nights with minimal sleep and the body has held up very well, in some circunmstances better than it use to.  My internal system is working the best it has in years and areas on my body that use to suffer from cirrhosis have cleared up and gone away.

Still I live with redness and areas of dryness, hair is still months away from coming back properly and I need to mange myself, but on the whole it's a very positive story.  How much longer?  Well I don't know, it could be months, it could be years.  If I had to guess I would say another 6 months before I'm back to normal, but to be honest that is nothing more that an optimistic guess, something I'm working towards and very prepared to be wrong about.

I'm throwing a party to celebrate my 6 month recovery next month, should be a belter of a night!