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
New TSW Website by Briana Banos
2 years ago
Loved seeing jake nd lib!!! Goooooooo red skinners! Loren, kline's mom
ReplyDeleteHad to laugh at your chippendales impression! Great to see Jake and Lib. I have been in touch with a few TSW sufferers near the Melbourne/Geelong area. It would be great if you could all form a support group. If you email me, I can pass on their email addresses. My email is joneslouise90@googlemail.com.
ReplyDeleteWhere did jake get the one month for every year used theory? Ot sure that is true...Kline should have been healed at 3 months then and he is going on 10 months and still suffering a lot. Ugh!!! I had heard 30% of the time u used to heal...so that outs Kline at a year.
ReplyDeleteWell, that one month for every year used theory goes out the window for Keira because she only used for 1 year and it took her 10 months to be 100% healed :) But everyone is different, so one can only hope right :) Great blog and post! Thank you for sharing!!! big hug to all of you!
DeleteThanks Kristina,
DeleteI agree with you 100%, there is no hard rules.
I accept your hug and raise you a high five.
Lots of love.
Josh xx
I'm not sure, but it is something I have heard many times before for adult recovery. I can't atest to the validity of that claim, but personally that's what I have been working towards. I used cortisone for about 10 years and I'm working on a 10 - 12 month recovery (whilst completely prepared for it to be longer if it needs to be).
ReplyDeleteInterestingly Jake was on cortisone for 16 years and is almost recovered after 13 months... not really statistically relevant data sample, but I'm just hoping for my own sake. I don't for any means intend to insult or upset anyone, it's not my theory, nor can I back up the validity of the claim.
Wishing you all the best over Christmas.
Josh
Hi Josh.
ReplyDeleteJust thought i would post you to say that ive been keeping up with your progress over the last 3 moinths .My name is Ty and im at the very same timespane 9stage ) as your good self.i havent created a blog like yours up til now but im thinking of stating one in the near futeure . ive been keeping a personal diary so i can look back on this time . Anyway , just thought i would say that its been good to listen to your posative outlook on what is, to put bluntly , a nightmare of an illness . im 45 years ols and have been using BETNOVATE for probably 17 years . im now totaly off all steroid cremes and going threw withdrawal .the last few months have been quite bad . main problems with my withdrawel have been face , neck ,chest and upper torso .plits and rawness have been a major issue on my neck especially .another problem for me is that i am a self employed window cleaner and have had to work in freezing weather which hasent helped the condition .the english weather is quite nasty at the best of times but especially cold at the moment . a point i have been trying to get to grips with is finding out sufferers usage of steroid creams on a personal basis . how often creams were applied ? daily ? twice daily .did you stop using steroid cream when the symptoms subsided ? you say you have 10 years on steroid history . did you use every day of those 10 years or just when needed ? ..i actualy rebounded on the steroids and have been flairing for probably a year already before i found out about RSS . i thought it was the excema and would stop using steroid when it cleared . problem was that when i didnt use the cream for a few weeks the withdrawel would start and i would use steroid again . the wicked circle would start again . ..ant feedback would be great . thanks again ...kind regards TY (FROM ENGLAND )
Hi Ty,
ReplyDeleteThanks so much for getting in touch, I really appreciate your comments. I can associate with what you are saying re: getting out in the weather, here in Melbourne we have extreme changed in weather quite regularly. I was once on the golf course when the weather went from 30 degrees Celsius to hailing within 15 minutes. These temp and humidity changes mess with me a heap. In fact I never had any skin problems when i lived in New Zealand, but Melbourne really messes we you!
As for usage, I started 10 years ago barely using any cortisone cream, maybe a couple times every few months. A few big flare ups occured and I used a lot for a concentrated period of time, and then went back to using none when it died down.
Throughout uni, I used cortisone very sparingly. So that's the first 4 years of my usage and after that it ramped up more and more. Over the last 5 years I have probably used it once a week on average, only on areas that flared up, or spots of dry red skin that appeared. It seemed to work immediately, so I always used it as a fix-all solution.
By the end, I would play sport, then we red as hell and sit in the house all Saturday night/Sunday covered in the stuff. I would use 2 - 3 tubes to be ready for Monday.
It's really hard to know how much of the stuff affected my body, when I started having adverse effects or the total amount I actually absorbed into my skin, but overall I would call myself I mild user.
thats interesting to know Josh and thanks for the quick reply .
ReplyDeletelike you , i would call myself a mild user but over a longer space of time and with stronger steroid cremes. another thing that i did was to mix the steroid in with my emolient creme to get a wider spread over the area of bad skin . i dont know if this will go in my favour as to a recovery timespan or not .
i do feel that i did actualy abide with the guidelines until i started rebounding from the cream . i never used it on my face but then started when it affected my eyes . i had serious swelling of the eye lids and arounfd the bottom of my eyes . to the point were it seemed to affect my sinus area as well .i used the cream and it subsided but then came back days after not using the creams . this has gone on from the summer of 2010 .
i stopped using steroids in september and after 2 weeks my face swelled and i shed the skin .since then i have had the redness , the itch , the burn and hives on my top half of my body , but i havent shed again since .
its a hard road my friend but i know we will get to a better place healthwise if we keep posative and stay off the creams .
i am buiding up a case study at the moment to take and discuss with my doctors . i have started compiling my own medical history and have asked for a dtailed factsheet on all my steroid history . i am planning to put it all together and add other peoples experiences . i am even going to offer myself up to my doctors so cthey can use me as a study on the full cesation of steroids .i hope to build a good case for myself and open their eyes to the fact that full cesation of the use of steroids can be a way of curing others .
kind regars .TY .
Hi, it was great to watch you vlog and hear your stories and tips. I live in melbourne and am half way through month 7 of tsw. I'm much improved but still have a few more months in front of me until I am fully recovered. I would love to meet up with yourself, Jake and Liz at some stage if you guys get together again in the new year. I've gone through this with just the emotional support of my partner but it would be awesome to meet some fellow rss especiall some as positive as you guys. I've been in touch with Liz previously and she was a great help and support so if you are ok with me joining you all for a cuppa sometime, I would love to. My email is raycharles72@hotmail.com. Cheers rachael
ReplyDeleteHey josh, I'm 29 and preparing to go through the withdrawal in the new year. I also live in Melbourne. Congrats on what you're doing, it's incredibly inspiring. Do you have a doctor in Melbs who understands and is supporting you through this? I use the creams every day and I'm petrified of what lies ahead. Onwards and upwards. Gem
ReplyDeleteHi Gem,
ReplyDeleteI don't have a doctor in Melbourne, I tried heaps of different ones and they were all hopeless (doctors & dermatologists). In the end I found one that would give me pain and sleeping meds as requested and have been just waiting it out as such.
As best I understand, there's not much doctors can do except reassure you that everything is fine. The symptoms are truely horrendous, but it's just a matter of waiting them out.
The first few months are terrible, but just stick to your guns, sleep a lot, have someone to look after you and don't expect to have a social life for some time.
You will get through this and you will be a million times better off for it. I'm 4 months in and whilst still red and looking a bit ugly, I feel a million times better already.
Josh
Ok, thanks Josh. :) Good work on your progress.... and thanks for the reassurance.
DeleteHappy New Year!
Gem