Monday 25 November 2013

The First Ever West Midlands Itsan Meet-Up!

Sunday 24th November 2013 will go down in history as one of those pivotal events that helped change the world...

Why?

Because me, Miss Kitty Fantastico and some fellow Itsan forumites met up at the New Art Gallery in Walsall for the first ever West Midlands Itsan meet-up (unless you count the time that me and Kitty met up in Ikea for a cuppa!)!

It started off when a member of the forum contacted me about meeting up, as she didn't live far from me. We arranged to meet, and I put out a general shoutout on the forum to see whether anyone else would like to join us, the more the merrier.

So it was that on a cold November morning, we got together for a coffee and a chat about all things TSW related.

There were six of us altogether: me and Kitty, a mum supporting her teenage daughter in her 4th month of TSW and a daughter supporting her mum, who is now 8 months into withdrawals.

I love meetups like this, because this is the only time that you will meet someone who understands EXACTLY what you are going through. We can happily chat away about things that would baffle most people, such as the infamous "red sleeve", symptoms like ooze and chills as well as the psychological trauma of TSW. It was great to meet with carers/supporters too. Support is so vital for us at this time and we truly appreciate our family members and partners who stick with us and give us the physical and emotional help we need to get through this.

I met a young teenage girl who is a complete inspiration. She is only 4 months off the steroids, some of which were very strong, so she is in probably the peak of withdrawals. Despite this, she is wonderfully positive and never moaned or complained about her TSW. A lot of adults, myself included (I was a complete cry baby in the early stages!), would be humbled by her quiet dignity and excellent attitude. She wants to be a make-up artist when she is older and I believe she will succeed in her goals, including the more short-term plan to beat TSW and heal. She is truly beautiful on the inside and outside.

One of the big subjects that came up in conversation was how frustrated many of us are when our doctors are dismissive of TSW. Some doctors are refusing to look at the information and articles about steroid withdrawal, dismissing it as Internet scaremongering. Here in the UK we are desperate for medical support and recognition. If anyone in the UK knows of any doctors who are sympathetic to TSW, please contact me via the comments section on the blog and I can forward the information on. We really need doctors and dermatologists who are willing to treat patients without steroids or immune suppressants like protopic.

The time went really fast and when I looked at the clock, I noticed we had been chatting non-stop for 3 hours! We all agreed that we would love to meet up again, maybe in a more central location like London, which is accessible to even more forum members.

Anyway, we took a few photos...
Here we are...merry group of TSW'ers with a positive attitude. We drank lots of coffee that morning!
Kitty brought her copy of Scratchy Monster for me to sign.

Thank you everyone for coming and making our meeting a success.

Nobody has to go through TSW alone. Get on the forums, find out who lives near you and get together!

As of today, Itsan has almost 700 members worldwide and the most users online at the same time is a whopping 201! The forum is burgeoning and growing at an exponetial rate, making it easy to locate someone who is local to you.

So go out and do it!

And then blog about it!

5 comments:

Anonymous said...

Red thumbs up! Yay!

Tracy S said...

How absolutely EXCITING!!!! You all look so great!!!

Ruby said...

awesome! you all look nice and chipper :)

Unknown said...

Hi Louise. Glad to see you all had a nice meet up with local red skinners.
Superb!
Thank you for getting in touch and asking how I am. A quick run down for you,
I started my withdrawal on 1st July as planned and went through a rough patch as you can well imagine. Have been flaring pretty much non stop since then with a few days break here and there.
Tomorrow sees me hit 150 days and my skin has never been better, apart from my face, which remains a problem, dry red and sore. I have been very lazy as far as my blog is concerned, not done a thing but was talking to Johnboy and have told him that I intend to start soon. I have been taking photos and been recording things each day. Just a matter of getting down on my blog. I have been amazed at the amount of people that are still viewing it, even with the lack of activity!!!
I need to ask you about asthma and inhalers but will leave this for another time as I am hogging your comments page, lol x
Take care and chat soon x

Siegfried
www.35yearsofhell.blogspot.co.uk

Louise said...

Thanks everyone for your kind comments. It would be so great if everyone with TSW could meet up at a big international location-somewhere hot like Hawaii would suit me!

Siegs! So glad to hear from you. I posted on your blog because your name came up in conversation that day and we were all wondering how you were doing. Glad you are battling through OK. Now go update your blog you lazy thing!!!!

x