PSORIASIS ASSOCIATION CONFERENCE

 

On Saturday 9th May 2015 Psoriasis Association held there annual conference at the beautiful Whittlebury Hall in Northamptonshire.

It was a pleasure to be invited as a guest speaker at the conference.

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I spoke about co-management of Psoriasis and Psoriatic Arthritis. Diyen my partner came along too, he filmed me speaking, and I have to say it always hits home harder when I hear myself talking about my journey. I know it’s all happening but I guess because I am living the moments every day I forget how tough things can really be sometimes. Maybe it just goes to show it is who I am and the way I deal with these chronic conditions is normal now.

But I always question “what is normal” everything is always changing and I am exhausted trying to keep up with it all.

Anyway back to the conference, this was the first one I have attended and I have to say it was very good, lots of new information and advice. Also an opportunity to meet other sufferers, share advice and experiences.

It was great to catch up with Victoria, founder of Psoriasense, we have had the pleasure working on a few projects together.

Some interesting topics were covered

  • Social media
  • Treatment decision making and psoriasis
  • What role does diet play
  • Co-management of psoriasis and psoriatic arthritis

When I was first diagnosed with P, 24 years ago information was very little and no support groups at all. It’s refreshing to see how much support there is out there now. A big thank you has to go out to those who suffer and share their stories and create awareness.

NO MORE SUFFERING IN SILENCE

Diyen knows a lot about the conditions and how hard things have been for me, he also found the information extremely beneficial. He also struggled to understand why so much is missed by consultants and why referrals are not made by GP’s, actually he was extremely annoyed! Since then he has been asking me a lot of questions, I think his making sure I have all the support I need.

If you haven’t had a chance to attend the conference I highly recommend you do! I know many of us touch base via social media and the Psoriasis Association Facebook group but meeting in person would be great. I always look forward to meeting fellow warriors!

Oh and the goodie bag is amazing, some great products to try out!

Some great samples to try
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Bouncing off the walls in pain!

So I thought I had mastered this and had things under control!

After many years my skin is at it’s best with the help of my buddy Stelara. Injections have never bothered me and to be honest I prefer it to taking tablets, weird I know! Guess I’m immune to needles with the amount of blood tests I’ve had over the years. I have to say we are getting on just fine! (I’ll fill you in on that on another day).

So where was I? Oops lost track…that’s it, bouncing of the walls in pain arrrgggghhh!! So, as the Psoriasis wasn’t enough, Psoriatic Arthritis decided to pay me a visit and decided to stay!

Not going to lie its driving me crazy and really getting me down. The pain is ridiculous. Currently it is affecting my legs, back and hands. It started in 2012 but flared up really badly at the end of 2013 and since then its been downhill.

My back is off the hook today its hurting like mad, to the point I cant even touch my back. Its rock solid and stiff 😦  I’m sat here with two hot water bottles to try and get some comfort not to mention popping a few pills, Naproxen.

I had an MRI scan a few weeks back and am waiting on the result to see what the hell is going on! My consultant is being cautious before trying another treatment.

I have tried a few options treatment wise, but nothing has helped. Methotrexate, Spinal infusion and Physo are all a dead end.

The thing that really gets to me about the PSA, is I can feel myself deteriorating. Every day, I feel that little bit weaker and the pain getting worse…I have no doubt things will get bad before they get better!

Until then I’lll keep rocking with my walking stick….Obviously, I had to get one that reflects my style 🙂 PhotoGrid_1407945950971