#TakeControl

A year ago today I saw my dermatologist for the first time and after looking me over he told me I had a rare skin disease called pityriasis rubra pilaris. . Thankfully he wrote it down for me. I didn’t realise at the time how impressive it was for him to diagnose me so quickly. Last year I lost control of so many parts of my life. It wasn’t all down to the PRP, another reason was the job I started last year. Although I did, and still do, love the job,it meant I spent 3 days of most weeks living out of a hotel in Newcastle, the other side of the country. Then there was the slow and painful breakdown of a ten year relationship. While the PRP and me being away contributed to the end of the relationship, they wern't the only factors.

So what did I loose control of?

• My appearance
• My time (most of it seemed to be driving between blackpool and newcastle, or going to the hospital)
• My personality “This disease can eat away at your personality.  You can become too tired to engage with people and when you do, you can end up only talking about your symptoms.”(from my blog Wednesday, 3 June 2015)
• The clothes I could wear. I spent most of the last year in the cheapest primark t shirts I could get because the creams I put on meant I had to bin them after a wearing them a couple of times.
• Where I slept. Part of each week was in a hotel room and the rest of the time I was in the spare room because of the amount of skin I was shedding.

You get the idea. So that was 2015. Now we are well into 2016 and my skin seems to be well on the way to recovery. I have moved into a flat in Newcastle and I am doing everything I can to retake control of my life. I have taken control of my appearance by going to the gym for the first time in years. I've lost over a stone in the last 5 weeks. I am taking control of my health by emailing the staff at the local hospitals dermatology department. This has meant that instead of waiting till august for an appointment, I now have an appointment in 2 weeks time. Anyway, thats my mantra for the time being #TakeControl

Dermatologist update- good news

It looks like my emails to anyone I could find in the dermatology dept of the local hospital have paid off.  All going well I should be seeing a dermatologist in the next couple of weeks rather than August.

Between dermatologists

I’m reluctant to write this post as it may come across, especially to my foreign readers, as knocking the NHS.  I want to state for the record I think the NHS is a fantastic service, it is one of the best things about living in the UK and it needs to be defended and supported.

Now ive got that out of the way, the last time I saw my old dermatologist was Christmas Eve.  I then moved to Newcastle at the end of January and signed up with a new GP.  My GP said it may be about 3 months before I got to see a dermatologist and I got a letter on 11^th February telling me I was on a waiting list and to phone back in 6 weeks’ time if I hadn’t heard anything.  So I phoned yesterday and was told it will probably be August before I get to see a dermatologist.  AUGUST!!!!

A couple of things to note:

• -          I realise my skin is improving in leaps and bounds at the moment, and its not like I need the kind of support I needed this time last year
• -          I know the NHS is stretched and these waiting lists exist for a good reason
• -          But AUGUST!!!!!????

So I have been in touch with the following people to see if they can help:

• -          My old dermatologist via his secretary
• -          My GP surgery
• -          The Dermatologist department at Newcastle RVI

If anyone else has any suggestions, please let me know.

Look at my belly

So other than the occasional vain selfie there hasn't been a photo for a while. So here is my chest and belly. As you can see the islands of soaring have spread to the point where there is now a web of red.

Sweat

I'm sweating! Not all over but my legs, the sides of my stomach, the middle of my back, my nose, my hands and around my temples. It takes work for me to start sweating. 45 min spin class followed by 15 mins in a sauna. But the fact that I am sweating is an important step on the road to recovery.  

My chest is still red and blotchy and my face and scalp are still flakey. But things are heading in the right direction