Monday, June 10, 2013

Damn you Bus Eireann and Psoralen! Warning foot photos and a rant ahead!

As a lot of you know, I have psoriasis.  I've had it since I was 5 years old and I'm nearly 33 now.  A couple of years ago I had some phototherapy aka PUVA aka light treatment in St Vincents Hospital.  It took 16 sessions to clear my skin and I was really happy with the results.  When my sister in law asked me to be her bridesmaid for her wedding in August my first thought was to get back to my dermatologist so I could have the light treatment again and look swishy in  my dress.  I had my appointment in April and had a phone call soon after from the nurses to book me in for Tuesday 4th June, which would give me 9 weeks before the wedding.  Last Tuesday I went up by bus for my test run.  You lie in the bath of Psoralen (which makes you absorb the UV rays a lot more that you would normally) for ten minutes then the nurses tape a template with 8 windows to your back and expose the skin for different amount of times, starting at 12 seconds or so, going up to almost 2 minutes, and this will be your starting point for the PUVA as it shows how quickly your skin burns during exposure. You have the treatment twice a week and after the bath you have your UVA exposure which looks just like a stand up sunbed.  I was given a small tube of factor 50 in case I got caught in the sun and was told that my chest area would be most delicate and to make sure I didn't get burnt there.

After my treatment, I walked out to catch the bus around the corner but my heart sank when I saw the bus pulling away.  That meant the next bus wasn't for an hour AND didn't stop at St Vincents so I had to walk down to UCD for the next one.  I put the factor 50 cream on my face and neck/chest and that was all I had to put on.  I was wearing 3/4 length leggings and some light summer shoes from Penneys.  I was in the shade all along Nutley Lane but the sun hit me as soon as I turned the corner and started walking to UCD.  I covered my arms with my cardigan and it took me about ten minutes of walking before I got to the bus stop. Thankfully the bus stop was all shaded from the sun and I sat and waited for the bus.  I was looking  forward to starting my treatment and having nice clear skin and a tan for the wedding.

Taken Wednesday, covered in after sun and no blisters.
On Wednesday afternoon I noticed that my feet looked a bit red up as far as where my leggings had ended.  It wasn't painful but I started to pile on the after sun and aloe vera gel to try and clear it up before my Friday session.  By Thursday it was even redder but still wasn't sore or anything.  I kept my skin covered up when I was outside as I didn't want to aggravate it any more.  Friday morning when I woke up my feet were painful and I put on some ankle socks with my runners and some long leggings.  I phoned the hospital to tell them about it and I was told to come up so they could look at my back anyway to see how my skin had responded to the light.  I painfully limped down from UCD to the hospital and explained the situation to the nurses.  Of course I couldn't have my treatment, I knew that much already.  I was asked several times if I had been out in the sun and I said that I wasn't, apart from walking to the bus stop after my treatment on the Tuesday.  When I got home from the hospital I took my runners and socks off and when I tried to put on a pair of flip flops in the house I couldn't as it just hurt too much to have anything touching my feet!

Saturday morning my feet looked to have started blistering up along my instep.  They felt really hot, a dark purple colour and really painful to try bend my feet when walking up stairs etc.  It got too much to bear  by the afternoon and I phoned the chemists, who asked me to come down so they could have a look at them.  I half put a pair of flip flops on and my hubby drove me down to the chemist, luckily they have a car park right at the back door so I didn't have far to hobble.  I was given gauze and told to wrap them up for a couple of days but after 24 hours they felt even hotter and more painful so I took the bandages off.  I phoned the hospital this morning but was told just to let them heal naturally and again was asked several times if I had been out in the sun. My PUVA treatment is now on hold until my skin has cleared up and I'm so nervous that I'm not going to be clear before the wedding! I'm also terrified that my feet are going to scar and I can't even walk down to the doctors to have them checked!

Taken Sunday when I removed the gauze and bandages, you can see the blisters and the darker purple bits where it's all bumpy
I'm cursing Bus Eireann for taking the St Vincents stop from their timetable apart from a poxy couple of buses every day and I'm just so annoyed that my feet would burn this badly after just a few minutes in the sun.  I HAD to walk to the bus stop, how else was I meant to get home?  I know that the Psoralen bath makes you absorb the sun but surely if it's that dangerous you should be plastered in factor 50 after every hospital visit!  I feel like crying, my feet are so painful and I haven't been able to wear any shoes or have a blanket or anything on my feet for 4 days now.

Taken this morning (Monday), you can see where my feet are swollen and blistered.

If anybody has any advice on what I could do/use I would be very grateful! I'm eager to start my treatment and need to get my feet sorted out ASAP!

I apologise for the feet photos, I don't like my feet at the best of times but I just wanted to show how bad they have gone over the last 6 days!