Less red.

Things are looking up.
Yay.
Have been applying the 2 creams diligently twice a day and can see a huge improvement.
Also notice I seem to scratching when stressed.  I can see a trigger. Ooo which is weird and yet odd.
I still have areas of dry skin. But the itching is so so much better. It's at a level I can control.
Rash in feet it developing. It's still looks like circle lupus rash. But gave had results back negative, so must be something Else.
friends at work have said how my eyes look better and skin. So yay.
I feel better. Itching constantly really gets you down, so feel 100 times better.
Am also really watching what I wear next to my skin.cotton suit jacket etc which rubs on neck instead of nylon.
Nails haven't been filed down in a week. Which is fab.very sore when I have to file till they have no edge to scratch. Even the smallest edge can cut skin. Unfortunately it also results in tender finger tips.
Only thing I have noticed is on ribs and neck the skin has a bruise. It's sore to touch. Wondering if I'm rubbing very hard in the night?
Any way. For now. Things seems better.

Just the way

Isn't it just the way. I have had a red itchy rash for over 2 months. ...finally I gat an appointment and  the rash has started to clear up. ..its still there but not in your face red....look at me I'm itchy and angry. But more of a hmmmmm. ..I'm dry. Irritable and light pink...lol
Ok might be a little fed up.

Any way derotologist was today.
And I dint have lupus, which was the expected cause. and basically they have no idea what is wrong with me. 😕

So this is the plan. 2 creams.  One steriod one for 3 weeks.
One keep using.
Wait for rash to appear and go crazy, like it does every year.
Then ring up and go in within the week. Get a biopsy and look further....

Not very happy about this as once rash has erupted.
I'm in pain. 
I itch like crazy and basically look like a red zombie which gets funny looks off people as have marks on skin and face etc.
not to mention I have to bandage my arms so I don't scratch and wear long sleeve tops in summer so i dont get UV rays of sun and its a barrier to stops me scratching. Sigh
Ok deep breath.

Have applied cream to back of neck for reaction test. Seems ok. Will try somewhere else before bed.

Main left chest area which is always the trigger spot has been very tender to the touch today.  Not sure if it's because nails are so short, when I scratch in night I have to press down so hard to get itch relief. Therefore bruising the skin?

Feet have also started to erupt 😑

Dry

Dry. That's the word to describe my patches.  They are like sandpaper, without any moisture. I've never touched skin so dry.
I was expecting this. Last Sunday was my worse night yet. Bath night.
I have been using double base a neutral cream for baths for excema and very dry skin. And tonight I didn't. 
Yes I'm dry and my elbow is madly itching but not that burning itch I get with ointment.
It's odd running skin across stomach then the skin is like parchment at the sides. But adding cream even vasaline seems to make it puff up. Go red and raised and itch like crazy.
So tonight I try natural. See if my skin can produce it's own moisture to recover from the bath.
Only a few more days till hospital.  I can't wait.
This weekend has been mainly better. Less itchy skin but there has been itchy eyes. But over all the intensity of rash has gone down a couple. Of notches.
Brought 2 cotton shirts for bad days. So will use them if itchy.
But feeling happy hospital week has arrived.  Maybe some answers. At the other end.maybe no idea and just more tests :/

Can also see rash coming out on face. See photo. It's a underlying redness.

Tears

This morning I cried on the way to work.
I wasn't stressed or late. I it was just a normal day. But my rash has developed around my whole neck, all of chest is red. Lying in amy position in bed make s my neck sore. As if skin folds or gets hot.  It get very itchy.
I was depressed. Like it's still JANUARY and I have a rash!!!!!
My eyes are still sore. My nose is so dry and flaky (that really makes me upset)
My neck is sore and inflamed ...Heaven help me when any sun comes?

Anyway had a bit of a cry. Lovely colleagues cheered me up. I know there are people a lot worse off and I need to put it into perspective.
Ordered some cotton shirts. Hope that will help. A lot of my clothing for work is nylon, which I think is making it angry.
Currently patches on side are larger than out stretched hands. I have rash around neck and in back right shoulder.
On elbows. On face. Ans marks on feet.
Hmm. ...also noticed my glands on neck are swollen.
Less than a week to go ;)

Blogging for my sanity and keeps my hands busy!

Hmm..I'm quite pleased with myself.
Managed to somehow get dressed and get into work. It's amazing how being busy and having to deal with students problems. Kept me from ripping the skin off my neck. Though it would be hard with no nails. They are now so short they are tender. I thought 'oh if there sore it will hurt to push in  and try to scratch.' But oh no the itching is relentless.  It overrides and logical thinking.  It is all consuming.
Any way. I'm in work. 

There are, I admit a few times I rub my sides. The itch unbearable. But on the whole it's okay. I mean I'm burning like sore and stiff, but it's ok.
Noticed as soon as I got stressed I started scratching, like really going for it. Luckily a friend managed to softly say 'stop scratching' & I did shamefully.
I can't even imagine what it's doing to my skin to scratch over rawness like that?
Took a antihistamines this morning.  I don't have much faith in them. But I think today i felt it work (or maybe hoped like a placebo) any way it's one a day. 

But I was very very itchy by 6pm so popped another. Yep...resulted to drugs lol

I feel itchy at the moment but not that rip your self to pieces itch...more...The I need to scratch but am resisting Itch.
Every day is a day closer to the hospital and how fully a cream or tablet to stop the pain

Also going to look at diet.
Plus I have to admit. Only drank half a bottle of water over 2 days!
Setting haw bone to vibrate every half hour to remind me to drink.

Photos don't show the redness or raised. But it's block raised.
One of torso fills whole side now.
Neck  & chest

Non stop itching

Last night was the worse night for some time. I was awake most of the time. 
Usually a itch works like this.
Itch - scratch - relief
And at the moment and last night
Itch- scratch- still very itchy.
I am in a constant state of itch.

You've  all had a itch. There impossible to ignore.  Well imagine that on most of your body. Constant. That's where I am today.
I feel like my skin is tingling. It's unpleasant,  painful.
Not sure what triggered it
I think wearing a nylon type suit jacket is not helping at work.it rests around shoulders and neck exactly where raah is.

Lots of likes were yesterday like....'Ooo your necks red'.. sigh

Hospital Wednesday.  At this moment I want it now. I can't cope. Just lying here writing this and my chest and shoulders and neck feel like there on fire.
Hot so so so itchy and painful.

AND I have to get up and go to work !!!
Feeling quite down today.  Lack of sleep. Constant stimulate from skin.
It's only January.  Can u even imagine what my skin will be like  when sun uv gets near it.

I feel so down. I have filed nails away but still manage to push hard enough to scratch. I wonder if my skin would be bleeding if I had nails ?

Water

Okay.
Been pondering, like you do on a Sunday.  A d it's well documented that water is good for cells and skin. So my goal in this first Week is to make sure I drink enough water.
At the moment I usually drink less than one of those little bottles of water a day. Supplemented by coffee.
But obviously this needs water.
So goal this week.
Drink 2 bottles of water a day at least.
That means I need to make a effort to drink one by lunch then refill for afternoon at work.

Will log in next Sunday and let you know how it's gone/Improvements if any.
Biggest areas of concern this week.
Eyes.
Side areas.

Lupus?

Received a letter of a copy which went to GP
It stated that I might have lupus erythematosus.  Well hmmmmm.
I have Googled and to be honest things seem to match up.
The rash mask. The raised rash.
It mentions fatigue.  I didn't think this was me but then my friends all said your in bed by 9 pm lol
Which is true 😕
U didn't mention but also get funny round marks on feet. Sometimes it's like very dark blood spots under skin. Don't dissappear when pressed.
Can happen when on feet a long time. Don't hurt don't itch.  But along side this i also get round marks. Circular with sore itchy edges. About size of a 1 penny.
Not ring worm. Not like that.
Leaves scars when healed.
Some photos on Google look liked this too?
One odd thing about torso rash is that it seems to start off for a few weeks as round too. With the central area like feet normal skin colour.
But has worked it's way out across skin. Constantly itchy and uncomfortable.
Last week in work i was so itchy.
Also skin is extremely dry.
Brought some baby sensitive moisture cream yesterday at asda and am trying on one side of torso.
To be honest that is the side that is itching lol
But I have no cream at the moment.. The wash type cream is making it worse.
GP useless. So will wait for hospital.

Photo of foot healed.

Need appointment now.

Well my next appointment is end of February.  And I am itchy.
Eyes are so bad.
Torso sides are now areas bigger than my hand.
Rash on neck
Rash on shoulder...
Hmm. .....
Rang dermo and they have said I can go in on 21 Jan as I am in flare up.
Thank god.

Gallbladder operation

I had my gallbladder removed. All went well. But it shows you how red and sore my arms looked. When I awoke from operation they asked me if I had two ugly looking rash on arms before I went down or was it new.
I said I already had. But obviously it was noticeable.
Great.

Anyhow the next morning in hospital I found two patches if red raised itchy skin on torso one on each of my sides.
The nurse said it was prob a reaction to cleaning stuff the wipe over torso as that's where they operate.
The thing is these areas have not dissappear.  They are still there and it's now 11 weeks ago.

Hospital November

The derotologists at mayday hospital were so helpful. They listened and looked at photos and really for the first time sow one was interested.
For the last 10 years or do my GP had told me I had ple. Photo light eruption.
Straight away they were like .no.
Ple the symptoms go in a week or so. Not long lasting for most of year.
Ok.
But I did have a rash that seemed to be triggered by UV light.
Lots of words were thrown around including lupus. I was set down for blood works.  To go back in Feb and would have a skin biopsy on rash when erupted.
At last someone was doing something! !!!

Ok Where I'm at now.

Last year was very bad for me. My worse year yet.
We went to the caravan on the Isle of Sheppy for a week. Before we left I was bad. But being exposed to sun....wow my skin erupted.  I was so ill I thought I would have to go to a and e.
I was glowing red. Most of skin raised hot and so so itchy. ....like def con 5!
I was in trouble.
In the end I had to cut holiday short. I was basically living the bedroom.  Covered in cream and bandages.

At home managed to see an emergency dermo clinic. Was told I had to go to hospital.  Wait for appointment.
The appointment was for end of November! !! This was beginning of August. Hmm mm mm. ....not so good.  I knew the raah would go in places before November.  So I stated to take photos.
Thank god I did.

Neck...The big one

Ok the neck.
Over the last 16 years this is the main area of concern. It's always got some sort of red area.
The GP felt my cells were damaged and so easily irritated.  This can be a necklace. A t shirt neckline. The car seat belt. Material.
You get the idea. Once triggered...we're talking endless itching. Redness. Then weeks of rash.
The rash itself it pretty similar on arms and torso and neck.
It's red. Raised and itchy. When I say raised it can be like a platform of area. This will go down and raise when irritated or triggered.
Triggers can be anything from scratching or rubbing because itchy, to being in the sun for like 5 minutes (imagine hanging out the washing) or coming into contact with a dog.

Arms

Ok arms.
Well they start about the same time as the sun  appears. By April my arms are red. Super itchy and I spent most of the time in tube grip bandages.
I can't explain how itchy I am.
I scratch until I bleed. Even though I continually cut and file my nails down till its sore to touch.
I am really careful too. In the car in the summer I always cover my arms when driving or out and about.
I always wear a scarf even it's 80 degrees to cover neck.
But to no avail. 
Once the rash appears, it's pretty much there for months.

Eyes.

Ok there are a few main areas. As seen there is a mask like area which comes around eyes.
But that's not all. All year my eyes are dry. Extremely itchy and I cannot stop rubbing them.
The whites of my eyes turn red and lumpy if you can imagine.
I acctually 'find' myself rubbing ans have to grab my hand to stop!!!!!
I seriously have no self will with the rubbing. When it's really bad I wear glasses as I have to get through then first lol
I joke but it's awful. Every morning I wake up they are gunky. If I touch the as they are quite weepy in morning I set them off on a incredibly itchy cycle...dying to be rubbed.
This has resulted in sore skin around eyes. Which hen flared up has the appealing look of a elephant. Skin all wrinkly, thick and crusty.... (told you it was appealing)
And even like this when the skin is sore to touch I can still go in for a mega rub.
Often people will say,
'Ooo what's wrong with your eyes.....'
Sigh....

Work

I think one of the hardest things is work.
I work in a school so there are hundreds of kids.
'What's wrong with your face miss' was a daily occurrence last year.  Seriously I thought I would have to get a badge made up!☺
Basically it is embarrassing.  People on the street, or in shops stare at you, the don't mean too but they do.
Last year I felt very self conscious.

The mask

Here is a photo from about July 2014.
I had developed a dark red rash which lasted months. It went around both eyes. Hot. Red. Dry and itchy.

Rash life

The rash.
Well it's been my constant companion for over 16 years.
Been there when my youngest daughter was born, she's now 15.
Was there when I learnt to drive.
Had my 20th year wedding anniversary blessing.
If you look closely in the photos you can see the gaze of pink around my face and across my chests.
I desperately wanted to wear a necklace,  but as the day went on the rash got more aggressive.
What I'm waffling on about, is that the raah is part of me, always itching,  always present, but this hopefully is about to change.
To begin I will show some of the photos I have taken from last year ranging from February to September 2014.