Monday, December 23, 2013

Happy Christmas and a Wonderful New Year

Wishing you all A Lovely Christmas time and a very happy and healthy New Year !

Saturday, August 24, 2013

Hot Weather and Sore Skin!

Whew! The hot dry weather we have been having has not really agreed with my skin. It has dried out much faster and wen it gets dry it gets sore. As its been sooo hot I have felt like I have needed two cool baths a day- this has helped with the soreness but need to be very careful not to increase the dryness. 

So I have been keeping well hydrated by drinking lots of water and applying moisturiser. I have also stayed well out of the sun and the heat whenever possible. 

Luckily our patio area is in shade for most of the day after about 11am. I used to think this was a negative but now it is an absolute positive !  So I can still sit outside with friends and enjoy the garden not being in the sun! 

Currently wearing at least two light layers of clothing so that any sun cannot hopefully get through. I also have a shawl that has an inbuilt sun protection factor of 50 which is just perfect for wrapping up in and not getting hot while being protected. I wear a big hat and sunglasses too. 

So while I do love the sunshine I have found this year I have to take a lot of precautions in order to look after my sensitive skin.

Tuesday, July 9, 2013

Allergy To Preservative Methylisothiazolinone

According to The Daily Mail Doctors are calling for a ban on the use of this preservative methylisothiazolinone. If that is the case it is in my opinion a GOOD move! 

This is one of the preservatives that I am allergic to and it is increasingly being used in so many products-skincare, shampoo, wet wipes etc.

Its does increase shelf life so you can see why it is attractive to manufacturers and also don't we as consumers love a long shelf life on our products... 

However with an increasing number of people suffering skin rashes, scaling skin, and eczema/dermatitis it does not seem to be a good way to go.....

I know for me I have to avoid anything that has Methylisothiazolinone within it and that really cuts down what is available to me to use. 

Watch this short video to see what a diagnosis of allergic to methylisothiazolinone means for us.

Quote from the Daily Mail article above: 

  • An estimated one in ten patients with eczema or dermatitis is allergic to the preservative methylisothiazolinone 

  • The chemical has been increasingly used in products since 2005 to extend their shelf life.

  • It is routinely added it to moisturisers, sun creams, shampoos  and wet wipes"

Watch this 5 minute video below to learn more about methylisothiazolinone and its effects if you become allergic to it.  

If you have had medically supervised skin patch testing that shows you are allergic to methylisothiazolinone  it is very important that you avoid it by using products that steer clear of it.

Sunday, June 30, 2013

Contacting manufacturing companies for skincare products

My next mission was to find products I CAN use. I trawled the shops in our high street and well it difficult. I checked skincare, haircare and basic household products ad could not find anything that was suitable for me with the allergies

Next i tried the internet. I basically went about it this way. First i tried the brands i knew, brands my friends used and then did a search for skin friendly products under various search terms. 

This took a long time.... even when I found the brands often, surprisingly often there were NO ingredient listings! On some there seemed to be partial listings and a very few actually did list the full ingredients. So with many  could not tell if it would be Ok for me or not. 

I decided that the only way i could be sure would be to contact each manufacturer and ask them if the product would be any good for me. So i composed a letter and e mailed it out to  probably over 30 companies. 

This is the letter I used to contact companies. 

I have to say most were very helpful, some assigned a person to help me. Most gave me their ingredients or at least told me if my allergens were in the product or not. Only a couple did not reply to me. 

I eventually ended up with a short list. A very short list actually - of companies who had products that i can use.

It was now a matter of urgency to get those products to me as quickly as possible as do bear in mind - I had nothing to use for my haircare or skincare!! They were very helpful to me. 

Friday, June 28, 2013

Finding products I CAN Use!

Ok so I left the dermatologist with my three sheets of information about the allergens I was allergic to and I knew what to avoid. 

The sheets were very detailed and useful and also gave the other chemical names of the allergens so i knew what I had to check on every product. It was very clear and excellent information. 

Issue was what did that leave me I can use? 

When we got home we checked all my skin care, haircare and body care- not one product was any good for me- believe it or not every one of them contained an allergen!!! So they all went into a bin liner to be given away.

Next we checked the household products- things like washing up liquid, furniture polish, bath cleaner, kitchen cleaner- again Not one I can use- allergic to them all!!

Then the washing liquids and conditioner we used for clothes- Nope i cannot use that either !!

We ended up over the course of two days with a massive sack of pretty much useless products. We decided to give them all away.....

No wonder my poor skin was not recovering - it had basically been bombarded in our home with stuff I had become allergic to. So I was left with a huge sack of products i cannot use and empty cupboards and bathroom cabinets!!

Well there is nothing like a clear out !!

Thursday, June 27, 2013

Skin Patch Allergy Testing Results

I really didn't expect much at this point. I mean how could I be allergic to anything. I had never in my life before been allergic to anything!

I met with the dermatologist. I have to say the staff at the hospital who did the skin patch allergy testing were absolutely wonderful! They were calm, chatty , friendly and helpful. Nurses were just great and the doctor was very understanding.

I knew from the Wednesday check up when they removed the patches that had been put on , on the Monday that there had been 3 reactions... 

They intensified over the next day or two and by Friday I had 3 nice red welts or as they put it 3 "good" reactions! You can see them in the photo.

So it was easy to tell what I was in fact allergic to.

The dermatologist explained everything and gave me 3 sheets with the allergens on it and essentially told me to completely avoid ALL the allergens for the rest of my life. She said it would mean quite a lifestyle change....

I was initially so relieved that I FINALLY KNEW what I was allergic to !

However, within a few minutes of getting in the car and driving off I burst into tears!! This was so unlike me why was I crying about this?  I finally knew what to do and how to get better, I should have been happy???

I think it was partly the relief but also the realisation that with the allergies I now knew I had I would have to undertake a major overhaul of all the products we used and also adapt my life to avoiding them which looked no mean feat.....

Wednesday, June 26, 2013

Hospital Visit Skin Allergy Suspect!

Early January and back to the dermatologist. I saw a different one and he said that he was so surprised my skin was still red, sore  and inflamed and that it was time we got a deeper look and he ordered Skin Patch Allergy testing. 

He suspected an allergy to something and it was clear by now that it was not to the sun! 

So next step skin allergy patch testing!

Have to say I wasnt thrilled by this but after talking to my own GP I realised that at this stage and with my skin still pretty sore it would at least determine if I was allergic to any chemicals etc so better to have it. 

Explanation of  skin patch allergy testing here 

Tuesday, June 25, 2013

Emotional Effects Of My Skin Condition

I got down then made myself get up again emotionally. I could not let this thing beat me!

 I had been dealing with this now since June and it was now November. I was due to see the Dermatologist again in very early January. 

I had to turn down party invitations , meals out, Christmas plays, theatre trips. I could not cope in anywhere that was hot or even warm. My skin looked and still felt awful. Christmas was a dismal affair, I felt tired out and drained and just fed up with the whole thing really. 

This was all on top of  6 months of pain, blistering, sore red skin and missing out on the summer, being unable to drive for a long time, unable to visit anywhere or anyone as my skin had been scaling off and flaking everywhere. Even if it hadn't been sore etc i would have been so embarrassed to be out like that. 

My doctor had done his best. In addition to the steroids the dermatologist had given me. I had a lovely emollient cream and ointment which really helped the skin to keep hydrated and as soft as possible. I lathered that on several times a day. I had a special bath cream to soak in which also was very soothing and kept the skin very clean.

He helped me for when i got pain with the painkillers I had and the antihistamines which meant i could get some relief from the itching- and gradually the skin started to look and feel a bit better.

I was now off the antibiotics and had been Ok and free from any skin infections for several months. However we were all frustrated that although there was some improvement it was painfully slow and I was not better ....

I hadn't realised the emotional toll a skin condition can have on a person. I was tired a lot,sleep was fitful as I had to be so careful of where my arms were and my neck was so sore too and it was hard to find a good sleep position. I would get too hot and I felt awful and certainly not pretty at all. Even though I bathed once or twice a day i felt dirty(cracking,thickened, oozing skin does that to you !)  and had to rein my self in from staying in the bath all day! 

I cheered myself up over those past 6 months with visits from friends- they know who they are and they accepted me the way I was and the way I looked and were lifesavers for me in the long days I could not tolerate going out much.

I did not look in the mirror!  

I watched comedy on TV anything to make me laugh and forget about my skin! 

I couldn't work so I kept my brain active by learning about websites and reading when I felt up to it. 

I slept a lot too, partly the antihistamines and partly that i was so very tired.

 I meditated which helped me a lot to stay grounded and to know that I would beat this thing one day. 

I loved to watch the wildlife in our garden, the birds feeding, nesting , flying going about their day connected me somehow..

The kindness and compassion of the doctors the nurses, the chemist even helped me to feel a bit better in myself. I was always content that I knew I could book to see them if i got worried or needed more help. 

I developed an attitude of gratitude. I gave thank you cards to the medical people who helped me. Its hard to be scared and grateful at the same time, so i knew when they were having to do tests on me If I could keep grateful it would be easier. 

Last but not least my husband was with me every step of the way....he was and is my love, my rock.   

Some people commented that they were surprised I was not depressed but my answer to that is what would be the point?

Depression would not help me at all. I needed to be positive and hopeful and to keep going to look for answers with the medics. I never looked too far ahead, I lived in the moment. If I grabbed some happiness and joy from a day then that was just great! I knew I would beat this!!

On and On The Skin Condition Goes....

The blood test was soon after my visit to the dermatologist. As the skin on my arms was so bad still inflamed and sore and angry and weeping in places too and cracked it was impossible to take blood from my arm in the usual place. So it had to come out of my hand. 

I had not been too bothered by Blood tests in the past but in the hand was sooo painful for me.The nurse was great but there was still just a lot of pain and I was glad when it was over. 

Little did i know at that point that I would need several more BTs in my hand but anyway...

The results came back quickly and Fantastic I DID NOT have Lupus! I was overjoyed at this point , at least one of my worries was over.

However it was short lived as I was not getting any better. I stayed out of the sun, I applied the strong potent steroid creams, I used the emollients, I bathed in the prescription bath lotion. 

However there was very little improvement and although I was off the antibiotics and steroids now i was still needing antihistamines every day to relieve the terrible persistent itching and irritation. I still found wearing clothes a pain - literally. 

My skin was like red raw meat from the butcher. It would calm down a bit then flare up again regularly. I was up and down the the Dr. More Blood tests to check out all kinds of different levels and ....well I wont bore you with every visit! 

We were all doubtful by now that it was a sun allergy. I hadn't seen any sun for months and although there was indeed some improvement it was not enough for me or the Dr....

Sunday, June 23, 2013

What is Sun Allergy?

With a possible diagnosis of Lupus and a possible diagnosis of sun allergy and photo  sensitivity hanging over me, clearly the last thing I needed was to be in the sunshine. 

So even though it was the middle of summer at this point I avoided the sun. I kept indoors often with the blinds down as any heat or sun would make my skin sore and hurting. It was pretty miserable!

If I went out I covered up as much as possible. I hated being warm anyway at this point. I wanted cool breezes and clouds! I missed the summer really altogether! 

I did get quite down at this point as I thought IF I was really allergic to the sun how would I live life and what restrictions would it bring. 

I am an outdoor type person and love walking and being outside in the countryside, gardening etc and I was not happy thinking that I would not be able to do that. So I needed to find out more about sun allergy and how to handle it. 

The following links were useful to me.

So I spent time reading and learning and waited for the blood test.... 

Friday, June 21, 2013

What is Lupus?

Being the person i am I just had to know more about my possible risk of this skin condition being Lupus. So I researched and read and found out as much as I could. 

I went for the blood test and I told my Doctor I was worried about maybe having Lupus. He was reassuring and said it was unlikely in my case as I was not exhibiting several of the main symptoms...but a simple blood test would help us to confirm or not.

He gave me a brief summary of what the condition of Lupus is and what it means anyway.

So the links below are the ones I found most useful for discovering about Lupus and help available.

Thursday, June 20, 2013

Dermatology visit

OK so I was waiting to see the dermatologist. In the waiting room were so many people with skin conditions, even little children. I had no idea before that so many people had so many skin issues. 

I was doing my best to hide my own skin as I thought it looked horrible, yet it was so sore and itchy and inflamed I didn't really want any clothing on it. Being dressed for me was simply agony....Here is a photo of my skin on my arm at this point. 

When I saw the dermatologist she took a history then asked me to undress to my underwear so she could examine all my skin. This took a little time  and afterwards she came back with a diagnosis. She said i had severe sunburn! I was quite shocked by this as although we had been on holiday I had covered up, worn a factor 50 suncream, not sunbathed, and worn a hat so I really thought I had been very careful....

Anyway so in a bit of a daze i was directed how to use a steroid cream - a potent one to relieve the irritation and the inflammation.

 I was also shown how to cleanse the skin properly and to always apply any creams including emollients in the direction of hair growth only.

She told me to stay out of the sun and that it was possible I might be allergic to the sun.  Also that they needed to do a test for Lupus. I didn't know what Lupus was and was quite upset when I found out how serious it could be, but she did think it probably wasn't that but had to be thorough and make sure, so I needed more blood tests.

So it was quite a visit. At least I was pleased that they now knew what it was and how to cure it, though I was upset by the possible Lupus link and by the  possible sun allergy link...

I felt I was reeling a little at what the possible consequences could be of these possible diagnosis....I think the diagnosis I had at this point was photosensitive eczema.....   

Monday, May 6, 2013

Painful Rashes

The rashes spread up onto my neck and chest and maybe because the skin is so delicate in that area it became very painful, so painful that I had to get more painkillers from the Dr. 

This pain was scary  Then one day it all really flared up and my husband rang the Dr who prescribed a spray to help me with the itching and pain. The spray worked quite well. 

I went to see the Dr again and we both agreed I needed to have a referral to a dermatologist. 

The rash had started mid June and it was now nearly Sept. I was unable to work, unable to do much really as my arms , neck and chest were either irritated, sore, itchy or downright painful. 

Sleep was only possible with the anithistamines and  I was ready so ready for this to doctors had done everything to help me but the rash was not going away....

Sunday, April 28, 2013

Scabbing Skin and Fresh Rashes!

If I could have spent this time totally in a cool bath I would have! I hated these scabs! I knew they were good sign and i knew they were protecting the delicate skin underneath but they were so hard, so ugly and i wanted rid of them!

Well they did start gradually dropping off- usually in the bath but occasionally on the sofa or in the bed!! Yuck! We were changing the bed everyday and keeping sheets on the sofa to catch the scabs! Well it wasn't pretty but it was a necessary part of healing- there were just sooo many of them - all up my arms.

I cannot recall how long it took all the scabs to fall off but it took a while. My arms were very stiff and sore and the itching and irritation was terrible so i stayed on the meds. I stopped the steroid tablets though as Doctor only wanted me on a very short course.

I struggled to wear any clothes - i could not wear anything on my arms at all and had to cut up clothes so they were without arms. I felt awful and must have looked terrible! I tried to stay positive and make fun of what was going on -even though I was really quite worried. Just took one day at a time and tried not to think how long this was taking. I saw the doctor regularly and he is very supportive and helpful.

Anyway eventually they all dropped off and left sore red skin underneath but ti tlooked quite healthy.

Then a strange thing occurred I noticed another rash starting on my elbow and it was spreading up my arm again. It also started on my neck and chest. 

I went to the doctor and he thought it was more of the same but what was it?? Over a few days it became very sore, very itchy and it got worse....

My Doctor Visit For My Erupting Skin

I rang the doctor surgery the next morning, it was a Monday and typically there were no appointments left. The receptionist asked if I needed to see a doctor urgently- hmmm I thought well no i am not bleeding or having breathing issues so No - but i said maybe I need to see someone- so she booked me in with a nurse for half an hour later.

Thank goodness our doctor is close by as the walk there was a nightmare, my arms felt heavy and the blisters were now filled with a weird fluid. 

I went into see the nurse who took one look at my arms and said you need to see a Dr today - now! She said she thought it was infected and that i would need antibiotics. she didn't really want me leaving the surgery and sorted out for me to see the Dr as soon as he had a gap.

I went in to see our doctor, I had seen him before and he is a very calm, measured doctor, nice and professional. However I saw the look on his face when he saw my arms and knew he was shocked at what he saw.

 I revealed one arm at a time as I told the story of what had occurred to date. He carefully examined me and wanted me straight on antibiotics and to come back in 2 days and to ring if it got any worse.I also had antihistamines for the itching and painkillers for the pain. 

In the meantime to keep the skin clean with clear fresh cool water only. He said I should certainly have booked in as a emergency!!

I went back in 2 days and it was a little better and certainly no worse but not good enough for him and so he also put me on a short course of steroids and to come back in 3 days.

The pattern continued with me going back every few days to be checked and things started to improve... the blisters started to burst and ooze - it was not pleasant , very yucky actually and I covered everywhere i sat with sheets.

 I bathed in cool water only my skin could not bear anything ese at this stage. After a few weeks the burst blisters started to scab over. I ended up covered in hard brownish large scabs all over both arms. The next stage was for them all to drop off. Dr was hopeful that this would be coming to an end.

However there was an unexpected turn of events....

Thursday, March 28, 2013

How It Began

So how did it all start? Well we were on holiday in a wonderful sunny climate and I was diligent as usually about wearing sunscreen and keeping covered up and in the shade. I am very pale skinned and I can't take much sun so i am very careful.  

We had a great holiday, sightseeing, resting, relaxing, quality much needed time. On the day before we were due the fly back I noticed a small bumpy rash on my left forearm... it was a bit sore and a little itchy but nothing to worry about much. 

To be cautious I went to the local chemist who thought it was a heat rash and gave me some gel to put on it and said to stay out of the heat. It was our last day anyway so this was not a problem for me. 

Nothing changed much , we flew back to the UK , went shopping the next day in our town and drifted off to sleep that night. I woke up on a Saturday morning and there was a BIG CHANGE - looked at my left arm- it was covered in large - I mean - HUGE blisters!!

 They sort of grew up my arm over the course of the next few hours and I noticed my right arm becoming red too. I still wasn't too worried but a bit perplexed and simply bathed them in cool clean water. 

The next day I woke to huge blisters on both arms all over my forearms and just past the elbow crook and fading out as they went up my arm. Today Sunday they were much more angry, fluid filled and my arms felt "heavy " I was beginning to experience some pain and  not be able to use my arms. They felt stiff, sore and strangely unreal.

Was i worried ? - well yes a little - but I did not count it as an emergency and thought I would go to the doctors tomorrow....more in my next post......

Thursday, February 21, 2013

The Importance Of A Good Doctor

I wanted to start this blog with an expression of thanks to my healthcare team. In all my experiences of my skin condition one of the main things that has kept me going and kept me calm is the caring, professional and calm approach of my family Doctor. 

Looking back I feel it is so important to be able to talk with your family doctor, to be honest how you feel, for them to be honest with you, and to feel able to ask questions, discuss concerns, for them to listen to you  and to feel like you really are a partner in your care and treatment. 

I was so lucky to have that communication with my Doctor. later I will share some of the most useful questions I asked and the questions I was asked to help to advise me and help me to recover and deal with my skin condition. 

For now I just wanted to say thank you to my doctors-they know who they are- for sticking with me through all of this quite horrible condition, for answering my many queries and questions and helping me to remain calm and positive.

In this blog I hope to share some of my experiences and some of the skincare I can use in the hope that some of it may help others going through similar experiences.