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.....