October 21, 2007
happy to help :)
I’ve copy and pasted this blog entry from another blog. I answered Summer hall’s question who wrote in reply to one of my blog entries. I put my answer here because it was a long answer and I also thought it would be a good blog entry. Summer is in search for a cure for her husbands eczema which is on this scalp.
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Hello there
From what I have read to date, there is still no cure for eczema. Research on this disorder continues. Meanwhile we’re left to manage the situation. The good news is there are many ways to minimise the itch and distress and discomfort that comes with eczema. From what I’ve read too the first thing you can do is to find a scalp care routine that would suit your husband. There are many products you can use that is over the counter, natural remedies etc etc. Personally when I was on the journey to find my own skin care routine, it took me about 6 months to get the routine down solid. But then I had to change the routine many times because, I moved countries or the creams I used discontinued etc etc… Much money was wasted Its trial and error. But don’t give up.
Secondly there are people out there who have the same disorder. Problem is, the severity of eczema may differ from one person to another. So what works for one person may not work for another. There will be people who will tell you of some miracle cure or what worked for them got rid of their eczema. My advise is, with respect to the advise giver, is to get eczema educated and filter the information. what is useful for you take it and what is not discard.
I have a website I started about eczema at http://www.freewebs.com/eczema. I set it up for peeps in malaysia. but click on the hyperlink – ‘other eczema websites’ This link will lead you to other eczema website that I have found useful. They are full of information and hopefully you can find a support group for yourself and your husband.
Now after all that, if your husband has the eczema on his scalp diagnosed as eczema, then its called seborrhoeic eczema. I have it too. My dermatologist said the difference between dandraff and SE is the yeast factor, in that SE has less yeast than dandruff. So I guess the point is to balance the yeast on the scalp. Home remedies that I have come across is using apple cider. The other non home remedy is using T-gel shampoo. I’m now using eucerin shampoo which is working for me. For the itch if I’m at home I will wash my hair so that I cool my head down. The itch some how stops.
I hope what I’ve written will help you some. So good luck. Let us know how you and your husband get on.
Happy to help
ItChY
October 8, 2007
Separate rooms
A couple of months ago I was given a job to teach sex education in schools around the country. The Eczema on my body was so bad that when everyone on the team was sharing rooms I had to pluck up the courage to ask for a separate room. Not wanting to look like a Diva I also requested the room to be adjoining to the other girls.
You see it was so bad that I had to wrap my body! I did not want to show the other girls my body or that I was wrapping my body or even seem to look like I’m hogging the bathroom because I’m putting on my lotions and creams. Its embarrasing! Plus I need time to put on my lotions and potions.
I was a girl guide at school. I attended a jamboree that we organised. It was the late afternoon and it was time for us to have a shower before we sit down for dinner. The bathroom was a communal bathroom and there were no partitions. Some of us had forgotten to bring our shampoos and such so we shared what we had with each other. One of the girls asked me if she could borrow my soap. And I said sure. It was oilatum. Fantastic for dry skin. And fantastic for normal skin. She then smiled and picked it up. She had lifted the soap about 3 inches away from the soap box when someone whom I thought was a friend grabbed this girls wrist holding the soap. She then whispered in her ear, the soap belonged to a person with skin disorder. The thing is I was right there and could listen to what she said. It was then I realised how people actually felt about skin disorders. From then on I’m very shy of sharing rooms with people I don’t know and who don’t understand.
By myself
ItChY
October 7, 2007
sometimes we just don’t help each other.
About a month ago met with an old collegue at my old work place. (A TV station) He greeted me by saying ‘hello pretty, hello pretty’. I greeted him with a smile and a hello back. We exchange stories of times past in our lives. Then he asked me what I was doing there in the station. I said I was there for an interview on Eczema. To which he replied that he had eczema too and relayed that he just at times could not stand the itch. And when things get worse for him he goes to the doctors and get an injection. As he was telling me his story he realised, “oh so you have eczema too? So you’re not pretty after all. HA HA!” To which I answered, “God is alway fair”. I thought other sufferers would empathise with other sufferers. I guess I though wrong..
Learning
ItChY
October 3, 2007
Websites
I’ve added to the margin on the right a few websites of Eczema Associations and groups from around the world. I ‘ve even started my own to help and share with people with Eczema.
I’ve received many complaints on my blog that there is not enough information for people with eczema on the net. So in my website I will try and find these information and try to decifer them to digestable paragraphs. I hope this will help.
Another complaint is the feeling of loneliness that comes with this disorder. So I have added a forum in my website where you can share comments and experiences. We’re not alone. We never are.
This website is for everyone. I just started it so there are a lot of blank spaces. In time I’ll fill them up. If you would like to contribute to my webpage please let me know. All help is much appreciated.
Sharing
ItChY
September 18, 2007
dusty and anxious
I’ve moved homes numerous times in my life. I know what it entails and I know that there’s dust and I know that its stressful and hard work. You also need to plan things so that you don’t waste ‘moving’ money. I also remember my eczema being aggravated. Sometime to the extent that its so bad that I have to stop helping and help myself. I remember feeling guilty when this happens because you see everyone in the family helping and there you are. 😦 Itchy. When I’m like that I take a bath to wash off the dust and dirt. OH THE PAIN!
So here it is. My hubby and I are getting the keys to our new house tomorrow. Although I’m so happy that we have a house and we have Ideas to decorate it I’m feeling very anxious at the same time.
Dust for me is a big culprit that will aggravate my eczema. It also makes me sneeze big time. I’m just anxious with all the packing I have to do and the dust I need to fight with. I can just feel the eczema starting on my face, neck and arms. I hope I can do it and that the eczema will not be so bad. Otherwise I have to stop when its bad and start again when it calms down. We also need to move into the house within the next two months. So stopping and starting will definitely compromise the timing. Then after we move I have to deal with the renovations. More dust! I can feel my eyes turn red and itchy and my eczema will start in my eyes! There was one home we move into where there was a construction sight right in front of the house. thought out the time we were there, my eyes were blood shot and the white of my eyes were red, raw and soft to the touch. I looked like I had monster eyes!
I’m going to try to take all the precaution and I especially don’t want to bring dust from one place to another.
Anxious
ItChY
September 11, 2007
What to bring??? What do i wear???
I’ve been away working outstation. And this his how I pack and what usually goes thru my mind when I’m packing. Be it one day or two days or a few days.
Now usually girls take so many bags of girly stuff, like shoes for they many different outfits they bring. Bulky hairdryers and curlers or straighteners. Hair products to straighten, curl, twist, flattened or spike up. Extention wires to make the one socket in their hotel room, turned into a mini salon. No Kidding…..
But for me. I have to take more time to plan my journeys. Other than the paperwork I have to bring, I have to also bring all my medication that will cater for all skin eventualities. At home everything is in order and at arm’s reach. But on the road I love to travel as light as I can. This at times cab prove to be a challenge. So I would first put medication that is in bulky bottles into smaller bottles. When choosing smaller bottles or how many small bottles to bring, I have to figure out how long I will be away from home? Is there a possibility I will need more then I’m bringing? Will there be a pharmacy nearby just in case I run out? But I’ll only know that till I get to the place. I really struggle trying to asses the amount to bring. if I over estimate that’s fine but I’ll be lugging around a very heavy bag. If I underestimate then and especially if there is no pharmacy in the area then I’m in trouble.
Then I bring my own personal first aid kit. It has all the usual stuff any first aid kits have, but mine has extra to cater for my skin. I have boxes of anti-histamines, scissors, different size gauze, pins, bandages etc etc to deal with maybe weeping skin, or painful skin. Then the creams, steriod creams, moisturises, antibacterial cream etc etc etc. Then the pills.
Once that is done and neatly tucked away in the bag, I take a look at my clothes. I usually bring extra t-shirts so I can change them twice a day. Or if I’m shooting, sometimes I have wardrobe to take care of it. But sometimes the material is not suitable and I have to change quickly after shoot/wrap to something that soothes the skin. I choose clothes depending on whether I am on TV or teaching.
Shoes is also another headache. I have to asses before I pack. DO I have weeping skin or are the skin on my feet getting better. If they I don’t need to expose the feet because its weeping or just feeling a bit off. (you know the drill) I wear shoes and socks to cover my feet. The state of my feet will also determine how high my heels need to be. Because if its too high it could break my vesicles. Water will ooze out and I’ll feel that I’m walking on a wet floor. If they feel fine then I can have a choice on what to bring.
Gosh I feel tired aready.
ItChY
August 13, 2007
First day of my Holiday.
Two weeks ago I was took a flight to London. I was taking a short holiday with my parents and my younger brother. They went to London first because I had a few thing do finish up before I joined them.
Anyway the story is like this. My skin was starting to dry up but there were still patches every where. On the plane, the air is very dry. Too dry for my skin. The 12 hour flight from Malaysia to London became the most painful. I had to get up every two hours to put cream on my body. And with every application it stung like hell. You would think that after the first application things would get better. No it got worse.
By the time I arrived in London and hit the cold morning air did my skin calm down. The temperature that morning was a cool 10 celcius and by the time I met my parents it was about 20 celcius.
By the time the afternoon came it became raging mad again. I had eczema all over my back, side of my torso and my front. It was so bad that I was not able to wear my bra because it hurt.
I went out to Woolwich the nearest town centre were I made home for 10 days. I had complained to my parents that it was painful wearing my bra. My brother said to me than don’t wear a bra then. What to the town centre I said? He said yes! No body would notice anyway. So ok I did just that. I walked around with out a bra on. But I had a thick t-shirt so that if the cool wind blow…. well… you know. 🙂
Anyway before I went out, I took a shower and applied protopic. I found when you apply protopic to these areas it stings. Yes it stings. At first when I read that it will sting on the internet I thought it would sting for a while then subside. But it doesn’t. The sting feels like the sensation the burning sensation you feel on your skin after you burnt yourself on a hot kettle. OUCH!!!
That sensation lasts for a few minutes. This one lasts quite a while. A long while! Then coupled with the London hot summer heat the sensation come to the point where you are aggitated. I had to buy ice packs to cool it down. That was the only thing that worked.
After that the temperature started to cool down coupled with good sleep. So my skin got better.
Cooler weather suits me fabulously. I think it is like have ice packs all round so the skin is cooled so the skin does not feel so red and angry from the heat.
Other than that I had a fabulous holiday darling 🙂
ItChY
July 20, 2007
You are not Alone.
This is for those who have written to me and said ‘I’m happy to know that I’m not the only one’.
An excerp form ISOLATE – International Study Of Life With Atopic Eczema.
Inspiration for this photographic essay came from the International Study of Life with ATopic Eczema (ISOLATE), revealing the extent of the emotional suffering caused by eczema.
A large-scale study, ISOLATE assessed the impact of Atopic dermatitis (AD), also known as eczema, on the lives of those living with it and how patients and caregivers manage the condition.
The global study was comprised of interviews with 2,002 patients from eight countries over the age of 13, and caregivers of children between the ages of 2-13, with moderate to severe eczema. The questions were developed by national patient associations and physicians from countries included in the study.
The study was supported by an unrestricted educational grant from Novartis Pharma AG.
Study Results
On average, 55% of patients are either always or sometimes worried about the next eczema flare and 51% are either always or sometimes unhappy/depressed
On average, 86% of patients avoid at least one type of everyday activity during a flare-up
5% of caregivers and patients feel that being able to effectively control eczema would be the single most important improvement to their or their child’s quality of life
On average, 43% of patients are fairly or very concerned about being seen in public during an eczema flare
The most commonly affected part of the body in patients during eczema flares was the face and neck regardless of age, gender or severity
On average, patients take 2.5 days off school or work per year due to eczema and a further 9% of the time their concentration is affected at school or work while in flare
74% of patients and caregivers state that their physicians have never discussed the emotional impact that eczema has had on their lives
July 18, 2007
The next morning
This entry follows on from my itchy legs entry.
The next morning I did not realise my husband left for work. I woke up thinking oh its probably 9am. When I looked at the clock it was 12pm. I got out of bed, still feeling grogy and sleepy. I made my way to the kitchen to make brunch and get on with what was left of the rest of the day. But after lunch I ended up still feeling sleepy and I had to sleep it off. My whole day was gone.
Now don’t get me wrong there are antihistamines that are not sleepy. Atarax which is the anti histamine my dermatologist gave me, is not only an anti-histamine but also an anti-depressant. It treats the anxiety caused as a result of my eczema. It is what my student doctor brother and his mates call combined therapy. (Thanks Jaxman)
One of the common side effects of Atarax is drowsiness. And I can tell you by experience that its so drowsy that I can’t drive. My day is absolutely spoilt. I can’t do anything but sleep it off. Check this website out.
Its been two days after I took atarax. And believe it or not I’m still slightly affected by it. It will ware off soon.
But lets put this in perspective. If a child took it, that child would end up not going to school or sleep in class. Either way that child would be dubbed either lazy for sleeping in class or stupid as a resulf of not going to school and missing class and trying to catch up. Especially when the teacher does not understand and play up that behaviour in class. By the teacher teaching the child and the other children that its a bad behaviour either by embarrasing them or making them as an example to the rest of the class. Can you imagine what this does to a child. I absolutely can. And it is for this reason til now that this is a very lonely disease.
As a carer of child with eczema, especially if you don’t have other carers around you, you feel like you are the only one in the world battling and managing this disease with the child. And it is hard to stay positive for yourself and for the child when you know there is no cure.
For carers there is a fantastic book writted by Dr. Jenny Titman called “Understanding Childhood Eczema” that I recommend. I have it and its fantastic. Also try this website too “www.undermyskin.com” Its a book also in pdf.file that you can read with your child. Makes me want to write a book as well. 🙂
Till the next entry here to feel good and having fabulous skin.
ItChY
July 16, 2007
Itchy legs
As I write this it’s 1.50am. I was awaken from my sleep because my thigh area are itchy. Its been itchy now for the past 5-10 days. I’ve taken steps to remedy it. It has now come to the point where I have to put steriod cream. I’ve ran out of the ointment, so now I’m on the cream, which does not help as once I put my pyjamas back on they will disappear because they are absorbed by the cloth of the pyjamas. I have to now walk around in shorts and not sit but just stand until its absorbed properly. That means I loose more sleep.
I now have dark circles under my eyes and everything else related to the lack of sleep. I’m just grateful that I do not have any TV engagements the next few day and thus I can relax. If not, I will miserable.
I just adjusted the air-conditioning to blow its cool air straight at me. That in itself is giving me much relief. I’m now able to sit on the sofa and type this. Now, at thesofa I have taken a cotton cloth and placed it in between me and the sofa so that the sofa does not get contaminated with the steriod creams. Boy, that would be hard to clean if it did.
Not only do I miss out on sleep. I miss out on sleeping in the same room with hubby. He needs his sleep too and me scratching all night won’t help his work performance the next morning. So at times like these I just quietly move out of the room and start my ritual of healing myself and going through all the things that will give me itch relief.
Right now i’m so desparate for relief that I have taken Atarax. I’ll feel sleepy soon and I know it will affect me tomorrow morning. I will not only feel and look grogy and sleepy, but people around me will be affect by it. Those who don’t know me will probably think that I’m one lazy person! Its no wonder that some people like me don’t like to go out or are embarrased with their situation and when people don’t understand they feel lonely in the world. When all it takes is a smile and a helping hand.
Atarax starting to take effect now
Night Night
ItChY
Diaries of an eczema sufferer 