Month 12 & 13 September and October 2013

Well I have been a little bit slack with the posts. I have been trying to catch up on things I have missed while I was ill. Enjoying time with the kiddies and getting away. I kind of thought by this time I would be completely healed but this monster continues to hinder part of my life still. I guess when you become chronically ill you sit back and realise the important things in your life and take hold of it more when your well again.

So for the last few months, I have had minor flares on my arms, behind the knees and inner thighs. The itchiness of the thighs have been toning down a bit but are still a pain in the butt in the mornings. I feel I can say I have good days and bad days. The mornings I still find I'm dry and stiff when I get out of bed. By the afternoon my legs still seem to swell and ache. If I sit too long they clamp up and I have shooting pain in my legs. So lying in bed or on the couch after the kiddies is my thing at the moment.

On the weight side I'm at a very healthy weight still.

With my little flares I am thinking it was more related to food I am not supposed to eat rather than TSW. I would have clear skin and if I ate something I would itch up over night but would be gone within three days of not eating my naughty treats.

Sleep wise is still up and down. I find if I go to sleep later at night and can get through without waking till the morning. But if I'd go to bed early say around 9-930, I will wake between 1-3 am with the itchy thighs. It generally takes me hours to go back to sleep if this happens. So frustrating.

On very happy note. When I head away, I am not so obsessed with what creams  & oils I am packing as I now know I will cope fine. I am on my way to Sydney for a little getaway with my daughter and mum soon which I am so excited about. It's my first holiday since starting TSW. Then hoping to go to Queensland for some much needed sun and salt water.

Oh and last weekend I went to my daughters school fete. It was 33 degrees. I was so nervous about wearing sun screen so I didn't. To my surprise, I came back looking very tanned on my arms and legs. Usually I always go red and very blotchy. I have been told that the steroid creams enhance burning of the skin. So now I'm not using them, my skin is back to normal when it comes to sun exposive...hooorrrraaayyy

Below are some photo's of my little flares. Nothing too hard to cope with except for the annoyance of the itch. This first one is the back of the knees. You can see that it's not that bad but I do have the scratch lines that just won't go.

The next one is my inner arm. Again the lines that won't budge and a little red and itchy. But nothing like I was months ago. So pretty happy :) As I'm writing this, I don't have the red itchy arms. We will see how tomorrow goes.

My face today, pretty clear. I have lines on my forehead still that won't budge also. Bugger bugger bugger. 

Here with my baby girl. She so happy I am up and about again. Dam that doctor, I lost so much precious time with my babies. 2014 will be a fantastic year for catching up and making the most of everything and being thankful that I am healthy and steroid free :)

 Cheers until next month xoxox

Month 11 August 2013

I can't believe I'm almost 12 months off steroids. Again although I may look pretty good compared to the first 6 months, I'm still waiting for the 100% healed celebration. I have been a bit naughty with the food this month and I have cheated my clean eating. My downfall from that red itchy skin in places like behind my knees, inner arms and face. So I'm in heaven munching on a chocolate frog but the day after itch, itch, itch. I've done that a few times to see if it's actually TSW or my food allergies. And yes food allergies it is. The side effects of withdrawing are still hanging around which are, swelling in the legs, itchy inner thighs and a bit of tight skin in the mornings and afternoon which I still find painful.

I thought I'd add some more pictures of my withdrawal this month to give you more of an idea what you will go through to get to the stage of steroid cream free living. And to also have a recap for myself as sometimes I need to look at myself how bad I was and to appreciate how I am now more.

But first here's a really good picture of me and my little man before the long coarse of steroids. Perfect clear skin. It wasn't long after this I stopped breast feeding and the first rash appear on my hand which prompted me to the doctors. Wish I could turn back time.

The following are a few before I went through the withdrawal. I didn't know what was wrong except each morning I wake up with a spreading itchy rash that just got worse and worse. The addiction was taking place and nothing was working any more. I was always covered in bruises too. I now know that steroids make you bruise very easily.

The next lot of pictures are stages from month one to current of the withdrawal. It was the hardest thing I have ever gone through. It certainly beat giving birth to two children, that was easy compared to this. Thank you doctors for taking away precious time from my life. I feel that I have around another 6 months to go before I'm completely healed but I can say it will be worth every inch of pain and suffering that I have gone through just to get my body healthy and working again normally. 

A very good example of the elephant skin everyone talks about whilst in TSW. Yes this is completely uncomfortable and challenging to walk!

 The swelling you can get is pretty intense. Some mornings I could barely open my eyes. My eye brows here you can see have fallen out. Looking very very pretty :)

My hand print on my leg to show you how red and burning the skin gets. Very very painful. I could describe it as being burnt by a fire. It blistered as well on some parts of my body. All this from stopping the use of steroid creams. And doctors say it safe! Yeah right..

 Check out the swelling around my neck. Elephant skin there also. At this time of my withdrawal I could turn my head to the left or right or up and down. Too much swelling and  skin to move it.

My tomato belly..red red and burning like mad..

 Turning a little white and turning a corner..

Almost no eye brows below but girls they do grow back and they grew back pretty fast compares to the hair on my head.

The famous red sleeve of fire. Always stops at the hand. A strange side effect of withdrawing. I never got anything on the palms of my hands..

One thing everyone mentioned whilst going through TSW. The white of my eyes were pure sparkling white and still are today.The eyes are the windows of health. They were never this white. They look like I have put some of those eye drops in them..Check them out below.

The good old purple legs. Mine looked like they were going to drop off. Its actually the blood vessels trying to work again after so much steroid cream applications. It constricts the blood vessels when the steroid cream is on your skin. End result when you stop using it is this below. And it extremely painful.

My belly below is how it looks today. I still have some scarring which looks like a c-section scare but its slowing fading. Constant scratching caused this.

So I have so many more pictures but I think the above gives you more of an idea of what happens. It's not for the faint hearted but if you're about to go through the withdrawal, this can give you an idea of what might happen. Everyone is different so not all the same things can happen. They can be more severe or less than mine. Hugs xooxo

This is me today at 11 months xoxox

 And to finish off this month, here's an excellent video of Dr M Rappaport discussing TSW and the causes. It explains everything you need to know and he's cured thousands of patients in the US of TS poisoning. My belly makes an appearance at the end of the video. It's worth a watch...

http://vimeo.com/68189383

Month 10 July 2013

Cruising along in month 10, I'm finding myself getting better every day. Energy levels are still up and down but looking after two young children can do that anyway. I'm still feeling self-conscious about my hair, so my new g-star cap is my best friend lately. Although friends say my hair looks good, I know its terribly thin and lifeless looking. BUT it is growing back. I haven't really go much to report this month but things for are going along well. Some mornings I still struggle to get up with the swollen legs and semi tight skin. The itch just won't go away between the legs. Doesn't sound like much but 10 months of it is nearly sending me to the looney tune bin. My skin doesn't feel real either. To touch feels almost numb and when a squeeze it, it looks like it has no elasticity. I have been told it should go back to normal. Fingers crossed big time.

I just love the above poster someone posted on facebook. It makes so much sense and makes me so angry because I was one of those customers. I'm at the point now I don't take anything. Not even antihistamine. This is a first in many many years. Feeling pretty good about it too. I know medications help alot of people but when you have gone through what I've been through, you stop and think what does this actually do to you? Like really do to you.

Yeap!! Above is about a few weeks worth of steroid creams I was using on my whole body. Now if I was as savvy as I am now. What the hell was I thinking, why didn't I clue into it. Its a drug, of coarse my body was going to become addicted to it. The less it worked the higher the strength the doctor would give me. At one point when my face started to react, I was using Elidel and Advantan at the same time as directed by the doctor and to top it off a high strength dose of steroid tablets. I remember one day during that, my heart was pounding so fast and hard , I thought this is it "heart attack". I rang the doctor and he said "oh just lower the dose and you'll be fine!"

And here's the trusty hat..love it xoxox

Month 9 June 2013

The Itch Continues

Month 9 arrived and I was waiting for the big rebound and fortunately for me it never arrived. The itch on the other hand has been persistent in some areas. The inner thighs are still pretty annoying especially around 430pm and first thing in the morning. I find that instead of turning red the hives appear instantly if I scratch. Looking at my weight this month, well Im a healthy 61kg. At my lowest I was 57kgs and looking pretty awful and sickly looking. I'II never forget when I was chatting to my hairdresser, back when I chopped my hair short. She thought I'd been having chemo, I looked so skinny and sick looking...Hair on my head is now definately growing back as I can see the flying hair around my face standing up when its pulled back in a pony tail.

LICHENIFICATION is  very common word for anyone going through TSW and its one thing that constantly puts the fear into me along with the extra skin also known as elephant skin. Mine seems to be getting better every day but some days I just want to rip it off and hope for the best. Below are some photos to give you an idea of what I'm looking like now and what lichenification can look like. It can come in many forms. I'm finding now the less I bath and itch it is getting better.

The above picture is my left knee, the result of constant scratching. It is fading but slowly. I have this on my belly, ankles, knees and thighs. 

The above is the back of my ankles where I nearly scratched my ankles off! They seemed to be really itchy at the time and I think the last to heal up. Deep lines again. 

My left elbow and some elephant skin still being persistent. Unattractive YES!! I want my normal skin to return so bad...

The above is my inside inner arm. Still some loose elephant skin. Ewwwwwww.

Back of my knees are still swollen and have a little bit of elephant skin to go.

For me, I have found (and I am not sure if I have mentioned this or not) but the less baths I have the better my skin feels and the lines seem to be getting better. I am down to one bath a week now which is a real milestone, considering I was bathing a horrific 4-5 times a day. I have a moisturising shower wash I use and have a quick shower in the morning and I am even washing my own hair too without irritation. My mum was washing my hair in the sink or bath maybe one every ten days as it hurt so bad during the worst times of TSW.

Sleep now, I am getting through the night 'most' nights. On occasions my inner thighs sweat and I itch with hives. In the mornings when I wake, again my inner thighs itch and appear with hives (annoying!!) Nothing is red though and that makes me very happy :)

I hope my photos help with explaining my journey. Its not a great one but enduring and has made me appreciate life in general alot more. I feel for people who are about to start this hellish journey but all I can say is to stay strong and you'll get through and will end up more healthier than you ever have been :) hugs xo