2.5 year update

Here I am at the 2.5 year mark since I began this detox from ongoing steroid use my whole life.
I can't believe I made it this far but the process, as excruciating as it was has been so worth it!

I am now completely eczema free for the first time in my whole life. I am not on any diet or food modification plan at all and I use no medication at all. My skin has all but completely healed itself and every 4-6 months for about the past year I have had some very minor flare ups on my face but the severity is much less and the healing much faster.

It has been so incredible to be able to dress for the weather, not to cover my body and to be able to do things that I could never do, like swimming in the summer with my kids and sleeping an entire night without scratching my skin. My life has changed so much and the only thing that has changed on this entire journey was giving up the steroids and allowing my body years to heal on it's own.

I will do a more comprehensive post at some stage but for now, I encourage anyone who is using steroids on an ongoing basis to be incredibly careful about using them long term. They completely destroyed my body and the reaction that I began to have to them after so many years of use only perpetuated my eczema and continued the vicious cycle.

I have told many doctors that I have seen and have not yet found any that seem supportive and understanding of this journey. Every doctor I have seen just prescribed a different type of steroid and never spoke to me about the long term effects.

I am so happy that I found this online Facebook group and organisation, ITSAN. Being able to do this journey alongside others all over the world has been amazing and the support was what helped me to keep going through the darkest months.

Here is a picture of me from the past few months with my mum and my daughter. No eczema, swimmers, pain free and so much freedom after 30 years of severe eczema from head to toe.
I use to go for a swim in the ocean and sit on the beach for half an hour afterwards, crying in agony as the salt water burned and stung every inch of my body. I can now swim without any pain or discomfort at all which is amazing!

Thanks to my amazing mumma also who walked alongside me my whole life during this journey and did so much to work out how to help me heal from this. We made it! xx

4.5 months into TSW

I'm here at the 4.5 month mark. I didn't think i would make it this far, it seemed like such a long time when i had just started out. This is a very tough journey, I have certainly healed a lot from the first two months but there is much more to go. I can now function much more normally and this makes it so much easier with the children.
I am still covered in this strange split, broken and red inflamed skin. The past month my ankles have taken a battering and have been so extremely bad. They are swollen, red, weeping and very dry. It's crazy just passing each day and not actually doing anything to my skin to bring healing. I can only bath in certain things and put some zinc cream on sometimes that seems to help a bit. I have tried going to the pool to see if the chlorine helps and also to the beach so the salt water can kill the infection. My ankles were so bad they began throbbing so i went to a doctor recently and she was a little shocked at their state so i have been on antibiotics for the past 10 days. I have now stopped and they seem as bad as they were before i started the course of them. I have just been applying zinc and bandaging them so hopefully that helps.

My face has been pretty good lately with only a little bit on my lip and chin area but  can wear light makeup which has been so great as i feel so much more confident when i can show my face. My neck is healing well also and just gets red and itchy occasionally but i don't have to wear scarfs to cover it so that's an improvement.

I have been feeling so extremely tired so had some bloods done and my iron level is very low so i have started on iron and vitamin c which has been making a huge difference.

My hands have been healin up well and are mostly just cracked around my knuckle area now but the red sleeve look seems to have subsided a bit.

The worst is the itch! Oh my gosh the itch, it brings me to tears often, gets me out of bed multiple times a night, terrorises me constantly. It is the worst feeling ever and I often find myself in the midst of tearing my skin apart praying desperately for the itch to stop. It is so consuming and the only relief is scratching my skin. I know its a terrible cycle and once started its very hard to stop. I am sure healing would be much faster if the itch was not there.

Lord please bring healing swiftly from this horrible addiction that i plaguing my body. I just can't do it anymore but there is no way out but forward drug free. I will continue as i know that this is the answer but far out it's tough.

I have been trying to stick to my crazy diet of no wheat, dairy, yeast, almonds, grains, cows milk and more. It's hard to say the least as it is very restrictive and not being able to munch on a cracker or piece of bread is actually really tough. I have lost so much weight, 15 kg now as there is just so little food to snack on unless i do a big cook up which is time consuming with the kids. Im down to 52kg now which is the lightest i have been since i was an early teenager.

Christmas is here and so is the heat. I am praying for some reprieve and that this would be an enjoyable season.

Day 31 of steroid withdrawal. One month milestone!

So I have made it to the one month mark of this horrible journey. Last week I felt that things were improving, my face went down and my legs were great. In the last three days however my skin has flared again with a vengeance and it's been so painful. My face is swollen and my skin is like leather. It's so incredibly tight and my skin is cracking and just weeping because there is no elasticity at all in my skin - especially my hands and neck. 

I have gone out a handful of times and regretted it very soon after. My skin reacts badly to being out and seems to dry out and crack faster than when I'm inside at home. 

My whole body feels hot and wet all over but is also dry and cracked. It's the most disgusting feeling and I just can't escape it. My hands have been the worst and the skin feels so incredibly thin and fragile. 

Every time I put on cream now of any kind it burns and actually has the reverse affect and makes my skin drier. 

I'm feeling like I'm going nowhere with all this right now. Feels like there is no improvement or cycle in play that I can see to guage where I'm at. 

I went to the doctor last week and she has no idea what to do but told me to just take Panadol and use sorbolene cream! She also said she could just give me more steroids if I wanted as she didn't think people could have bad reactions to them after prolonged use but thought maybe it was possible. 

I'm now on the hunt for a good naturopath to help with my diet and internal healing. 

A new week is here and I pray more than anything it brings with it some relief. A beautiful friend bought me a voucher to a  Himalayan salt spa that is meant to be amazing for skin conditions so I'll be trying that out soon. 

I'm trying to stay positive and get on with my days but I'm just feeling very defeated, flat and emotional at the moment. I know one day it will improve but right now it's certainly no easy journey. Ori has been amazing, no idea how I would do this without him and his constant encouragement and silly jokes. 

Day 20 of topical steroid withdrawal

Day 19 steroid withdrawal

Today has been one of the more painful days. My skin has stopped flaking but is now extremely red and feels like I have been severely sunburnt. It feels very hot and is the most severe on my wrists and neck.

I also noticed today that my hair is falling out around my forehead hairline area and my eyebrows are thinning. My hair is limp and has so much oil in it from the creams I have been using that I can't wear it out at all.

I still can't believe that all I have done is stop the steroid creams and this has been the rebound reaction that immediately occurred the day after I stopped using them. I feel so frustrated that I have been taking and using steroids for so long because now I feel totally broken as if my body is falling apart slowly.

Symptoms today -

• Extreme tiredness 
• Cannot get warm no matter how many layers I'm in or sitting in the full sun 
• Red raw skin 
• Only my soles and palms are unaffected by the red hot rash 
• My hair and eyebrows are thinning 
• My lymph nodes in my groin are large and swollen 
• I get flashes of pain through my body which I have read is nerve pain 
• My body won't retain moisturiser and I need to keep applying it every few hours so I can move my arms / leg / neck without the skin cracking 
• I feel very emotional and mentally weak 

My prayer more than anything is for a swift withdrawal stage as I have no idea how I am going to do this for months and months and look after my kids, husband and home and have any kind of life.

One day at a time.

Day 17 Steroid Withdrawal

This withdrawal period is relentless. Every time there is a little glimpse of things improving it seems to flare right up again and is worse than before.

Yesterday the swelling had gone down a lot and my skin was just very very dry so I exfoliated in the morning shower and applied a ton of cream. My skin must of been more sensitive than i realised as it became so painful and raw as the day progressed and the flashes of nerve pain continued all day. I have also been freezing cold and rugged up all day even though it's very warm, I just cant seem to warm up at all. I am beyond tired even though I am getting enough sleep at night and eating really well so it must be another side affect of this whole process.

Today I decided that I would no longer exfoliate at all but just use a soft face washer to wash in the shower and help my skin heal itself and produce natural oils a little more. I got dressed and put on a top I thought would be ok (dust free) but no it reacted within minutes and I was tearing my skin apart in so much pain. Dust on clothes is the absolute worst. So now my skin is feeling very raw and red and fiery. I am just trying to have a quiet home day and sit and play with the kids and rest as much as I can.

There is so much that I want to do - with my business, home, family and friends but I just feel like I need to lay low and tackle this and get as much rest and sleep at night as possible.

I am still eating really well and drinking bone broth each day, eating sauerkraut, carrots and kefir and hoping that my gut is slowly healing itself.

This was my skin this morning -

Day 13 of steroid withdrawal

Today my skin has been so incredibly dry once again and weeping a lot.
My top lip and the area between my eyebrows and top of nose is wet and raw and has been very painful all day. My legs are very dry and there is a rash across my thighs and top of my legs that is very itchy. My hands are very dry and I have to keep applying ointment so keep them moisturised as they get so wet and dry out all day.
The lymph nodes in my groin are very swollen which is a sign of the stress this is having on my immune system but each day I am seeing little improvements so keeping positive and staying healthy.

Day 12 of steroid withdrawal

Today I headed out to the rock pools with my kids and a few friends as I was feeling pretty good and the sun was out so I wanted to make the most of it after being stuck at home for so long. As I was leaving my neck became really red and irritated from running around getting everyone ready and it began to weep and split again. My hands are extremely dry and cracked in many places so I have lathered on the cream numerous time today so I can actually bend them.

After a few hours outside in the sun I was very ready to head home as my skin felt very inflamed, red, dry and itchy. My neck was still weeping and my hands burning as they were so dried out.

Here we are enjoying a fun hangout at the rockpools. I tried to cover up as much as I could without dressing too warm. 

Day 10 of steroid withdrawal

Today things are definitely improving which is so encouraging to see. The swelling has gone down and not the dryness of my skin has increased dramatically.
My arms and hands are the most painful and dry which makes many household tasks painful as I am always having to get my hands wet to wash up, wash the kids and and clean up.
The back of my knees is very red and inflamed and there is a rash all over my stomach and legs but that has subsided a little since yesterday.

I went for a walk along the beach today to get some sunshine which always seems to help with the itchiness. When it's a little warmer I might find a nice quiet spot and brave a swim in the ocean as the sea water, even though it is so painful and stings like crazy, always seems to reduce the inflammation and improve things.

My goals for this summer are to wear clothing that doesn't have to cover my whole body and to be able to exercise again! I love running and going to the gym but the sweat aggravates my skin so badly it's been years since I have done either.

I feel really confident that I'm onto something that is going to work and if I can see small improvements each day it gives me hope that i'll get there soon enough.

I am eating really well so that I can heal my gut and speed up the process of healing my skin. I'm eating a full organic fruit, veg and meat diet and am not eating any wheat, dairy, sugar or grains. Sounds like there would be nothing left to eat but i've been so surprised by the variety of foods I have been able to make. I never thought I would be drinking bone broth every day that's for sure!

Here are some pics of my skin today -

Day 6 steroid withdrawal

Last night my little bubba slept all night long and didn't wake until 5.30am so I felt amazing and super rested today which was so great! My eyes were not too swollen but my neck was very raw and dry. I kept using lots of ice packs and laying in the bath with a few different things added to help the dryness and inflammation.

This is how my neck was when I woke up 

Not sure how I would do any of this without my super supportive husband. He has been amazing and is so encouraging and helpful with the kids when he is home. Makes a world of difference having support at a time like this, especially with the kids. 

Day 5 of steroid withdrawal

Today was another crazy day. I'm not quite sure what I'm in for each day so just taking it a day at a time. Woke up about 2am last night and my eyes were swollen almost completely shut. By 4am my skin was so painful and dry that I ran a bath with apple cider vinegar and olive oil and laid in that for an hour until the kiddies got up. 

I ventured to the shops in the afternoon as I really needed some time out of the house. I was all covered up in a big scarf, long loose clothes and sunnies but I still get so anxious about what people think that I was very happy to get home again. 

My skin seems pretty much the same today and it worse than yesterday. I'm praying for the day soon that the healing starts to show and the fiery skin subsides.

Symptoms today- 

Very swollen eyes when I woke up

Puffy body, especially hands. Needed to remove rings due to swelling

Severe dryness and itchiness 

Rash developed all over my stomach and back and legs

Flashes of nerve pain through my body all day 

Cracked eye lid creases 

Liquid sitting beneath my skin and weeping if bumped or scratched 

Hot fiery face and neck

Freezing cold spells throughout the day even though it was warm

Day 4 steroid withdrawal

Today has not been a good day. My skin started to flare up badly last night and weep around my neck and ears. I went to bed with ice packs on and woke up today with very swollen eyes and my skin has continued to get more inflamed and itchy throughout the day. My face and neck feels like it's on fire.

Today I have been at home all day with my three children. The biggest challenge is being a great mum to them when I am feeling like this. I feel so impatient and in pain and just need space as my skin is so painful but with three little ones getting space is never an option. My darling little bubba just wants to snuggle in and nurse and stroke my chest which hurts so much. I have found that my milk is drying up the past two days as well. It's come out of no where as I had a great supply and was breastfeeding her really well. It's just dropped off very suddenly and I am sure it must be to do with the steroids and how I am feeling at the moment.

I made this video in the morning, my skin was not very red but very painful and dry.
By the afternoon my skin was far more inflamed as you can see in the images below.