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.

2.5 months into TSW

Here I am at 2.5 months in. Time is just slowly ticking by now and each week brings something new. I am picking up on the viscous cycles that this withdrawal is going through as I have been fooled a few times into thinking it's greatly improving only for a bad flare to hit my body again.

In the last two weeks I have definitely been in a flared up stage again. The dry and flakiness of my skin has increased a lot and my ankles are terribly swollen and weeping. My hands are still very bad and the healing is slow. 

I do have so much to be thankful for though, my face is good at the moment compared to the past few months. I feel like I can go out confidently when I'm wearing loose covered clothing. It almost feels normal for a moment until I catch a glimpse of my wrist or see how red my neck is in a mirror. 

There are people on this same journey who have symptoms far worse so I'm grateful and thankful with how my body is coping and I'm doing all I can to help it recover. 

I saw the naturopath again this week and did a skin sensitivities test. I tested high for - 

Wheat 

Gluten 

Rice 

Rye

Durum wheat

Yeast

Almonds 

Cows milk 

So I have had to ditch all the almond meal and flour that I have been using and have been sticking closely just to the foods I can have. 

Other symptoms that are plaguing me right now are the itch, oh my gosh the itch! Insomnia at nights when I am beyond tired and just so angry I cannot sleep and fatigue in the days. Obviously this is from bad nightly sleeps but it's a whole new level and I'm certain has to do with what I'm going through as well. 

Here are some images of my skin today -

10 weeks into Topical Steroid Withdrawal

Can't believe I have made it this far. In the first few weeks I wasn't sure how I was going to get through it and I dreamed of being further into my healing journey. Well here we are and the worst has certainly passed. The first six weeks were terrible but then I started to see slight improvements and each week I now seem to be getting a little better. 

I have been able to go out a lot more now as my face a neck has calmed down considerably and I also just have a new attitude about the whole thing. I just want to embrace each day and even though some days my face is still terrible and people ask me what's wrong I have a new found confidence as I know I'm on the road to recovery now. 

The worst parts of my body now are my hands and my ankles. My hands are always getting wet and splitting so it's taking its toll on them healing. My ankles are very swollen and red and split. It's still spring time so the weather is cool and refreshing. It's been the best weather to go through this and I'm praying as it heats up that I see more improvement as it's hard to dress head to toe in stifling Queensland heat. 

The other major factor that is slowing down my recovery is lack of sleep due to insomnia and breastfeeding my baby. 

Every night even though I'm so tired and dream of sleeping I lay awake for hours on end my skin on fire and SO ITCHY. It drives me totally mad and I cover myself in ice packs trying to numb the nerves. It works for a while but sleep still doesn't come. I would say I'm averaging 4-5 hours of sleep a night at the moment in between feeding Bub and laying awake with my skin issues. 

I have been able to slow down on the bathing (the water bill is happy about that!). I have gone from two baths for an hour or two each day to around one a week. This is a definite sign of improvement as I am no longer waking up totally unable to move and having to soak in an oil bath. I still shower morning and night and douse myself in oil and sit around while it dries. With the kiddies this proves very difficult and I can't wait to cut back on the showers and the oil. 

Oily and covered in kiddies 

I also had some test results come back from the naturopath which showed that I have Pyrolle disorder which is an inability to retain zinc and B6 which are both very crucial to skin health. There is no easy fix so I have just been doing all I can such as - 

Getting heaps of sun each day

Eating very healthy - paleo diet

Drinking loads of water 

Taking good supplements and probiotics 

Trying to stress less and enjoy each day more 

Going to bed early and trying the best I can to sleep

Going swimming in salt water 

Bathing in apple cider vinegar and oil 

Remaining positive and trusting God that a better day is in store 

The biggest breakthrough for me recently was feeling confident enough to go swimming at the beach in a bikini with my friends around. I haven't worn a bikini in years, let alone whilst going through this whole skin adventure. 

Well I just thought what the heck is the worst that can happen and did it. I have lost a ton of weight from the diet so at least I was feeling more positive about my body size. The kids loved me swimming with them and my skin loved the effects of the salt water after the excruciating stinging had worn off. I've now been swimming a few more times and will keep it up this summer. 

Here is a little look at my skin this past month. 

Getting nowhere with doctors

The past few weeks I have been feeling a little better and up to venturing to the doctors. Before that going out at all has been horrible so I didn't get around to going to see the doctor until this past fortnight. 

I saw my regular GP and she ran some tests. Turns out my histamine levels are extremely high - 13,300 instead of the regular 0-100. No wonder my skin has been insanely bad! 

So I left that appointment feeling incredibly confused and a bit angry at myself as I have been eating a strict paleo diet and parts of the diet - bone broth, sauerkraut, and kefir which I was eating daily, are all very high in histamines. Therefore i have been making this steroid withdrawal period even worse by the foods I have been eating. 

But now I know so at least I can move forward from here with a more informed approach. 

I then went to see an Immunotherapist and after a long appointment i left with no answers and three scripts for oral steroids and steroid creams and antibiotics! He did not take on board at all what I said about reacting to the steroid medication and that even the strong steroids had lost their effect. 

So I left pretty discouraged and confused once again and have chosen to not fill any of those scripts for anything he prescribed. 

Next up I have seen a Naturopath and this was a little more promising and hexy! I know that a more natural approach of internal healing is the way to go so I tracked down a Naturopath that sounded well qualified and went to see her. She was a little shocked at the state of my skin which never makes me feel good. I wish I could find someone who specialises in eczema! She attempted to do a food allergy test by pricking my fingers but my blood kept clotting so the test was unsuccessful which was a real shame as it tests for 48 foods and tells you how allergic you are to them. That would be amazing to know! 

She talked me through my diet and a stack of nutrients and supplements I should be taking so I now have a fridge stocked full of them and an empty bank account. I have to go back and see her in a month so I'll give it a go and see how this coming month pans out. 

What a journey!

Next up I'm having a cat scan to investigate the swollen lymph nodes in my groin and armpits. 

My skin right now is super inflamed on my hands and wrists and the backs of my knees. I put on a skirt today that had some dust of it so it felt like I was going to tear my legs to pieces they reacted so badly. My neck and face have gone down a lot which is great as I feel much more confident to go out. 

My feet and hands are still swollen and I am still incredibly cold! I went to the beach today in pants and a long sleeve top and sat in the full sun for hours and still couldn't get warm! Such a strange feeling. 

I have now lost almost 10kg in the past few months and now weigh 56kg. I feel like I am going to keep losing it as I feel so restricted in what I can eat. It's funny how I always wanted to lose weight and now I am and I'm not sure I actually love it that much as I really don't want to be just skin and bones. I am going to make the most of it though and start getting into more Pilates so I can tone my body more. 

Just trying to find the positives in every day and everything that comes my way. 

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 -

Thankful for

It's so easy to become overwhelmed going through this so I wanted to remind myself of all the amazing things I have to be thankful for right now in the midst of what feels like a really hard stage -

I'm thankful for -

The fact that I have hope that God will heal me and not allow me to go through anything I don't have the strength to conquer. 

I'm so thankful for my husband who is a constant support for me. He is so loving and never sees my skin but just encourages and compliments me. For that I am beyond grateful. 

My family are incredibly supportive and always there when I need them. My mum is so beautiful, loving and giving of herself and my dad just the same. I'm very thankful they are both in my life today and that they are so supportive. 

My sister is a constant rock for me. I'm thankful for the opportunity I have that she can live with our family as we get quality time together and she is such a help with the kids and always aware when I'm struggling and need extra support. 

I'm thankful for my friends who are always there for me and love me just as I am. The friends I don't feel I need to hide from and can spend time with no matter how I'm feeling or looking. 

I'm thankful for an amazing church that we are a part of and the community and richness that it adds to our lives. 

I'm so thankful for the money we have to eat organic and buy healthy products and that we live in a place that gives us so much choice and variety for healthy living. 

I'm so thankful that we live in such a beautiful part of the world and that the sun shines almost every day and the beachfront is only minutes down the road. 

I'm so thankful I can stay home and raise my little ones and pursue my own business ventures from home. 

I'm so thankful that I have the opportunity to be a mother and to sow into the lives of my three beautiful children.

I'm so very thankful that I have the determination to do this because deep down I know this is the answer and I know that the pain will pay of and the result will be very worth it. 

Anxiety

Feeling so overwhelmed with it all today. It's a vicious cycle and every time there seems a glimpse of hope things are improving it seems to get much worse again.

We have an amazing life and lots of friends but I feel so withdrawn from it all and when I try and get involved I get so anxious and end up leaving. It's happened a few times in the last few days. The anxiety when I'm with a group just builds and builds, my heart races and I feel my skin heating up like its on fire. I can't seem to calm myself down so I always end up leaving the situation and taking some time out. People have no idea so I'm sure I come across rude and a bit abrupt just leaving.

Last night was a very restless night with ice packs and waking up to put on cream so I didn't feel like my skin would crack in half. I woke up so dry, my eyes swollen and feeling so uncomfortable but I really wanted to go to church as I've missed the past few weeks as I haven't been up to going. I showered and exfoliated my skin, spent ages putting and cream, doing my hair and then getting all my little ones ready. After two hours I was ready to go so I bundled everyone into the car trying to keep my cool as my skin became drier and drier and more painful.

Everyone was lovely at church but I hid away under my sunnies and long hair saying a brief hello. When the songs started I couldn't hold myself together at all, it's so raw and painful and standing in worship just brings such a flood of emotions and my anxiety just got worse and worse so I quickly walked out with bub and left.

I love people and being involved and engaged so feeling this way is so hard as it feels so unnatural to be withdrawn and not confident talking to people.

I know that a lot of this is much more in my head than is probably true. We always notice the flaws about ourselves more than how other people view is, I know I do anyway. I constantly try to feel confident and just get on with it and most of the time I can but occasionally I just. Abt hold myself together no matter how hard I try.

I'm trusting God. He is my healer and I know I'll come through this and healing will be my testimony. I hold onto the hope of that day and now in the midst of this I'll cherish each day and look for the other blessings that each day holds as they are many.

A beautiful quiet spot to sit, think and pray.

My hands are one of the driest areas of my body at the moment. My neck and top lip are the other areas that are very inflamed at the moment.

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.