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.

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