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.