Totally forgot about this little milestone today. Keep fighting and kicking its butt.

A few set backs with needing prednisolone inbetween for asthma but never thought I would be able to do this.

I’ve kept a tube of steroid cream in my drawer for the just incase moments but they have NEVER came.. I’ve been determined to kick this addiction since finding out I had it… sometimes I look at the other pictures of people covered from head to toe with symptoms and it breaks my heart. I’ve been lucky my cream was a low class and my tsw symptoms have only been where I’ve used the creams. However its still an addiction that I’ve got and I’m terrified that now I’m off the prednisone my eyes are gonna wrinkle up and scab over again.

I’ve loved my skin whilst being on the steroids but they’re nasty nasty tablets that have made my mental health take a nose dive. I spent 3 hours on christmas day sobbing and know this was a part of the steroids but also a party of shitty friends who dont give a shit and drop me in it at the drop of a hat. So now I’m off them we shall see what happens.

I’m thankful for this community we have because our doctors and derms have let us down big time. To think they have put us in this situation but then dont wanna acknowledge it is soooooo frustrating. I’m now happy I have a lovely dermatologist, however she still prescribed me protopic but I’m going to educate her in the new year with some solid information about tsw so hopefully I can talk to her as shes lovely unlike the other one who was pretty awful.

So at 38 weeks I’m thankful for the strong person I’ve become. I’m making new plans for 2020 as have felt lonely lately and I dont want to feel that anymore.
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#tsw #topicalsteroidwithdrawal #topicalsteroidcream #topicalsteroidaddiction #topicalsteroids #redskinsyndromeawareness #redskinwarrior #redskinsyndrome #thisisnoteczema #sensitiveskin #skinproblems #healingfromwithin #itsan #loveyourself #skinjourney #itchy #healing #topicalsteroidawareness #thisisnteczema #togetherweheal #preventable #hydrocortisone #eczema #betnovate #dryskin

A quick vlog about steroids and asthma. Please dont put your life on the line. You cant fight tsw If you cant breathe.

WHAT A RIDE

So, December marks 8 months topical steroid free.

It’s not been easy. I’ve been plagued with viruses and ill health, however think these have been.passed on by others but still been awful as my immune system has been weakened.

I’ve had 3 blissful months in the summer where I was totally free of symptoms of TSW. I thought I was healed but no…. I’ve questioned and wondered about everything that could of helped clear it up. My asthma inhalers, montelukast for my asthma but or even summer sun as blue light is amazing for skin. Well for mine it is.

Diet

I’ve tried all types of diet stuff including non dairy and gluten.. these foods defo trigger my skin and dairy is worst now so I dont have it. I’ve also found out that the more purer the milk the worse the reaction.

I’ve also found out about the itchy dozenfor foods… I was dieting after the summer and my lips wouldnt stop itching. It was non stop and had me so down in the dumps. Someone on an eczema forum told me to google the itchy dozen…. oh my god I had my eyes opened… on that list was all the things I was eating on my diet, brocolli and eggs were top. They contain something called salicylates, which is penicillin I think or something similar and this can cause eczema to flare and itch. Within days of cutting them out my itch disappeared

I’ve since bought the eczema detox diet book by Karen Fischer, which I’ve found so helpful. It’s like my bible.

CBD oil

I’ve tried CBD OIL from a company called karma coastwho are based in Tynemouth, north shields. They also have a website.. I’ve done alot of research on this and shes amazing. It’s the real deal but I’m unsure if its been helping with my skin. I’m thinking of getting a stronger one in the new year as it did lift my mood.

Blue light

I had lots of natural blue light in the summer months including sun beds..

I’ve since bought a face light with a range of LED lights in. I’m trialling that on the blue setting.

My recommended products

I’m still using my own zinc and castor oil home made cream. I swear by it. Zinc heals cracks and is fantastic for damaged skin. I mix the non nano zinc oxide powder in with pure castor oil and lather on my mouth every night. It stings so bad when it gets in the eyes so try not to get it in or around them. You can buy it from amazon and it lasted me for nearly a year. I’ve recommended it to other people and theyve had relief from it.

I literally live in castor oil. It’s so pure and hasnt got any nasty ingredients in. I decant a small amount into a small bottle to keep in my bag.

MAKE UP AND INGREDIENTS

Be as natural as you can with make up for those of you who can use it…

We all have different skin types etc. So what works for one doesnt always work for everyone.

My personal recommendations are:

• Tropic foundation
• Bare minerals
• Benefit lip gloss

I try to cut out the following nasty ingredients:

• Petroleum (allergic to)
• Parrafins (all) (allergic)
• Bees wax (allergic)
• Lanolin and linalool (allergic)
• Potassium (makes me itch)

Parrafins and petroleum or petrolatum are irritants and at first you think they’re helping but.long term they can cause damage.

And yes looking for products is a total nightmare.

If you have any recommendations then please feel free to comment.

DEAD SEA SALT

who ever whenever thought that salt would help sore skin. The very thought of it going in a crack used to make me wince… however when I was on holiday in june I used a little sea water on my lips and wow it stung but then really eased my lips… so I did this every day several times a day and it eased it.

As soon as I got home I bought some Dead Sea salt and regularly dunk my whole head under continuously for 5 minutes…. my skin feels so soft afterwards and also eased.

I’ve heard some with full body TSW take long soaks in the bath with it.

Vitamins and supplements

What I can personally recommend.

• Milk thistle

• Collagen

• Good multi vitamin

• Calcium and vitamin D as you wont be getting calcium If you cut out dairy

• Good omega 3

• Vitamin b complex including a good dose of b6
• Probiotic

TSW plan moving forward

So far I’ve found tsw is so unpredictable. We just have to take each day as it comes and never know what we are waking up to.

I’m learning every day and its thanks to all the support groups and instagram that I’m getting the help and support I need. Not really to any doctors or dermatologists.

I used to reach for the steroid cream and all would be well. Now I’m finding out what is causing it, not masking it.

I’m a huge fan of the ROCKY HORROR PICTURE SHOW and the famous transvestite Frankenfueter famously said “so I’ll treat the cause, not the symptom!” And that my sussy wearing hero is exactly what I’m gonna do.

Below are some pics from my Instagram account from the last 8 months.

Its moved from lips to eyes mostly then back to lips and jumps between the two.

I hope you get some help from my 8 month progress report. We are all warriors… #keephealing

My Instagram handle is @tsw_gettingmysmileback if you would like to see more of my journey.

So yesterday was week 4. All week I’ve been absolutely exhausted. Unsure If this is tsw or just that I’m genuinely tired. 1.30 comes along and my eyes are burning, feel out of breath and cant keep my eyes open.

I’m so so so much better at week 4 compared to what I was in this stage February this year. At that point in Feb I even cancelled a date as didnt want to be seen out looking the way I did. Couldnt smile, couldn’t open my mouth etc.. but at the minute I’m doing good. The red skin isnt as red, I can smile and I have no cracks on my mouth. Dont get me wrong it’s not perfect and still has crusty skin around my lips, itches like mad on a night time and often wakes me up it’s so itchy. But its baby steps and this is what’s needed for topical steroid withdrawal.

After a horrendous day yesterday me and mam sat and binge watched the widow (all 8 episodes) and had a girly night. Was lush.

I’ve been to the gym today and have a date tonight so life is good.

I’m also in talks with a local radio station to highlight tsw to try to help out with the #itsnoteczema campaign. Watch this space

Thought I would share how I cover the redness up. It’s always worse when I get out of the shower and has calmed down alot since then.

I mix my #bareminerals foundation in with the castor oil that’s already on my lips. This means it doesn’t dry as much. I use this for during the day when I’m just at work or even dont use any at all depending if I’m teaching or not.

When I’m going on a night out I use the #foreverliving Sonya range BB cream. Now I use this sparingly as the gits have discontinued it. I’ve tried to get it all over but cant find it anywhere. I’m also a distributor for forever living so am keeping up to date for any new releases of the bb cream. It’s so cooling because it has aloe vera in.

I also use the #tropic nearly nude foundation. Its natural oils moisturise without drying out the skin. I try to this more than other foundations. I’m also testing their concealer mixed in with castor oil.

Its trial and error what we use on our skin and some have allergies and are unable to use certain products so it depends what your skin can take. Alot of products burn me so I have to be so careful..

So week 3 is tomorrow. I’m feeling much better than the last time I tried to come off steroid creams. I’m managing my symptoms loads better.

Last Tuesday I woke up feeling awful. Loaded with cold and I dont know how I’m not a size 6 with the amount of gunk that I’m coughing up and blowing out of my nose… after asking in the ITSAN support group on Facebook people have confirmed this is a symptom. How lovely eh?

I also cant get warm. My nose, hands and feet are cold and I feel like my whole body is cold through to my bones.

I have no energy but still intend to kick these steroids where it hurts…

Hoping to spread some education about symptoms..

Depending on if you can stand the sun or not with how aggressive your TSW is the sun is your friend.

My lips were so bad on Thursday so I thought sod it I’m getting me some UV light. Sun beds have always helped me in the past with my excema so thought I would try it. Controversial I know and sun beds do come with their own risks but I just wanted to see.

I’ve only had two for a low time limit and it’s been beautiful weather here so have maxed out on it..

Today I have no make up on and the redness has disappeared.

I’m not promoting anything about sun beds as they come with risks and it’s your choice to use them. But it has helped me along with natural sun light.

I think the sun also helps mood.

I’m happy today.

Top pic was Thursday evening. Bottom pic today.

**UPDATE***

woke up this morning and some of the redness has returned. Unsure if it was the bloody dairy and wheat treat i had yesterday in a cheese cake! Stupid idiot me… naughty Helen.

I’ve had a cheeky sun bed for 6 minutes today so will keep this post updated.

One thing I’m learning is that TSW is so unpredictable.

Keep fighting…

So I’ve been off steroid cream for 2 weeks. The girls have had a big night out planned for good Friday for weeks now… so I decided to embrace it and go. Took me alot of different foundations and cover ups to cover up the pink ness of tsw…. tbh I feel no make up is best but that’s for another time.

During the night the skin around my bottom lip got tighter and tighter. Everytime I went to the toilet I could see it getting dryer and crustier.

I took out some moisturiser in my bag and castor oil cream but when I applied it over the top of my lips it just made the appearance look worse. I was putting it over existing BB cream and foundation. Only alternative would be to wash my lips in the toilets…. but what with because how do I know what’s in the soap and I dont want to look weird doing this in front of everyone in the toilets.

So….. I have a plan.

• Buy some baby water wipes. Strictly water I tell you
• Sit in the cubicle
• Take make up off on and around lips
• Remoisturise and apply Make up again

I feel If I can just start my make up again once it goes dry and crusty it gives me a chance at feeling a bit more confident. Its absolute shite I should have to do this but I’m looking at it as it just touching up my make up because hell yeah everyone does that…

I’m still determined to socialise and go out and not become a hermit with this, however need to feel confident and nice about myself and if this is what it takes then so be it…. loud roar…. ha…..

I’m going to experiment with the wipes tomorrow.

Shy bairns n all that.

In February 2019 I paid to see a private dermatologist as I had no idea what was going on with my lips and skin around the lips.. at this point I wasnt aware of TSW or RSS.My lips were red, cracked and weeping on both sides and the top. Eating was so difficult and smiling or laughing was a no go area. After having a massive flare at work where my lips were on fire I secured a private appt with a dermatologist the next day. This cost me nearly £200.I showed him all the tinctures I had been using and then pulled out the tube of steroid cream. To which he said that is the safest thing you’ll ever use. Go back on that until your NHS appt comes through. He recommended getting a lip battery and normal patch test too.He also made a suggestion that I try a 1% hydrocortisone cream without the canesthan ingredient in and prescribed me one. I alerted him to the fact I was highly allergic to liquid paraffin and vaseline ingredients to which he nodded and took note.In the meantime I used my old good buddy canesthan hydrocortisone steroid cream thinking i was doing the right thing. My lips cleared up within 2 weeks. Yey!Quick note: I never used the hydrocortisone the dermatologist prescribed as it contained liquid paraffin. Now you know I told you I was allergic to that stuff yeah…. so why would he prescribe me something with it in? Did he actually listen or was I just another number on his list at the end of a long day.I still wanted a solution for my excema wondering why it kept flaring without steroid cream. Two weeks before my appt with the NHS dermatologist I found out about TSW and RSS. It was amazing but so scary reading about it but finally I had an answer and could compare pictures.I had an appt on 8th April with the dermatologist, I was really hoping to get some advice and a lip battery test done. Needless to say I didn’t get any of this done. I told him that I didn’t want to go down the route of topical steroids. He agreed which made me very happy, however gave no advice of tapering off them. He then said to use a protopic cream, twice a day for two weeks and the excema will disappear. Again I told him I was allergic to bees wax and any type of paraffin… He looked in his book and confirmed it didn’t contain anything like that and was safe to use.When I got home I asked about the protopic cream in the ITSAN Facebook group. A MASSIVE NO to using the protopic was the answer from them. I’m so glad I have this support group…When I looked on the ingredients of the protopic guess what it contained?

1. Bees wax
2. Liquid paraffins hard and soft

So yet again another dermatologist prescribing me creams I’m allergic to. Just imagine if I hadnt of read the label and put it on my face…. scary!I rang the hospital to complain on Monday and I’m still waiting for a phone call back.It’s a scary world where our trained NHS dermatologists are aware you are allergic to a product but yet still prescribe it…… I have no words.. well I do but not for this blog.First pic is the hydrocortisone the dermatologist prescribed. This is the appointment I paid £200 for..

Below pic. The nasty protopic which I’m highly allergic. The dermatologist at the NHS hospital prescribed me this.

So my body is acidic and I’m changing diet to an alkaline one.

I need to exercise as it makes me feel mint, (unsure if that’s Mackem slang but it means great) I also have a holiday coming up so I’m trying to get my bikini body.

When I’m exercising I sweat alot. One because the air con in my gym is crap and then other because I’m working my butt off. My skin round my lips is so sore from TSW so when I’m going to the gym and sweating its burning and making my symptoms loads worse. Like yesterday as you can see in my beginning blog.

So this morning I’ve done body attack class at the gym and smothered my skin in natruline. Didn’t care what I looked like. It formed a great barrier around and on my lips to stop the sweat burning..

Natruline is vegan and doesn’t contain any petroleum. It works for me to stop the sweat factor. It may or may not work for you. It all depends what our skin can take during TSW.