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Monday, 31 August 2015

LDN Week 2 Update

So as promised here is my week 2 update on LDN. Nothing much to report, I am still taking a 1mg dose at 9pm. I have noticed that if I take it any later than 9pm I really struggle to sleep so if I am to stick with night time dosing this time is obviously best.

Skin on my body has remained stagnant but I have seen a lot of improvement in my face.

The rest of my body is...meh. Still itchy and sore in my 'bad' places. Hoping to see some changes when I up my dose to 1.5mg tonight :)

More updates to follow :)

S x

Friday, 28 August 2015

Bath Time & TSW

I've mentioned before that in April I moved to South Korea to teach English. As part of my contract, I got a free apartment, which is great! Unfortunately there is no bathtub. So I purchased this big pink tub so I can still have baths

 I had my first dead sea salt bath in 4 months last night, it was amazing!

So in honour of my lovely new princess tub I thought I would do a post on bathing, what works for me, and what I've seen work for others.

Throughout this withdrawal process, bathing has been my saving grace. It's the one place (apart from the sea) that I can feel totally relaxed and itch-free. Some people going through withdrawal spend most of their life in the bath in the early days, even sleeping in the tub sometimes because it's the only place they can get some relief.

There are many different kinds of soothing baths that you can take and I thought I would outline some of the main ones that I've come across and provide some help. Just click on any of the brands and you should be redirected to the websites. Starting with my personal favourite...

Dead Sea Salt

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I could not go a week without these! I love swimming in the sea, it is one of the only things that can really turn my skin around in a flare and this is the next best thing. There are lots of blogs that can inform you about bathing in dead sea but personally, i use about 1 cup of salt per bath, depending how bad my skin is i may use less/more (worse = more, better = less). I run the bath quite hot and put the salt in while it runs. Then, I leave the bath to cool down and hop in! Most people recommend a tepid bath but I have no problems with a hotter bath so that's what I do.

 Some people like to add bicarbonate of soda to the tub to prevent stinging and this really does work. But personally, I feel the stinging eliminates the itch so I actually prefer it. If you have little ones I would recommend adding the soda so it doesn't sting, it's hard for them to understand that it is for the best sometimes! 
I usually soak for about 20 minutes, which is the recommended time for the minerals to really soak into your skin and work their magic. I've actually taken to watching an episode of the simpsons on my laptop (perched safely on a chair across the other side of the room of course!) because they are 23 minutes long and pass the time well! 

Dead Sea Salt links...
Epsom Salt

Brands I've used: Westlab, Boots
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I usually only take an Epsom bath if I'm out of dead sea salts as they are generally more readily available. I follow a similar structure to the one above, only I will add less epsom than I usually would DSS (Dead Sea Salt) because it tends to sting me a little more. EVERYONE is different but for me Epsom doesnt sting as much but creates a kind of tight feeling on my skin which isn't my favourite. BUT it does do the trick and softens my skin up nicely.

Epsom links...

Pink Himalayan Salt

Brands I've used: Westlab, Frontier

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A lot of people love pink himalayan and I do too! I find it very similar to Dead Sea Salt, the only difference being that I find DSS leaves my skin ever so slightly softer. Again, I follow the same process as the DSS baths, using the same amount of salt. I don't find this stings as much as DSS but, like I mentioned, I do actually like the sting in terms of the way it eliminates itch for me.

Pink Himalayan links...

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I took my first bentonite clay bath yesterday and boy did it feel good :) Things can get a little messy and there are more things to keep in mind than with a sea salt bath but it is worth it.
For a clay bath, I use about 1 cup of clay for a normal sized bath. Many people use more, but I don't like to use too much because it's expensive and I find that 1 cup usually works fine for me. Experiment! There aren't really any set rules for how much you can use.
Instead of just putting the powder into the tub, I mix the amount of clay I'm going to use first with water in a plastic bowl and then mix this wet clay into the water, I find it dissolves much better.

Then I get in the tub and relax for about 30 minutes with this one, to really give it chance to detox me! I spread the water over my body but I'm always careful to keep the clay wet when it's on me, I don't like it when it dries on sensitive skin. I use George's Aloe Vera Spray to keep the clay on my body wet.
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Once I've soaked, I rinse off in the shower and then empty the tub, making sure to catch any clumps of clay so they don't block the drain.
And that's it!

Bentonite clay links...

& that's it for all the baths I have tried. I know a lot of people also have a lot of sucess with BLEACH BATHS and ESSENTIAL OIL BATHS (click the links for more info). Phew! I love my tub :) If you've got any more ideas for some great TSW baths please let me know, I'm always happy to spend more time in the bath ;)

Photos coming soon and an LDN 2 week update on Monday

Happy healing 
S x

Monday, 24 August 2015

LDN 1 week update

Started LDN 1 week ago today, *yay*. I actually upped my dose after the first night after doing some reading around about LDN. For most, 1mg is actually still considered a very low dose and as I had had no trouble with the 0.5mg my first night I decided to throw caution to the wind and took 1mg from then on.

My plan is to stay here at 1mg nightly for another week, then go up to 1.5mg nightly. 1 week is really no time at all in terms of seeing effects so there isnt too much to report.

Here's what I have noticed...

  • Vivid dreams - a very common one among LDN users, and I don't want to use the word 'side effect' because I don't really see this as a bad thing. Theyre not nightmares, just very vivid dreams. Dreams in technicolour that start the minute I drift off to sleep and stop the second I open my eyes. I actually quite like this! I used to lucid dream a lot but haven't been able to do so in the past year or so this is a very welcome change.
  • Sleep changes - I really don't want to attribute this to LDN because my sleep has always been very messed up. It takes me a while to drift off to sleep and when I do I usually wake up every 2 or 3 hours. This is the same now on LDN. So I don't think it is the LDN causing my sleep problems, they exist anyway. However what I have noticed is that even though I aren't getting much sleep, I feel much more rested than I usually would. The amount of sleep I'm getting has not changed but I feel as though the quality of my sleep has.
  • Skin - again, I don't want to say what is happening with my skin has anything at all to do with LDN because I don't think I've given it enough time and I don't think my dose is high enough yet to make any real difference. 

What I will say is that for the past couple of weeks I have been in a really horrific flare. Almost as bad as the beginning, which is very disheartening considering I am still taking 200mg of ciclosporin daily. I am coming out the other side of the flare now, thankfully. I will post some pictures later this week, I'm hoping this break lasts long enough that I can get some nice ones to compare to the horrible ones.  It has been really difficult. Crying in the shower, scratch fests in the toilets at work, the lot. Horrible :(

I think, as usual, what started to turn things around was swimming in the sea on Saturday. I use the word 'swimming' loosely as what it basically involved was me getting into the water, neck-deep and holding my boyfriend's hand whilst i cried and (inwardly) screamed in pain (i was polite enough not to scream out loud for fear the coastguard would come and take me away). Anyway the pain was worth it because the very same day I  started to feel much better.

Then, yesterday I took a shower and applied Cerave cream as a bodywash in the shower. I can't really use moisturiser when my skin is dry but it can tolerate it pretty well when it is wet.

A couple of things I ordered online arrived today which are going to be super helpful for me too...
I ordered a huge pink plastic tub that I can bathe in, not having a bath was killing me! Especially when it gets too cold to swim in the sea. I also ordered more probiotics, benotite clay, coconut oil and dead sea salt! So I'm all stocked up.

Anyway, sorry for the essay! Seemed I had a lot I wanted to get down once I started writing. I'll update with some photos this week and then again next week for a Week 2 LDN update

Happy healing!
S x

Tuesday, 18 August 2015

LDN - Low Dose Naltrexone

I'm going to be blogging about starting LDN very soon. I took my first dose yesterday, a tiny dose of 0.5mg because I want to work my way up slowly,hopefully with the aim of coming off ciclo.

I have a lot of time to kill this week before students come back to school so I've been reading a lot of medical reports and watching a lot of video blogs about LDN and found this one very interesting. It explains LDN clearly. It's a little long but I thought I would post it for anyone who is curious about this immuno-regulator.

& here is a shorter video for those who aren't sat at a desk clock-watching all day...

For anyone who is curious or interested in starting this treatment there are a number of very useful facebook groups where you can find lots of information...

Click the links to be redirected

 - LDN and TSW 
 - LDN Research Trust 
 - LDN Users Chit Chat Group

There is a lot of useful information on these sites and so many helpful people there who have reassured any worries I might have had about starting LDN.

I will be sure to update my blog with my progress :)

Monday, 17 August 2015

19 months/17 months update and a rant

(19 months off topicals, 17 off all steroids)

So, probably because I'm struggling much more at the minute than I have been, I've decided to post another update.

I went on holiday to Japan, it was amazing! I did have some skin troubles though :(
But I thought I would post some pictures of my skin, along with some pics of my holiday because why not!

So before I left I was just coming out of a flare and while I was there my skin was GREAT. really smooth. However the heat made me very sticky and I think that's the reason I'm back in another flare now :( I'm trying to remain positive.

Here are some pictures!

I somehow manage to not look like im trying to tear my skin from my limbs. Fancy that!

Anyway here are some skin pics, flaring now.

^this is the general texture of my skin. its horrible. bumpy, oozy, sticky. ugh :(

I'm feeling very emotional, not wanting to leave the house, feeling desperate. I just struggle to see the end sometimes. I know it will come (or at least I hope). It's just so hard to carry  on with no guidance. I think that is the hardest part for me. I just want to be able to go to the Dr, explain my situation and trust that they will do the right thing for me. But I can't do that. The Dr doesn't have my best interests at heart and that is hurtful and makes me feel hopeless.

Dr Rap has been posting on the facebook group a lot and has created a blog which is infinitely reassuring. I just wish there was a Dr Rap in every country, infinite Dr Raps!!

Nowadays I think the only use in going to most Doctors is if you have researched your condition, you know what drugs you need and you just have to go to the Dr to get the script filled. I'm sure most people can relate to that. How stupid is that?

I recently saw someone post this sign they had seen at their doctors..

Maybe I'm feeling particularly emotional lately but I can't put into words how angry that makes me. I cant tell if its a 'joke' or not but even so...we as patients are now going to be punished for taking our health into our own hands? There is a reason so many of us 'self diagnose' and that is because our doctors are not doing it for us! Despite the fact that that is their job. Despite the fact that they should listen to our needs and not just mindlessly write us a script. We are not all the same. We are all different, we have different needs and we should be treated as patients, not customers.

I know I shouldnt get so angry but when I constantly walk around in a skin that feels 2 sizes too small for me, shedding skin everywhere, having anxiety attacks when I get even the slightest bit sweaty, it is very difficult not to blame the people who did this to me and to so many others.

Hmph :(

Anyway that's all for now. Hopefully I will see some relief soon :( x

Wednesday, 5 August 2015

Time for an update... (photos)

(19 months off topicals, 17 off all steroids)
Been a while since I posted so I think now is as good a time as any.

So what has happened since I last posted...quite a lot I guess! I have moved to South Korea to teach English for one. I was still on 300mg of ciclosporine daily when i left and i got an appointment with a derm here ASAP. The derm really does not like to prescribe me ciclosporine here. And it is EXPENSIVE. I am paying about $120 a month for my prescription. So I attempted to reduce my dose in the hope of being able to come off the meds at some point soon.

I have been on 300mg a day for a long time, over a year, so I had no idea how it would go. I reduced from 300mg daily to 200mg daily about 7 or 8 weeks ago now I think, and my skin has gone slightly crazy, mostly on my face.

Severe itching, some burning, LOTS of shedding, edema, oozing, insomnia, urgh.
I am seeing flares in places I have never had trouble with before, including on my face. Scabbing, oozing and flaking around my mouth, edema and shedding around my eyes. I have dated the pictures so you can see how it tends to flare and flake, heal temporarily, then starts the cycle again.

I am hoping this is just a flare happening because I am reducing, and that once my body adjusts it will calm down a little, but I'm feeling pessimistic if I'm honest! I am however looking into starting LDN soon so hopefully that will help. This is an expensive medication to take overseas!

Anyway, less chat, more pictures.

I intend to update once I have started LDN/began to reduce further so hopefully more updates soon.

Photos, oldest first

16th July 2015
Skin around my mouth had been dry for a long time, things started to get crazy on this day.

face very swollen, dried ooze around mouth

^^ trying to stop the ooze at work!! argh

^^^ post-ooze. very swollen around the eyes. smiling though!

17th July 2015, the next day.

^scabbing around the mouth. neck is very red with elephant skin

18th July...things get a bit crazy

^ burst into tears when I woke up and saw this. Took a shower and gently exfoliated. Then, applied zinc and lemongrass balm.

^post exfoliating and balm application.

^Later that day.

^comparison between AM and PM. My shower/exfoliation and application of balm really helped.

20th July 2015

^things still very calm!

21st July 2015

^feeling smug with my rapid healing!!

Things have stayed pretty stagnant since. Residual dryness around my mouth and a sore neck.
Sorry for bombardment of photos but it is useful for me to see them all together and hopefully others' will find it useful too!

Hope everyone is getting by! <3