auto immune disorder

Here we go AGAIN! :(

I’ve been reading through posts on this blog. This is my twentieth post since I started in February 2013. You couldn’t exactly call me prolific. Apologies my posts have been few and far between.

There seems to be a pattern to my subject matter (aside from patchy hair loss). One time I post about how bad my hair is falling out – then my next is about regrowth – then I talk about loss and the following focuses on regrowth. This endless cycle of growth and loss with an upbeat message hammered in at the end has been my signature.

You can view them all in order here.

So is this one about loss or growth?

In my last post – I was yakking on and on about regrowth. I am still having regrowth – especially my chin and facial hair BUT – I also have lots and lots of new patches which I’m not too pleased about. So I guess this actually fits the pattern.

My facial hair regrowth

I grew out my beard (or what there is) over Xmas 2017 when I visited Iceland. As you can see from the picture (taken in the Blue Lagoon) my ‘beard’ is multicoloured and I only have regrowth in certain parts. The white hairs on my chin have been white for 4 years.

White Beard at the Blue Lagoon!

The patches on my head continue to piss me off

I have been panicking since August 2017 that ‘my hair was going’ and I was convinced I would be bald again by the time I turned 40. Well I turned 40 in December 2017 but I still had hair – the Iceland picture was taken just after my birthday in December.

My hair has thinned out considerably and there are patches creeping around all over the place. I keep asking my partner – “Do I need to shave again??” and I’m reassured by him – “Not yet”. I asked my hairdresser recently, who told me to “relax”. This was two weeks ago – since then – the holes have increased and started to join up. Have a look at my current hairline and tell me not to worry…

my ever disappearing hairline – April 2nd 2018

Think positive or think real?

My previous train of thought was – if you think and expect something -(and then obsess over it) you invite it. This belief is stronger when your hair has regrown and isn’t falling out. It gets harder and harder when your hair does start falling out again. As mine is now.

I don’t want to be negative or get lost in a depression like I did when my hair first fell out as I know it grew back and it might again. It doesn’t help when I see hair everywhere – on my desk, pillow, the bath, my car seat – everywhere! I can hide the spots by styling but again – the wind, rain and freak weather is once again my enemy and part of me wants to just own this shit and shave my head.

I am trying to latch onto the fact that new holes appeared (then disappeared/my hair grew back) in January 2017 – as I detailed here. This current period of loss may magically grow in like it did then. BUT my brain keeps saying “No it won’t – look at yourself” and the negative feelings continue to rise.

Even my bloody eyebrow – as you can see in the first image – also has a patch missing. FFS!!!

Why now?

I’m in a really stressful moment in my life – I have gone part time at work – headed back to do a full time masters degree and am generally always really busy and stressed. This may be having an effect on my hair – or it may not – WHO EVEN KNOWS ANYMORE!

I am still taking the LDN, hair goop, vitamins and all the rest but at the moment at least – none of them seem to be working. Maybe it’s just my time to shed and this is always going to happen. It may just be that I am SHITE at managing stress and this is the result. I graduate in October and work is ramping down soon – so – as ever – I will keep you updated and let you know whether this is pure stress or the result of something else!

When am I going to blog next?

I will shortly be posting blog updates which have been written by a couple of people I have met through writing this blog. They are going to tell their story so you can see how they coped and what they went through.

And if I do ‘the big shave’ again – I will record it and upload to the site.

Speak soon

Reece

Regrowth, regrowth, regrowth

Yes you read it right from my triple title above – my hair is back – thicker and fuller that it’s been in ages. In my last post, I was heading in a downward spiral – in terms of mood and also hair loss – the dreaded patches were emerging again. Well – they’ve all gone from my head and I finally have 100% regrowth. I don’t have to avoid triple mirrors in dressing rooms anymore!

dressing room

Here’s how I maybe managed it

I’d love to say ‘it just happened’ and grew back like last time – but it never. The truth is I don’t know what’s helped the most as I’ve tried to make so many different positive steps.

I made a conscious effort not to head down the same sad, obsessive path I was on way back when this all started. Instead I took affirmative action. I may have started too many things – which is an issue as now I don’t know which (if any) are helping – so I’m carrying on with all of them – as long as my bank balance will allow.

Here’s a list of things I think may have contributed to the regrowth – in no particular order:

1. Low Dose Naltrexone (LDN)

I am still taking the LDN every night – 4.5 mg. I have never really had side effects – I talked about starting to use it here. This costs me £30 ish for every prescription.

2. A mystery potion from the Middle East

When I was in Australia in December 2016, I met someone who told me their regrowth was helped by using a lotion they bought over the internet from a Middle Eastern country. Immediately my thoughts turned to snake oil salesman and the charlatans that I was very critical of in an earlier post which focused on the treatments I’d tried.

Nevertheless I agreed to purchase said lotion – which is pretty expensive. The cost of the treatment is also the reason I’m not name-checking or linking to it here as I feel it’s not ethical to do so. I don’t really know if it honestly works and I don’t want anyone to get in debt because of me, then be upset if it doesn’t work.

If you really want to know the details please message me privately. Though I am in no way endorsing or supporting this product. It is one of the many things I have been doing.

You can private message me via the social media pages that I have created for this blog:

Even if you don’t want to message me – you might like to follow the social media pages anyway 🙂

I paid £400 for a three month supply of this lotion which I was instructed to rub into my scalp every night and wash off the next day. I honestly don’t know if it’s this that’s helping but I’m still rubbing it in every night like a drone anyway.

I have been doing this for around 3 months.

3. Yoga & relaxation

I have tried to make time for yoga as it allows me time to relax and get in tune with my body and mind at the same time. I’ve been practising Forrest Yoga with an amazing tutor in Edinburgh for a while now and it really helps me feel better at the end of a sweaty session!

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Striking a yoga pose on my 39th birthday in Singapore – December 2016

It’s also really handy as it’s near my work. If any of you ever get the chance – swing by Leith Yoga studio for a class with Janet.

4. Therapy

I think as a result of the years of stressing about being stressed, worrying about hair loss and analysing my thoughts – I’m finally pretty in-tune with myself and tend to realise when my body and mind are stressed, manic and winding out of control.

I can usually feel tenseness in my body or hear the internal chatter building to a crescendo and either loosen up or quieten down to try and combat the feelings that used to spin me out of control.

To help with this – earlier in the year I started talking therapy. I have done this once previously – 6 sessions recommended by my doctor when my hair first started falling out. This time it’s different – I’m paying for this therapist and can talk about whatever I like.

It’s rare that we get a chance to openly talk about our lives and what has contributed to make us the people we are. From family to work and relationships – everything has an effect and impact on your current view of the world and yourself. I have found it really helpful to be able to discuss all of the above with my therapist. I am going to keep going in the future – but not as regular.

5. Vitamins

I’ve been gobbling a handful of pills every morning on top of the LDN. As I mentioned a few posts ago – the concotion I’m self-medicating with includes the following capsules:

Vitamin D
Turmeric
Vitamin C
Acidophilus

Hair Tonic

I’m still taking the Chinese medicine – in the form of a capsule with Phytofol -this herb is used to nourish the liver and replenish Kidney energy (Jing) to promote healthy hair follicle function.

So what’s next?

I’m too scared to stop using anything right now. I think I’ll wait until my ‘big birthday’ is over in December and wean myself off the LDN and mystery lotion. Am going to keep up the yoga, therapy and vitamins as they are fairly low cost compared to the other two.

I’m currently really happy – loving life and quite chilled out. As I’ve always said in this blog – I think my happiness and contentment is contributing towards my regrowth more than anything I’ve listed above – however:

my mood may not have been so happy had I not had regrowth
regrowth might not have happened had I not proactively taken all the steps above

I haven’t a clue what’s working but I stand by every decision I’ve made as at least I’m doing something and I’m so glad I don’t feel the need to obsess about falling hair at the moment.

I move house in September so we shall see if I can maintain this low stress lifestyle.

I’ll keep you posted.

Reece.

Patchy hair- don’t care

Ok – so that’s a blatant lie. I do care – but I’m adopting a much more relaxed approach to falling hair – when I see it on my laptop, desk or pillow I flick it off and try not to stress about it – most of the time.

What’s changed?

Nothing, I just know from past experience that stressing will not help me in the slightest. I am also trying out my ‘mini habits’ in an effort to curb stress and freak outs. They seem to be working.

The spots

O.K. so the hives/urticaria are still coming and going and I’m unsure if they are caused by emotional stress or intolerances but they remain a constant at the moment.

Is the hair loss following the same pattern as last time?

Nope. It is now coming away everywhere! Last time it was confined to my head – face and scalp. This time my chest hair is taking a beating. Have a gander at this:

The chest

Last time I lost hair on my scalp, I didn’t really lose any on my chest – apart from one wee dot – which as you can see has now spread and had lots of little spotty babies dotted in random places across my chest.

Patchy Chest

My scalp

Alopecia patch

Patches

I keep looking at the patch on my left side whenever I get out of the shower – but the same apocalyptic feelings just aren’t there as much anymore – I give a wee shrug and feel a bit shit but so far I can pat hair over it and carry on with my day. When the day comes – or should I say – if – it comes, I have a handy pair of shears with my head’s name on them. I’ve done it before and have no issue with shaving it all off again.

I do have a few patches on my head but they seem to be minimal compared to the fast spreading ones on my chest. And like I said – I’m really not that bothered at the moment

The good news

My facial hair seems to be returning! Amidst all the shedding, my moustache is making a bit of a comeback. I am not going to rival Tom Selleck anytime soon but it’s coming back very, very slowly.

So I can now have a moustache! Ok it’s patchwork kind of moustache but it’s mine, I grew it and my face feels ‘normal’ again. It’s like I’m 14 again and trying to prove I NEED to shave. I forget it’s there but every time I see it, I have a wee smile.

So I was off work for a full week and didn’t shave. This is the result:

14 year old flashback

Those wee white hairs on my chin have been there since September 2012, when I hoped they would gradually turn black and grow like they used to. They haven’t so far – so I may rock a badger beard in the future – who knows.

Eyebrows

I’m pretty unsure what’s happening with these former caterpillars. I keep thinking that my left eyebrow is filling in a bit and then i notice wee spots of bald across both eyebrows and the panic sets in again. I can deal with no hair but would rather keep my eyebrows and eyelashes this time if possible.

Eyebrows August 2016

The Future

God knows what’s to come with the hair anywhere on my body. I’m heading to Australia, Singapore and Thailand in December so who knows if I am going to be getting my bald head burnt or crossing continents with a decent head of black hair. I’ll keep you posted.

Out damn spot. . .

Howdy folks

Can I start by saying that – the reason I started this blog was to:

“post pictures and share stories of how I’m getting on with alopecia areata as I want to be a positive voice for a not-so-positive type of hair loss”.

I was sick of hearing horror stories and reading depressed people on blogs who (in my mind at the time) were obsessed with the reason for their alopecia. I thought that their quest was an all-consuming, doomed crusade.

The above quote was my mission statement when I began the blog – but I failed to realise I actually was (and to an extent still am) one of those obsessed people – trying to work out ‘Why me’?!

What’s happened over the course of the few years I’ve been blogging is that I’ve started to dread these confessional moments – so much so that recent posts have been few and far between. I didn’t want to jinx the fact my hair was coming back by talking about it – and I didn’t want to sound like a whiny obsessive.

BUT – here I am -owning the fact that I am a whiny obsessive – at times. And that’s cool – I mean – my hair is coming out in patches across my head for f*cks sake! So I’m going to cut myself some slack, stop obsessing about obsession and get you up to speed.

I wrote the following blog post yesterday and I talk about my newest obsession – SPOTS. . .

_________________________________________________________________

Last time I explained that the patches are peeking through again. What I failed to mention was that this time they’ve been accompanied by some other weird affliction – hives/spots/urticaria whatever you wanna call it.

Spot the difference

This started in January 2016 when I noticed a few red spots on my hand. I brushed them off as just wee spots or maybe contact dermatitis. However – over the past few months – as my hair has been falling – the spots/hives have been coming back and spreading all over my body with an almost daily regularity.

This isn’t anything new – I have always had seasonal bouts of skin flare ups – as most folk do – prickly heat/heat rash and a wee bit of eczema occasionally. However – as this has coincided with my second bout of hair loss – my frantic mind overtook my sensible one and I started becoming reacquainted with the manic Google search. Worst mistake ever.

In-between protracted google searching and obsessing over the placement of dots – I kept badgering my doctor to get me referred to a dermatologist for both my alopecia and this new skin issue.

I finally got an appointment last week at the dermatologist – when I arrived I had NO spots – typical. I did have the above photos on my phone – which I showed her. She diagnosed Cholinergic Urticaria. So that’s a double whammy of alopecia areata and cholinergic urticaria.

Why is my immune system such a twat?

Cholin-er-what-now?

Sometimes referred to as heat bumps, as the rash appears as very small – surrounded by bright red flares.

What causes cholinergic urticaria?

A rise in core body temperature resulting in sweating causes the rash in cholinergic urticaria. Common triggers can include:

Exercise
Hot baths/showers
Emotional stress

Argh – stress rears it’s ugly head again as a potential trigger 😦

Obviously as my alopecia’s back & this is happening – I’m now stressing out more about both of the above – a vicious cycle of anxiety is occurring – and whirring. My already strung out brain is wondering if I have literally brought all of this upon myself – with the aforementioned ’emotional stress’.

So what am I going to do?

Firstly I’m going to deffo STOP obsessing and googling ‘hives‘, ‘red dots on skin‘, ‘urticaria‘ and all the rest every five frigging minutes – we all know where frantic googles lead…usually to a diagnosis of cancer or some other terminal, tropical, incurable disease.

I’m going to try to chill the f*ck out – on a daily basis – this applies both at home and work. Easier said than done but I have a few ideas:

How I’m going to chill:

I’m going to try to start a daily practise of mindfulness – even for just five minutes – every single day
I’m going to start going back to Bikram Yoga – I went for a few months last year and loved it. I haven’t been for a while and am thinking it might help
I’m going to keep exercising 3 or 4 times a week
I am going to try and write more on this blog
This is the hardest one – I’m going to try and cut down on the alcohol and processed food. I generally eat a healthy, vegetable and protein heavy diet but I do like the regular beer/wine/gin.

So what am I going to do if nothing works?

If, after 3 months (September 2016) none of the above help my current situation (spots and patches) – I’m tempted to go back on anti-anxiety medication – to stop the constant whirring thoughts and chatter that occupy my brain during most of my waking and worrying hours. Thoughts that are either taken up by spots or hair loss. What an exciting combo – spot and patch sound like a pair of low-rent strippers.

I’m having a daily battle with the should I – shouldn’t I. Maybe the anti anxiety medication will stop the hives and/or alopecia – or just stop me worrying about both.

Here’s hoping that in 3 months – I’ve calmed down and either gotten used to being spotty and patchy – or they have cleared up.

I will, as ever – keep you posted. Give me a shout if you want to chat or if you have any advice on the above.

Cheers