Day 97 of Topical Steroid Withdrawal

Didn't mean to let a week go past before updating my blog! I was going to wait until Day 100 of my steroid withdrawal which will be this Friday but I thought that might be a bit too long without a post.

I'm doing pretty well. There haven't been any ill effects from what happened last week and I've been going to work, fulfilling my contracted shifts and then some (an extra half an hour here and there) so I'm hoping and praying that my string of bad luck is letting up and I'm able to have some respite. My skin is still frankly a complete mess, I'm covered in scratches, my legs are scabbed and still suffering from the MRSA but they're a lot better than they were and I've paled quite a lot. My skin is really dry and has loads of shedding to do but that's all part and parcel of the healing process.


  My ankle keeps scabbing and I keep picking...   This only started over the past couple of nights. I've been scratching my thighs and scabbing is the result. Must file my nails again.   I have a lot of deep gouges like this. Hello saggy armpit - lol what the hell?!   My right arm is a bit of a mess. I look like I've been mauled by a cat! More of my right arm/hand. It is feeling easier to tolerate though so fingers crossed! I've had a good few days of relaxing with friends and forgetting about my problems which has been so beneficial to my state of mind. Good times are definitely what I've been needing! Don't forget Shane's raffle is drawn this weekend, which will be my Day 101 of withdrawal so if you're fairly local why not celebrate with me by purchasing a raffle ticket? Otherwise why not donate £1 or 2. It's for a good cause afterall and will cheer both of us up after our hellish few weeks. Help Shane reach half his pledged total - he's so close now!

Month 3: Mini Stroke

So tomorrow will mark 3 months/ 92 days of ceasing treatment of Topical Steroids. I'm not gonna lie, it's been extremely tough but in comparison to others also going through this, I don't think I've even scratched the surface (no pun intended!) with the withdrawal process. Sure, I've been through my own personal hell over these past few months but I'm not too sure as to whether I am going through the withdrawal as I should.

That won't make any sense whatsoever, but it does to me in that I seem to have undergone everything but true withdrawal. The week after I cut out the topical steroids and switched onto Ciclosporin, after one week of respite I was an absolute mess, riddled with eczema herpeticum and periorbital cellulitis; resulting in a weeks hospitalisation. After a week on the mend, my skin then seemingly split open of its own accord and then progressively spread throughout my entire body leaving me looking like that of a burns victim. The doctors were horrified and demanded I used some form of acute treatment to reduce the inflammation, otherwise I would likely die. I reluctantly transitioned myself back onto the Ciclosporin and after just a few days had what I thought was my eighth bout of eczema herpeticum. At this time I believed I was going through withdrawal with the added effects of immunosuppressive therapy but now after finding out I'd contracted MRSA I'm reluctant to believe it was true withdrawal at all; from leaving hospital weeks before.

My skin is still suffering and I think it's mainly down to the MRSA. The areas on my legs where the vesicles were previously present have now turned into huge areas of scabbing that keep shedding profusely and reforming as scabs or harder skin with periodical weeping, but not as widespread as once was. It's gonna be a long time before it has all gone; the infection may leave but the aftermath isn't pretty and will take time to heal. As for the rest of me, it's a mess but no where near as unmanageable as it was. I'm now able to go a full shift at work and the other night managed a trip to the supermarket afterwards.

And now I'll turn to another health issue I suffered only last night that I don't think is in any way related to my TSW. I've never had any problems with my health that weren't related to my skin or asthma troubles but last night was just a bit terrifying.

I suffered a Transient Ischemic Attack (TIA for short) which is essentially a mini stroke.

Yep, at just 23 years old I had a stroke. What the actual hell?!

It all started at approximately 10pm last night; we'd just got in from Shane doing a race at a place 45 minutes up the road, we'd stopped off for a Dominoes pizza as it was 9:30pm and we couldn't be bothered to cook anything at that time, and so returned home to scoff our faces (I must openly admit that a pizza is a treat for us and it isn't all that often we get takeaway because we generally can't afford to). After inhaling the pizza I needed to go have a shower. The second I got into the downstairs bathroom my vision started to go a bit funny and I couldn't focus on anything. I thought nothing too much of it though as I have had similar things happen in the past and proceeded to jump in the shower. Afterwards I got a couple of drinks to make sure it wasn't due to dehydration and covered myself in moisturiser, whilst still struggling with my vision.

I then sat down to my laptop as I knew it would be a long while before I'd be off to bed and I couldn't see the TV properly to warrant putting that on, so did my best to struggle to look at Tumblr and read some friends' statuses on Facebook. After a few moments I realised I couldn't make sense of simple sentences and just put it down to my vision giving me grief and making me unable to concentrate... but then I couldn't even type anything coherently that made comprehensible sense. I started trying to talk out loud to Shane but my words kept getting mixed up and I couldn't form a sentence. We both found it funny at first until I couldn't get my words out at all and then couldn't even get my brain to think in logic of how to even create a sentence in my head. I was reduced to stuttering and frustrated one word answers and pointing.

My first ever panic attack ensued and I was hyperventilating, crying, unable to breathe, nearly choking on my tongue and it was just horrible. It kind of felt like an asthma attack in that my chest was constricting but didn't have quite the same feel, which is hard for me to explain really if you've never experienced the different sensations of the two... After Shane could see me struggle to breathe he shoved an inhaler my way which I just chucked aside as I didn't need it, but it was too hard to communicate to tell him what was going on. I felt like a vegetable. Then suddenly I had a pins and needles sensation in my lower lip and down my arms. At this point my vision had returned but I was still hyperventilating and unable to talk.

Shane got onto the phone and dialed for an ambulance. When the paramedic turned up literally minutes later my breathing was controlled and he was able to carry out various tests. I still remained unable to speak, and even when bundled into the ambulance could barely utter a word. My thinking however was coming back so that I could think logically but all the words I wanted to say just stuck on my tongue. I then had a moment of sheer terror when the left side of my lip felt like it was falling, though when they looked at me there was nothing visibly wrong so I'm not sure what that was about.

When I finally got to hospital and in a side room my speech and comprehension returned! My bloods were then taken and I could read that the form the nurse had brought in with her stated something about a stroke. I honestly hadn't even considered that so that drove me into more panic. A stroke? Me? But I'm young!

They don't know what would have caused it as all my blood work and the testing came back fine. I don't have high blood pressure, I'm not overweight and I should really be at a low risk of these things occurring... but the point is it did occur. After 5 hours of waiting in the hospital I've been given an appointment to see a specialist to see what on earth could have caused this. The only thing I can think of is the pizza? Maybe it raised cholesterol momentarily? I dunno. I dunno how these things work.

But yeah, welcome to my life. My never ending bad luck life.

Buy Tickets, Win Prizes (Shane's Charity Raffle)

It's taken me a grand old age to draw a winner for the Silentnight giveaway but I am pleased to announce that the winner is - Victoria Androsova! Well done miss, I have now passed on your details!

In other news: Shane Nicholl is holding a raffle that will be drawing at the end of this month! Prizes include: a family ticket for Jorvik Viking Centre in York, Valerie Patisserie Treatbox, Gift box from Lush, £20 voucher for Asda, a pair of tickets for any show at the Glee Club in Nottingham, a meal for 2 at Vodka Revolution, Family passes for Burghley House & Doddington Hall, Gym passes... etc. 

For a full list of prizes go to: http://runshanerun.co.uk/raffle

Tickets will be £1 each and can be bought either in person from me or Shane or you can donate to his Justgiving page: http://www.justgiving.com/shanes1000km providing your name and ticket amount so that we can contact you and put a ticket(s) aside for you.

The draw will take place on Sat 31st August. The winners will be contacted via Facebook or email/phone. A full list of winners will be shown on Shane's webpage.

Thanks guys, and good luck :D xx

P.S. We would be grateful if you could spread the word!

P.P.S. The majority of the prizes are based in the Lincolnshire area.

Good News & Bad News

So this time last week I was in a state of real anguish and turmoil; riddled with herpeticum that just wasn't getting any better and thinking that my chances of making it to the festival were incredibly slim, given that getting dressed and leaving the house were a massive feat in themselves. Fast-forward to Thursday and I felt significantly better, or at least well enough to venture out of the house and endure the trek to Derbyshire to stay in a Travelodge for the weekend.

The next morning, after little sleep (being right next to a busy dual-carriageway is not cool), my body had visibly improved a heck of a lot and I was able to go to the festival site!!


Ignore my miserable expression, contrary to how I've been captured I was far from unhappy!

I took many, many precautions and ended up with bags and bags of luggage to prepare myself for the worst if it were to happen... which it really didn't!  I packed my "Comfywrap" leggings and polo-neck tops to sleep in to collect the ooze and stop me from ruining the hotels nice, white, crisp bed sheets and many tubegrips to wear under my leggings during the day. Clothing-wise, whilst not wanting to deviate from the sea of black too much, as it would make me stand out even more than necessary, my choice of attire for the weekend was very "skin flake friendly". I wore a lot of white and grey to stop it from showing up too much. I also wore a hat and large sunglasses to protect me from the sun. I was fully expecting to get sun burnt because I wasn't wearing sun cream as I didn't want it to irritate my already irritated skin, but thankfully I didn't. Funnily a lot of my friends didn't seem to recognise me at first as I usually dress in "metal" attire with at least some make-up on, but everyone appeared to be over-joyed that I'd been able to give two fingers to my illness and make it.

I can't thank Lisa enough for allowing me to stay in the Rock Society tent to keep cool and out of the sun. She really was doing everything possible to accommodate me and make my life that little bit easier at the festival, and for that I'm truly grateful.

And now despite having a brilliant time watching bands and reuniting with friends I only get to see at the festival and being able to withstand the long days I'm met with a bit of a spanner in the works...

My dermatologist and I assumed that I had eczema herpeticum because of how the "vesicles" appeared on my legs and the spreading nature of it. After 4 missed calls yesterday morning and a rather serious sounding voicemail message from my derm nurse, who is usually humourous regarding my condition, it's safe to say that I was very worried. She eventually got in touch with me and told me the bacterial swab they'd taken had come back positive for MRSA. 

That's right folks. I have MRSA. Another one to tick off the ever growing list of infections I've acquired.

I can only assume that I contracted this during my stay at hospital as I hadn't really left the house to be able to come into contact with anyone. Then again, a vast amount of the population live with MRSA on their skin and up their nose so who's to say? It just makes me wonder if when I was really bad the week after coming out of hospital where my skin seemingly "split open" that that is what it was, and not Topical Steroid Withdrawal.

I'm now taking Doxycycline, an antibiotic that the infection isn't resistant to so fingers crossed it goes away soon.

What baffles me most about this is that my skin started to improve at the end of last week, surely if the MRSA was raging and probably fueling itself off the penicillin based antibiotics I was taking, why did I have improvement? It also baffles me that when you look at images of MRSA they tend to be of nasty boils and doesn't tend to present itself as it has in me. Odd.

When all you want to do is cry, you just have to laugh instead.

Edit: and no one I came into contact with should be worried unless you have a seriously suppressed immune system like me, with open sores. Many people live with the virus on their skin and it does nothing, it's only when it colonises and gets in through wounds (hello eczema) that it can turn nasty.

Still Recovering (Herpeticum)

Yep, I'm still slogging away with this wretched eczema herpeticum. However there have been some changes. It is still spreading despite being tiny and I've now managed to get a patch on my back which has been otherwise clear. It is incredibly frustrating to deal with as the skin still needs to be moisturised! I've been washing my hands constantly with antibacterial soap and hand sanitiser more often than I care to in an attempt to stop the spread. It has literally been a case of wash hands, do one limb, wash hands, do another limb and so on and so forth until I am that exhausted I fall asleep! Also having to remind Shane to keep on his toes with hand washing too especially seeing as it is such a contagious virus.

I'm also seriously itchy because the skin is regenerating itself in other places but "heal peel" as I like to call it is good peel, so I can't complain about that too much. Though it is a pain because if I scratch absent mindedly I give myself a real telling off because I don't want to spread any more herpeticum!

I feel really stubborn today and want to go to my festival despite all the goings on. I will need to get a prescription for more 800mg tablets of Aciclovir as it just isn't shifting as quick as usual. I suppose with it having been all over me, my body can only do so much healing at a time and I guess legs are hardest because they're further away from the heart or some such thing? Patience dearest, have patience!

  Looking much better.   The crusty ooze I've been plagued with on both ears is now coming off as layers upon layers of shed. Mmm shed. I appear to have been very naughty though :(   More naughtiness on my chest but it looks better than before where it was covered in millions of little sores. The skin has an almost thickened look to it which makes sense because it's been crazy shedding and has a lot more to go!    I thought the red/white was amusing. Not sure if palpules are teeny miniscule herpeticum or reverting back to steroid withdrawal.   Sorry for the bad quality. It was harder than I thought it would be to get a photo of the bit starting on my back.   The herpeticum on my right ankle is giving me so much grief! It keeps weeping and spreading :( It is all over my legs but this is the worst bit. More teeny tiny vesicles on my other ankle. They are the size of  pin pricks but still raging away.

Oh well. I now need to start thinking about writing lists upon lists of stuff I need to pack, clothes I can wear, food to bring, ways to keep my health in good check etc, etc. to survive the festival. Wish me luck!

I Just Don't Know What To Do With Myself...

An update on my herpeticum - The good news is the vesicles are teeny tiny now, around 1mm in size and I think if I were to show someone new they wouldn't diagnose it as herpeticum... however it is still spreading.

This is a first time thing for me as I've never experienced it all over my body! It's on my face, neck, chest, ears, hairline, torso, arms, legs and even up my nose! I don't know how scared I should be and if anyone has any suggestions as to how I can treat it. I've been to the hospital and been given 800mg of Aciclovir to take 5x a day. I've also got some l-lysine capsules of 1000mg with a suggestion of once a day, as well as an antibiotic (but started taking this before outbreak for different reason) and antihistamines.

I've tried using tubegrips to stop me scratching the areas but then read that in the first few days of the outbreak, not to bind the area so tightly... I guess it is so they can dry up? I just don't what is best now. 

I was using Dermol as it is an antibacterial to moisturise but found it too drying so have switched to using my faithful white soft paraffin. I've been taking the Aciclovir since Friday afternoon and although it looks better, it is still definitely spreading so I'm in a bit of a predicament.

I am going to go to the hospital today for an opinion but being the weekend the dermatology department won't be open. I really don't want to have IV as I now have a fear of it from last time when my veins packed in and it was SO PAINFUL! I'm also worried of picking up more infection than going in with because of how wide spread the herpeticum is... and also how will I clean myself properly?


The buggers are really hard to get a good photograph of because they're so teeny weeny.

 

Oh it doesn't look so bad?

 

...until you see a close-up... and see them lurking.

The only part of my body that really gives it away is my legs where you can see the classic vesicles. Both legs are the same.

Poor ankle.



This is one of the parts I'm worried about. This is a close-up of my chest. Over night I must have gone to town on my chest without knowing and it is completely covered in the stuff. Gutting.

Also I'm even more gutted that today was booked off from work as holiday so that I could go to York to watch Shane do a race and catch up with some chums. Some holiday this has turned out to be. *grumble*



Eczema Herpeticum - be gone!!!

Eczema Herpeticum No.8

Yup. As the title suggests in only 15 months I've contracted eczema herpeticum 8 times.

8 times!!!

I think it's time to do some digging around into natural ways of boosting my immune system seeing as though I am essentially crippled and broken. I don't want this to open an invitation to be plagued with people telling me to use this, that and the other high cost remedy... but I do openly admit that I need some help.

Once again I've rang in sick at work and toddled off to hospital to get seen by my derm. She's given me 800mg of Aciclovir to be taken 5 times a day in the hopes we can kick this in the face (my words, not hers). The thing that terrifies me is that I've already been taking Aciclovir, albeit at a much lower dose, but nevertheless it is already in my system. Just how much longer until I become completely immune? It's frightening to think about.

She's told me to avoid sun light at all costs, which I have been trying to do. I've only been outside in the sun driving around in my car or the train journey I endured last weekend and other than that have been trying to cover myself up walking quickly to places when I've got out of my car so I'm only in direct sunlight for a matter of minutes... I might have to don a burqa at this rate!

This seriously puts my festival next week into question... can I even go?! Yet on the other hand, yes I'll end up suffering by going with this but I'll end up suffering through going anyway so why miss out on an opportunity to do something that makes me happy? I sure as hell need it after the hell I've been through. 

Life lesson: don't allow yourself to get ill kids!

Hello, worlds most flattering photograph!


...& it's all over my body. Brilliant.