Dignity Is On The Other Side Of The Curtain

So on Thursday I got my Azathioprine. I couldn’t take them until yesterday (Friday).

The week hasn’t been too bad, still itchy but the peeling has stopped for now. My face is now my own, as well as my hands. The infections seem calmer now, not clear but at least I’m not so itchy. Thanks you Elocon.

It’s been an uneventful week, I was still stupidly tired. I’m no longer anti social, and my migraines have subsided slightly. This week may have been uneventful but I have adjusted my diet. After some reasearch I decided to cut down carbs, this shouldn’t be done without supervision from a doctor. So it has been just over a  week, I’ve cut the obvious carbs like potatoes and bread. I feel much better, my skin more importantly seems happier and the migraines calmed down after the second day. My skin peeling also calmed down. This may not be as a result of the new diet but I’m going to experiment a bit more.

So as I said I got my Azathioprine Thursday. I had a blood test before hand to see if I may have a reaction. This came back clear. It started as any other appointment, with me half-naked behind a curtain. My consultant handed me a gown for “dignity”. As I pointed out to her, dignity is a lost concept in dermatology. I’m positive more people have seen me nearly naked in derm, than ever will in my life time.

I was once again weighed and we talked about the Azathioprine. I said in another post I wasn’t too concerned about this drug. I should have been, I did read the leaflet in the waiting room but I guess I didn’t realise, how strong this one is. The side effects are nastier, and be prepared to discuss the contraception you’re using as it’s important, to only have a planned pregnancy. It’s easy to just think that I had taken the plunge so why not. I didn’t think that this could be so different, that the side effects would be so different. It works in the same way though, here is a link http://www.bad.org.uk/site/799/default.aspx

I had to have a full 24 hours without Ciclosporin, in order to be safe. The tablets are much better. Small and yellow, I take 100mg once a day, this allows for any changes in the dose to be made. This one a day is much better for me because twice a day was a pain! The tablets have no odour or taste. I’ve had two doses, one yesterday and one today. I feel fine, Dr Lewis did warn that if I felt instantly sick to not take them but I feel fine.

It’s too early to see any difference, it could take a few months. For the first 6 weeks I’m going to have weekly blood tests. After that I think it just goes back to every 6 weeks.

Hopefully this will work, at least for longer than the Ciclosporin.

Only Ever Dream Big

So as we know, I itch and also fall over (loads) and say stupid things.

Turns out I’m Autistic, not really surprising I do some pretty random things. This just affects the way I learn, unless I can can colour it in or its colourful I ain’t learning it.

The problem with my sky-high dreaming, is that some derm doctors are concerned that I won’t be able to fulfill my dream of being a nurse. To this point I have been on tv, been to the house of commons, changed the way sex education is taught, I have taught, I have worked for the NSPCC and currently working for The Princes Trust, I’ve handed out condoms and just done  random jobs all at the age of 23.

I get that some dreams are way out there, and the docs are right I could fail, but I would rather fail half way through knowing that I tried. I wanna make mistakes to know they are mistakes. I think we should all dream sky-high.

Sure it can seem hard to follow dreams, sometimes you don’t know where to start. It’s scary to leave a job and just go for something but that’s what makes life so interesting and fun. Life’s amazing even when you spend most of it itchy.

Love, dreams there things you have to grab. Hold on tight to and always fight for. We don’t just get given things, we have to find them, discover them and protect them.

If you dream it, do it. You never know what could happen.

Here’s To New Beginnings :)

So I was meant to post last week, but all sorts of things happened I will explain all.

The week began much like any other, I was in a foul mood and itchy. Possibly due to the huge exam, I knew I had to take and the up coming appointment with my consultant. I also still, had the infection in and around my eye, this was actually driving me mad. I was given fusidic acid eye drops (this was a lie, they were not drops as my doctor said, it was a horrible cream thing). The infection meant I looked like I had a black eye.

Anyway, eventually Wednesday the 19th came, the appointment, I saw a SHO (basically a doctor who works in my consultants clinic) first. He was lovely, slightly nervous when it came to the “let’s have a look” but he got through it. Then my consultant came, She asked a few questions to see if I had actually read the information, any doctor who knows me is aware I pay very little attention. She was nice, I asked a thousand questions, like can I eat apples? (some forum said I couldn’t. This was a lie!) I was weighed, and the doctor worked out the correct amount. I was reminded that I will have my blood pressure and kidney function tested every 2 weeks.

So it’s been just over a week now, I take 110 mg twice a day, I’m not happy about the fact I have to take it at 10 am and 10 pm, it would have been nice to be consulted about the times but hey.  I’m really surprised, I feel great. The itching has almost gone, to the point that I have to remember to put cream on. Its been quick, I was told it could take up to 4 months to see results, but my infections have cleared up nicely and with out steroids. I feel calmer and I’ve slept!!  I also now have the fun of being given an inhaler for the cough that wont go away.

However, I did fail my big exam :(. I was disappointed but, I can see now that I could do with the break it’s just 6 months. I know I failed due to lack of sleep, which lead me to go blank and make silly mistakes. I’ve always wanted to be a nurse and I will be a nurse, first I’ll get my health under control and then go back.

The Ciclosporin, is amazing. I feel so much better but there’s a down side. Firstly, we have the burning sensation in my feet. It actually feels like my feet are on fire periodically through the day, it isn’t painful just annoying. Then we have the one that is extremely annoying, heartburn and indigestion. Its vile, like my throat is full of acid and random burning in my chest. It happens randomly throughout the day, I was given Gaviscon, I really don’t like that either!! not the taste, the texture yuk!!. Worse than the Gaviscon, is the smell of the 100 mg tablet. It’s a cross between the smell of marijuana and stale sweat. It sadly tastes the same, but you do get used to it I guess.

I now feel like I’m carrying Boots around in my bag, my bag contains two boxes of Neoral Ciclosporin, Gaviscon tablets (I gave up on the liquid), my inhaler, Diprobase, Dermol and eye drops.

I know that other people may have to make the same decision as me, hearing the contents of my bag makes it all seem like a massive chore. I couldn’t tell anyone to make the same decision, I did to be honest I still didn’t know what word would come out my mouth when my consultant asked me for my answer. Looking around on the web before the appointment, I saw many people discussing Ciclosporin, but no-one gave a background or said how or if it had worked. I hope this blog will give anyone with that decision some help, or any other kind of immunosuppressant.

I have however realised this week, that I do miss my mishaps. I feel like a whole new person, which I love of course but I do miss my quirks. I feel normal, well as normal as you can be carrying all the above around.  On the bright side my friends say I seem less crazy : )

A Cautionary Tale

I never thought that a chorus of a song, would actually be a night of my life.

This said night, happened around 8 months or so ago, possibly longer. It began as any other weekend, until my mum offered to babysit, which does not happen very often this called for a lot of alcohol!!

I will not lie, I remember getting ready, a few drinks then nothing. Until I came home, I felt hot and itchy. I thought it would be sensible to take a shower. This normally is sensible, but I learnt the hard way drunken showering is not my friend.

All was going well until, I was about to get out. I had managed to apply my Dermol 200, I had even got my towel. Then as I was getting out, I slipped.

I loved the song Torn by Natalie Imbruglia, I just never imagined that I would actually be, cold, ashamed, not so naked  but lying on the floor. As I lay I began to laugh, until I thought I had broken my leg, I really didn’t want to crawl and ring an ambulance, (I had clearly not washed of the Dermol off, so crawling on laminate floor would not be sensible) to be taken to the hospital I use for placements. I attempted to figure out if my leg was broken myself.

What I can only assume, was several hours later I woke. Still cold, not so ashamed more embarrassed, using my bath mat for extra warmth so not so naked, still lying on the floor. I have now learnt that extreme caution should be used when showering, showering drunk = not a good idea and, that what I thought was broken, wasn’t even bruised.

Do I Know Me?

So i am just a few days away from, the appointment in which I have to give my decision.

In writing this blog I’ve seen my world, but others haven’t. Those who are closest me. I realised that this is mainly because, I haven’t really ever come to terms with my life. I’m so busy that I don’t think, I scratch and apply cream without thinking, almost like breathing.

Apart from this year, since i was 14 I’ve had 3, pretty long stable, not very good but can be classed as relationships. My skin/body wasn’t an issue, the first I was too young to care, the next well I have no clue, he never asked so I never told. The third was a friends brother who knew everything.

My 4 closest friends I’ve known for a long time, they’ve seen it, people at uni well I leave them to draw their own conclusion, but those who I’m sort of close with but not so much, the thought doesn’t sit well.

I guess I thought this was just eczema, it would go away. These past few months my, allergies are causing breathing problems and my skin, well that has a mind of its own.

I still wear a cardigan/jacket/coat no matter what the weather and, the thought of wearing skirts or shorts without tights, well that just freaks me out. My family and friends tell me I’m being silly and not to worry about other people, but that’s all any of us do. We may not be aware of this but we do, somewhere in our brain we think hhhmmm will I look good in that.

My daughter, is the person who I hope will never feel this way, I make sure she’s out there in shorts or skirts, because I know deep down this condition has not only destroyed my skin, its destroyed me. In fact I don’t know if I’ve ever been able to find me.

I guess the fact that I don’t mind people who don’t me reading my thoughts, feelings and let’s say mishaps, but people who know me? Says a lot and I can’t explain it, it just makes me want to hide. I live my life day-to-day and just deal with it, but talking about how my life is affected is somehow different. It always amazes me how people comment how sore or, painful it must be but never think about what else could be painful.

I know in the long run when this is calm and there are no infections, I can begin scar therapy or laser therapy I have no clue what they actually call it. The ciclosporin will hopefully speed all this up, but I wonder how much will change? My life has been spent hiding away, not talking about it, just existing and not being exposed. Prehaps this explains the train wreck that is my love life, somewhere my brain says, “Sophie, at some point he’s going to ask”.

Sometimes, well most of the time I think the ciclosproin is the only answer, my GP told me that I really need to look at the benefits and think about the future, I’ve exhausted every avenue, infections are now longer, worse and harder to get rid of. The question still remains though, will my view of myself, or my view of how others view me ever change?

It’s just cream!!

There have been a few times I’ve wanted to scream the phrase “it’s just cream!!” at people.

Exams, is where this begins. Seriously what do they think is in my cream? Have I somehow managed to work how to cheat using my cream? It’s actually rather funny, watching some invigilator walk past, look at me, look at the cream then pick it up and put it on the floor. This normally ends with me sat in a hall, for 10 minutes with my hand in the air, the other one tapping the desk so I don’t scratch.

I went to film for a day time TV show, a couple of years ago. To talk about my much-loved subject of teenage sex/contraception. Whilst sat in a dressing, I was reminded that I could not take anything on stage. Sat under hot studio lights would not be my skins best friend. This was certain. No one seemed to know what to do, the producers had no idea if I could take my cream. I’m not sure if they thought I was somehow going to use this tube as a weapon? Maybe launch it at someone? Either way I opted to use Vaseline, keep the pot on me and hoped it worked. To be fair to Vaseline it did help, untill I got my cream.

If I had the energy I could use a pot as a weapon, or devise some method of cheating with my cream, but to be honest I’d just rather use it to stop me itching.

If its broke, we fix it

Today really isn’t a good day. The past few weeks haven’t been great either.

Since seeing my consultant and being told medication is unsafe I’ve been becoming more like my old incredibly itchy self. Its now only my feet which aren’t affected,  its becoming increasingly more frustrating too.

I’ve been getting the usual skin infections but as my skin is quite damaged at the moment its allowing more infections to creep in.

Im still taking my chloraphenamine and using cream and bandages but it feels that as soon, as i get control i lose it just as quick. Its not as easy to maintain as it was when i finished my meds. It makes me feel like i want medication again but i know its too risky.

At the moment my skin is in crisis but managed. Its sore and itchy but it isn’t getting better or worse so i guess that’s good. Im not sleeping too well again which is frustrating as im tired,  but i get by and im sure it will settle.

I also had a comment about red skin syndrome which i am lucky not to have, but it is something that needs to be spoke about. Im lucky that my skin is calmer after the use of steroids, i also don’t use steroids until my skin becomes infected (yellow or oozy/weepy). I am also very careful with my steroids and although they are potent they are not the highest you can get. I always have my steroids but don’t rely on the as such. I do need them bit i can live without them. It os best to only use steroids if they are needed and not to use them for a long period of time. Think of it as pain relief the longer you take them the less likey they are to work and the more addictive they become.

Even with steroids or medication, life can decide it just doesn’t want to play ball. Normally if you’re ill you go to the doctors and they give you something to ‘fix’ it. I guess although i know im stuck like this forever sometimes it really slaps you in the face.

The circle of life

So i went to derm again, and once again the azathioprine isn’t being tolerated well by my body. My liver function tests were not what Dr Lewis was expecting. My blood pressure however was reducing.

So i am now off all meds apart for piriton, which i take 4 to 5 times a day. I feel better in a way, i have about 90% control on my skin by using steroids, steri paste and my general creams.

Its nice to have some control and this allows me to continue uni without thousands of appointments. All in all it is great to know i can control it but i also know that if i relapse, there’s not any medication  i can safely take.

I know now that in the future i can safely have more children and i won’t be carrying around all sorts of pills, but knowing i have no safety net is worrying because i know im not going to get better i will just get control, but that’s tomorrows problem and today is going well.

Im sleeping better, thinking better and feeling a lot better. Im still itchy at times and have had a minor skin infection but my control is a lot better now. Its not full remission but it will do.

Second chances

So last Thursday i was given azathioprine again . I was glad, ciclosporine wasn’t working and there was no way i was going to drop my dose.

Saturday i had to go the eye hospital due to another infection! I woke up with a swollen eye and pain everywhere. I was given antibiotics and sent in my way, my eye was back to normal by Sunday night.

Monday began another week of pain, i wasn’t itchy but in pain! I took the azathioprine at around 6pm and went ti bed around half 9. By 10 i was awake holding my chest with horrific pain, i couldn’t do anything to ease the pain . I tried gaviscon and codeine which didn’t help and ended up awake most of the night.

Which leads me to today, the pain is during the day and worse when eating. I’ve tried everything and so i decided i would come back to clinic and speak to Dr Lewis because i can’t deal with that level of pain  again .

So she has suggested i take a break for a week and go back to see her, it could be the antibiotics and azathioprine. So that’s what i shall do, i would like to stay on aza though as my skin has become calm and i don’t want ciclo back.

Either i need to take something, this last term at uni I’ve missed quite a few lectures. I’ve been asked to go in Monday and discuss my stability for the course. I have no idea what that’s meant to mean, but it looks like im going to be defending myself again.

Trip down memory lane

So almost 12 weeks ago i went back onto ciclosporin. It hasn’t worked as well as it did the first but my face calmed down.

It started out with the same side effects, but the tiredness was ridiculous. Trying to juggle parenthood, home life and uni with ciclo is exhausting!! My concentration was fading too, its been difficult adjusting to taking ciclo again.

So i had the normal 6 week check up with Dr Lewis. It was frustrating, my skin hadn’t calmed down, i couldn’t think straight because i was so sleepy and i couldn’t sleep because i was so itchy. It ended with betnovate RD and steripaste. Once again i was back in wet bandages, just like when i was a kid. It has to the worse thing I’ve had to do in years, the thought of my skin being as bad as it was when i was young upset me. It felt like i was just going backwards.

So its 5 weeks after that appointment. Im on 3 antibiotics for none skin related infections, but its most probably ciclosporin related. The ciclo is also the reason that i can’t shake these infections. My skin is better now my infections are under control, and im sleeping better now. I still feel crap though, its just another jump backwards. This month has been difficult, not just because of my skin but all those little things that come with it.

Im pretty sure i want off the ciclo, i don’t feel like its helping much. I’ve had to rely on steroids and try to ‘cheer up’, I’ve spent the last few months being really grumpy and i don’t mean to but sometimes, people thing their helping when their not. I also wasn’t prepared for uni, i didn’t realise how much the side effect of fatigue would impact on my studies. The countless infections haven’t helped either. Hopefully next week i can try something else and gain some control
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Scratchbob Itchpants

So it’s been a few weeks since my last appointment. I have been using the Lymecycline, once a day every day since getting them.

I’m currently beyond itchy, the tablets have removed the massive rash but hasn’t done much else. My face is still red and itchy, my skin looks better but feels no better. I don’t really know if this medication has actually done anything, or if it’s just a coincidence.

As for the rest of my body, well its square one all over again. In fact its worse than it was before I started any immunosuppressant. There’s new areas now, like my face and especially back that are driving me insane. My hands are itchy, my legs are itchy. Once again im back to not being able to sleep, im irritable and fed up.

I can see now that the Ciclosporin was working to an extent, as I wasn’t this bad whilst on it, the Azathioprin didn’t get much of a chance to work so I can’t comment on that.

This now leaves me in a situation that doesn’t seem to have an answer just yet. I still have a few weeks before my next derm appointment, depending on how this week ends it may be moved forward. The weather isn’t helping and my allergies are back with vengeance.

Some things are worth a try, I’m not so sure about my future on any type of immunosuppressant but I can’t deny how amazing the remission was and how much I miss it.

Angry Face

So last week, I was put onto Azathioprine. I took my first dose on the Friday and all was well. Sunday morning, I woke up with swollen fingers. Monday I woke up with a red, angry, sore and bumpy rash on my face. In short, an angry face.

I went to the doctors on the Monday morning, and the GP was concerned. He told me to stop Azathioprine, gave me some Clarithromycin and took a lot of blood tests. I have had bone profile, gamma GT, liver function tests, renal screen, full blood count, thyroid and enzyme tests, along with some I can’t rememeber. I havent got all the results back yet as I haven’t asked for them. I’m sure they will get in touch if they need to.

So I rang my consultant, who got me an appointment in her clinic today. My face is still sore, bumpy and angry but better. We had a chat today, and again I got to undress. She was really nice, she has said I need to stay off the Azathioprine, and for now carry on the Clarithromycin. Once the course is finished I begin Lymecycline, which is pretty much the same, just another antibiotic (it would of been Erythromycin but it makes me poorly) that I can take this for 6 weeks. When the 6 weeks is up I see doctor Lewis again.

On Monday I was disheartened because the Ciclosporin stopped working ages a go I just wanted to stop feeling so itchy. I understand that my body isn’t happy, and really needs a rest from the harsh drugs but it’s just crap to be honest. This really leaves me in limbo because I’m not sure what happens now, or how my body will cope.

I think the worse thing this week, though was my University. I went to Occupational Health to give them an update. The person I normally see had left so I saw someone new. She made me feel like I had to defend myself. Questioning my ability and, asking if I understand how hard it will be on my skin. Yes I do, but I still have to defend my right to be there. My right to be a nurse, it’s this that is difficult. I wouldn’t be there if I didn’t think I could do it. I see Dr Lewis loads and do pretty much as I’m told. At the moment it’s left at, her going to speak to some private consultant that works for the university. I guess I have to wait.

So it’s now a waiting game and hoping that my body can become happy again. If I can go back to immuno-suppressants will be another waiting game.

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