Showing posts with label hospital appointment. Show all posts
Showing posts with label hospital appointment. Show all posts

14 Jan 2015

Positive Vibes and Mung Beans

Wednesday 14th January 2015

Shit! It's 2015! How the hell did that happen? Well I have some very good news (makes a nice change huh?) I had a routine appointment at the Lupus Unit on Friday (it used to be at St Thomas' Hospital in London and to be honest it was a bit run down but it's moved to Guys now and it's all shiny and new) anyway, I had my appointment and the doctor told me that all my blood tests (all 16) from my last appointment have come back perfect.  Yep, perfect! No dodgy things happening whatsoever. I have a normal cell count, my organs are functioning as they should, I have no inflammation and basically, I am ALL GOOD BABY! I was quite shocked to be honest but I have been really well for ages now so I guess that's why.  Lupus is fully in remission - I kicked that shit to the curb! Faye 1-0 Lupus. Mu har har har!! 


On a less positive note, (sorry) the doctor told me to take Aspirin everyday from now on as I have a high risk of having a stroke. Nice. It's very odd to be told at 29 years old you are likely to have a stroke unless you take precautions.  But hey ho! Nowt you can do about it, just listen to the doctors and don't worry about unless it actually happens.


Ooooh I have more good news - I started a new part-time job in Waitrose a couple of weeks ago and I am absolutely LOVING it!  To be honest I've wanted to work there for a ages.  When I was full-time and struggling to cope I wanted to apply for a part time job but then I deteriorated even more and couldn't work at all.  Once I'd taken time out, my health improved drastically and I felt ready to work again so worked one day a week with my bestie but I found the travelling and 9-5.30 day took it out of me and when I was planning the wedding it was all a bit much so I decided to stop.  Once the wedding was over I felt a lot better and more able to concentrate on other things so I started working in a friend's shop which I really enjoy and I'm hoping to continue doing so but I still liked the idea of working in Waitrose - it's a ten minute walk down the road, I like shopping in there and I love food/cooking and talking to people so it's a no brainer really!

I went online before Christmas and they had a Supermarket Assistant role going for Tuesdays and Fridays working from 11am-3pm. Perfect! So after doing the online application (which involves phsychometric tests) I got through the first round and was invited to a group interview with 7 others after which we had a 1:1 interview and were told we'd be contacted within a couple of weeks.  I was also made aware there were actually 2 jobs going, the 11am-3pm one and a night shift from 12am-8am. They asked me if I'd be open to that and I said yes (thinking that if I got it, I'd do it for a while and then hopefully change my hours once I'd got my foot in the door) they also told us the contract is only 3 months which is disappointing but a jobs a job at the end of the day!  Anyway I had a call 2 days later and they said they'd given those jobs to 2 of the others but they had an opening for a job behind the counters (meat, fish, deli, cheese etc) she asked if I'd like that and obviously I said yes, the only drawback is that its working Saturday morning and Sundays but again, I wasn't going to turn it down.  

So yeah, I started a couple of weeks ago and even though I didn't get the job I applied for, I think I've ended up with a better job as I am enjoying it so much.  There is so much to learn! For the first few days I was on the Meat and Fish counter and I learnt how to gut and skin fish, I also learnt a lot about different cuts of meat and how to cook different things and I've loved chatting with customers.  I'm looking forward to getting to the point where I can recommend products and recipes.  Then the other day I moved on to the deli and cheese counter which I also enjoyed - who knew there were sooooo many cheeses and salamis?

I've been doing overtime too which is nice - they have a sheet up with any extra hours going and you can choose which days you fancy doing, which is perfect for me, because if I'm feeling tired after my weekend shifts I don't have to do any other days but if I'm feeling OK then I can stick my name down.  I feel like it's the perfect job for me and the situation I am in.  I'd love to become one of their cheese or fish specialists or an advisor but it's only a temporary contract so I don't know if that will happen. One of the managers told me they are all really happy with me and he said he knows a good'n when he sees one and I'm a good'n. So that was good to hear. And I think I'm doing well with the customers - well, one sang to me the other day! Haha! And a few others have said nice things so I think I'm doing quite well so far.  Hopefully they decide to keep me on!

Not a bad start to 2015! 


After 3 months of marriage I can't tell you the amount of times people have asked when we are going to start a family. Grrr! Personally I think it's a very rude question to ask - especially someone with health issues like me.  In January 2013 we were told not to even consider trying for a baby because I was too unwell.  I was told my risk of miscarriage was extremely high especially later on in the pregnancy (grim isn't it?) however, all is well now and I've been told I am all good to go ahead (although I am still at a higher risk of miscarriage but not as high as before). At my appointment on Friday, the doc asked me how old I am and when I said 29 he gave me a leaflet regarding pregnancy and Lupus and practically told me to go home and get on it! I explained I've just got a new job and we only live in a small flat (on the 5th floor) so it aint happening just yet and to be really honest, I don't think Sami or I are ready - we are having too much fun!  However, it's no secret that I am extremely broody and have recently taken up the habit of welling up at cute babies but I am not ready yet.  I think the plan is for me to have a permanent job then we can sell the flat and buy a small house/bigger flat and then we might think about it. But for now, it's not on the agenda. If one more person asks I don't know how polite I will be.  Oh, and, 'How's married life?' Its the same! Nothing has changed! Nothing! Apart from my surname! Oh and the fact that Sami can't run away so easily now but that's it! Lord give me strength.


In other news, Mum and I have started Yoga and Pilates.  Mum has a heart condition and you know all about me with Lupus etc so we thought it would be a good idea.  We had our first session last week and both really enjoyed it.  I think I said in a recent Facebook status that I was hoping to get all 'Zen and bendy' but the next day I was feckin banjaxed! I was stiff as a board and couldn't laugh without it hurting my 'core' haha, not quite the image I had in my head.  In my head I was all floaty and softly spoken in a pretty kaftan with weird beads around my wrist. In reality I was walking around like John Wayne and making old people noises whenever I sat down or got up.  Hmmm maybe the bendy zen will come in time.


There's a Facebook thing going around at the moment where you change your profile pic to the first ever one you had.  Wow, I did not like doing it, it made me realise I've aged quite a bit in the last 8 years! I was like shit! I need to go get me some expensive anti-wrinkle cream that has words all over the packaging like 'amino peptide complex'.  I was feeling really shit but then I went to work and a colleague was shocked I was married and said I didn't look old enough. This made me extremely happy. Then I went to buy some wine (cos you know, I was sad about my crows feet) and the guy ID'd me.  This made me feel better and the wine became a celebratory bottle as opposed to a commiseration bottle. Perhaps I'm not so decrepit after all.


This has been quite a long post hasn't it? I hope I haven't waffled too much! I'm not at work today so thought I'd so something rather than just sit there watching Frasier.  I'm not planning on doing much else today though - I worked Saturday, Sunday, Monday and yesterday so its time to chill today.  It's quite nice now that I'm working I can relax guilt free. I always felt so bad before when I did nothing all day. I know I was ill but you still feel bad when your husband comes home knackered from working hard all day and you're there in yesterday's pyjamas with unwashed hair and all you've achieved is finishing the Sex and the City boxset (for the fiftieth time) but now I can have a day off without it being coloured in guilt.


Right now to do some hula hooping - I'm back on it after looking at old profile pics! Not only do I feel old but I also feel like a big fatty boofta. In my head I'm a 15 stone 60 year old. Hahaha. No point whinging about it - gonna go get some over-priced cream with complicated ingredients, do some hooping and get some mung beans for my post-yoga lunch tomorrow. Or Quinoa? Oh, something nutritious and weird.  And then I'm blatantly gonna be starving and binge on fried chicken and carbs! Loads of carbs! I'm really not cut out for this eat-clean shite. Eat chocolate and be happy. People on strict diets are so boring and highly annoying.  One of the those e-card things hit the nail on the head with 'No one likes a skinny, sober bitch anyway.'


On that note, I'm off.  Happy New Year to you all - I sincerely hope 2015 is a good one. xxxx


9 Apr 2013

You can't have the rainbow without a little rain


Obviously, when you have been a healthy person your whole life and one day you are diagnosed with a life-long and shitty illness a lot of things change and you enter a whole new world.  In my case I've entered a world where you appreciate everyday that you're able to get out of bed.  Just now I was really enjoying doing the washing up (I know!) because the hot water felt good on my stiff hands! AND it felt great that I was able to do the washing up.  Yipppeee!



Since entering this weird new world I have found a lot of things to be very strange indeed. For instance I remember being amazed that I have an illness that has a charity.  A charity. People actually jump out of planes and shit to help people with Lupus. Wow.

Another thing that is really weird, is even after two years I still find it difficult to swallow a tablet. 
Its so stupid.  I put it in my mouth and have a little argument with myself, "Go on! swallow it you twonk!" Then I'll go. "I can't! I'm scared!"  I almost have to pluck up the guts to do it.  This is EVERY night with all 12 tablets.  It takes ages.  Sami just looks at me like, "What are you doing you weirdo?"
Do you know he says I'm the weirdest person he knows.  He said I'm weirder than Sheldon off The Big Bang Theory.  That's just rude.  I'm not weird....Am I?

I remember being so sad that I'd never have a natural tan again.  For those that aren't aware, Lupus symptoms can be exacerbated by the sun and people with lupus can become very unwell after UV exposure.  Something to do with the sun making the cells move faster and triggering a lupus flare.  Skin rashes can flare up too.  So its factor 50 and the shade for me nowadays.

I decided to get a spray tan last summer to try and make myself feel better.  I will NEVER ever get one again.  It was so bad that when Sami saw me he actually screamed.

The salon is a good 20 min walk from home and I RAN all the way.  People were staring at me and one little girl said, "Mummy why did that lady paint herself?" I was BLACK.  So not a good look for a white English/Irish girl with fair hair.  I wish I still had the pic to show you but sadly I don't.

Those are just some of the odd things, I'm sure there are many more.

I do actually think I'm a nicer person now. Not that I was a horrible person before but I can certainly empathise more with people who have shit to deal with.  But then on the other hand, I'm a lot less tolerant   of (annoying) people.  Such as people who have no real problems at all that just moan and moan for no reason, I want to punch them.  I just wish I could say 'GO AWAY!'

BUT people who have never really experienced tough times do not understand how lucky they are.  So they don't realise how douchey they sound.

I remember when I used to have my hair done, if it wasn't perfect I would go MENTAL. Like 2 year old tantrum stylie.  Then when I was on the Azathioprine and my hair went really thin and started coming out I said to myself I will never moan about my hair again.  And I haven't.  But it took that for me to realise how stupid I was being.  People that moan about their hair as well. Ohmygod. I understand that they don't realise but still, sort it out will you.

So what I'm trying to say is that you can't have the rainbow without a little rain.  You need the shitty bits in life to make you realise how fortunate you actually are and to appreciate the good things.  Stop and smell the roses people.  They smell goooood!




I've used up all my sick days so I'm calling in dead


After my marathon sleep sesh yesterday I woke up for a wee while, had dinner, wrote some shit and got back into bed.  Come 'normal' bed time I was still knackered despite having slept most of the day. However, sleep was not something I got much of last night. 

Our neighbours decided to have the biggest argument ever. It sounded like two guys and a girl. One of the guys was crying and screamed so loud, I've never heard anything like it. We've lived here 3 yrs and never had any issues whatsoever. Then these douches moved in about 6 months ago. We usually hear them doing it as opposed to arguing and I'm sure there are too many of them in that flat as well. Not sure. Will keep our eyes open.  Haha! Well Sami will and I'll try to keep them open longer than half an hour! Lols.

So I woke up this morning, even more exhausted, in pain all over and a thumping head ache, like those ones where it hurts to open your eyes. I called in sick which makes me feel really guilty but I would be no use today.  I hate it, I felt like saying to my boss, 'Hi, sorry I've used up all my sick days this year so I'm calling in dead.'    I saw that quote on one of those ee cards once and I thought I'm defo using that one!

I couldn't have gone in today I'm half asleep writing this and typing is hard work, I keep forgetting how to spell stuff and my hands are really stiff. Sami took one look at me this morning and just said no, you've got to stay here today. So here I am, writing this from my bed again. 


I need to find the energy to change the duvet covers - I sweated like a beast last night. Sorry for the gory details but these night sweats are horrendous. Once the arguing stopped and I finally got to sleep, I woke up about 4 times, each time soaked. Even my hair was wet. So gross. I asked the doc about these night sweats and he just said its one of those lupus things. Lovely. Sami goes to hug me in the night and soon changes his mind! Lol poor bloke. We shouldn't laugh but sometimes you have to. 


As I've been in bed for the past few days I've obviously had a lot of time to look out the window and I thought this view last night was particularly lovely: 




Definitely got to appreciate the small things in life. 


Hopefully a nice rest today will allow me to go to work tomorrow.  I don't want to spend another day in bed. Its boring. Oh crapety crap, I am going to be sooo bored when I leave work in a few weeks....however it has to be done so I'll just have to get on with it and try and find a way to enjoy doing nothing for a bit.  

Thank god I enjoy writing, it gives me something to do! I didn't realise how much I love it until I started doing this blog. I love talking so I guess it makes sense to love writing too!


Its been an amazing form of therapy. I can just get all my feelings off my chest and go about my day without thinking about it all. I highly recommend it. 


Right, I'm going to attempt to get in the bath now then I'm going to change the bed sheets, take some tramadol and sleeeeeep. Mmmmm I love the feeling of fresh bed sheets. 


I hope you all have a great day. Xx

8 Apr 2013

Gin & Tonic

Monday 8 April 2013 

I had my quarterly check up at St Thomas' Hospital in London today.  It went OK.  I wanted to discuss my current medications as it seems like they aren't working.  The doc said he doesn't want to change them just yet as we need to figure out why I've had such a bad few months.  He thinks all the infections I've had could have triggered the lupus to flare so badly, although he is not entirely sure.  He has therefore decided to keep me on current meds plus steroids.  Fecking steroids.  (See post titled 'steroids' for information on why I hate them)  I have to take a high dose for a couple of weeks to see if it makes me feel better  then we'll discuss the results in July. 

These appointments can be very frustrating because you want to go there and hear them say, "Here you go, take this and you'll be fine,  your lupus will go away forever!"  Obviously that doesn't happen so you have to just accept what they tell you and get on with it.

I only had 9 blood tests today (I usually have between 15-20, he's very thorough this guy!)  He was checking my renal and liver profile and various other things such as certain anti-bodies that cause problems in Lupus, it's amazing what they can tell from your blood!  He said he will write to me if he finds anything 'exciting'.  He really is a nutty professor.  I love him, with his elbow patches and bow ties.  

We had quite a long chat today and he told me that when someone with Lupus gets an infection or even just a common cold its worse than in a normal person.  Apparently we feel it a lot more (plus an infection/cold triggers the lupus to flare so on top of feeling ill you get all the joint pains/fatigue etc)  I am so glad he confirmed this and I'm not just the worlds biggest wimp.  I had tonsillitis last week and I think it's the most ill I've ever felt!  Talking of being  a wimp, the psycho nurse who did my blood test today really hurt me!  I actually said 'ouch!' out loud.  I think she was using my arm as some kind of  therapy.  You know like when you go to a boxing class and you imagine the punch bag to be someone you hate? Yeah, well she was definitely imagining stabbing someone she hates.  I'm not sure if I should be doing her for assault or not.

The doc also told me today to drink gin and tonic.  For medicinal reasons.  Apparently the quinine in tonic is good for lupus.  I said, "What's the gin for then?"  He said, "Why not?"  That's fine by me! 

I'm currently writing this in bed - I am EXHAUSTED today.  I got home about 2pm and have been asleep most of the day (it's 7pm now).  I usually go for a nice lunch and trip round the shops after a hospital appointment (I go and visit the shoes in Selfridges) but today I had to come home =0( and get in my pj's.  Sami even had to collect me from the train station because I couldn't face the 15 minute walk home.  What a joke.  I wonder if I can get a mobility scooter based on being too tired to walk anywhere?