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LUPUS UK
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Meds & Work update

Hello everyone,

Hope you've had a good start to the new year.

I have only been back to work for 2 weeks. 2 weeks right I cannot believe it, feels as if i never left ! I am in owls class and I do miss my old class especially the chat from the children as all 9 spoke, now I only have 2 talking children. One of them does not like me and the other girl you really have to tune in to understand her. I am still tuning in.

I have however noticed that I am not as tired as I was before. I can manage to come home now and not go straight to bed. I have even managed to get another hair wash in the week. Which is a huge thing . ( never thought I'd be excited about washing hair)

On the meds front I rang the rheumy nurse as I was only given leflunomide for 2 months and my appt with consultant isn't until 1st March. The nurse rang me and has told me to stop taking leflunomide for 2 weeks as I have raised ALT level of 123. I am quite annoyed as this happened last time with methotrexate and no one told me. I'm hoping i'll get meds sorted before I go away in Feb as i've got steroids for another few weeks. I do not want to go back to the pain I was in before. If leflunomide isn't for me i will have to wait another so many months for another med to work. I will get another blood test on the 30th Jan. I will ring rheumy nurse again to see if ALT has gone down, if it has I defo will need an appointment with consultant before 1st march.

Apart from that life is not to bad. I have started 2 new assignments for my sociology course. I have also been looking into other courses that will help me get onto a uni course in the future if I chose to. I am thinking about special needs teaching now !

I have an email into my local scout hut about volunteering with them once a week. My uncle is a scout leader where he lives and I saw him last weekend and he thinks it would be great for me. It would help with some confidence and having faith in myself.

I am also going to start doing some direct payment work for a disable child that I know. That will be one weekend a month and a few days in the holidays. January has been busy I feel like it should be the end of the month but it is not, were only just half way through it!!!!

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Sounding very good and very positive Lou xxxxxxxxxxxx

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Thanks I am trying to be more positive this year. I’m a very chilled out person in general but do have bouts of worrying. I’m trying to chill my head out more and not let certain things get the better of me xx

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Good girl!!!!

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Hello! Apart from your ALT results and the drug issues, it all sounds like you are doing amazing well in your life in general! I’m so so pleased for you! Well done Lou! And as for uni, you go for it! Aim high. Don’t let anyone hold you back. You can do it. Wendy x

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Thanks. I’ve decided I need more faith in myself. I can do things I just need to get myself started. Starting is the hard part! x

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I know what you mean. I was the first to go to uni on both sides of my family, I didn’t know anyone who had been. Quite daunting. But I did it and got my degree. Education is so important and it’s the one thing that no one can ever take away from you. x

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If I went I would be the first in my fathers family. I’m quite something on that side I’m one of the only ones who work and hasn’t had a child before the age of 18 ! 😂🙂 x

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Brilliant! Xx

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Hi LouLamb. Great to hear that you’re doing so well and just wanted to say...

I went to university as a mature student and graduated at the age of forty...the first one in our entire family to get to university.

It was one of the best things I ever did and I absolutely loved it. It opened up many new opportunities, completely changed the course of my working life (for the better), and I made loads of new friends too 😉).

Balancing the workload with outside life wasn't always easy but course tutors were fantastic about helping with extended deadlines etc., so there's always help available for those difficult patches, if they occur.

I'm thoroughly impressed and excited on your behalf (I'd go back again if I could).

Just go for it...hurrah for your grit and determination 😀😀.

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Thank you !

I think it would be great for me. I’m glad it went so well for you .

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Hi Lou , you are keeping very busy, im glad your energy levels have improved 😀 good luck with all your plans and have a wonderful 2019 . You are a lovely positive person xxx

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Thank you x

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Hi loulamb

I just love all your plans with what you want to do studying wise this year!. Helping at scouts would definitely be great for your confidence!. It's a shame at work that the Owls class isn't so nice!. Fingers tightly crossed for your bloods at end Jan!. Hope your liver improves and you don't have to change treatments!. It can take a wile to find the right combination which will be hard for you I know but I'm sure you'll get there. Keep posting, your such an inspiration. Xx

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Thank you xx

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Well done you for being so positive. Good luck with all your plans. Let's hope 2019 is going to be your year ! 👍

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Thank you x

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Well done Lou! As ever, you’re an inspiration. I very much agree with Wendy about the importance of education, which can’t be taken away from you. I was the first woman in my family who went to uni, but no-one noticed! It was an achievement somewhat overshadowed by my two-brain brother. I love him anyway! x

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Thank you .

What did you study at uni ? x

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Hi LouLamb

Happy new year to u too!! It sounds like u have the start to a very rewarding career..I worked with disabled children when I was 15ish? Most of the children couldn't speak n it was wierd at first..but I found that they responded to other stimuli..such as touch, colours, singing..I really loved it!! So much so that I decided to train to be a psychiatric nurse..that was my career for many years..I loved it!!

I'm so glad that u have more energy to persue your courses..long may it continue xx

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Thank you !

I love my job it’s the best thing I’ve ever done. This is my 3rd year. I always say if it weren’t for having lupus I wouldn’t be there.

It was only because I got lupus that I decided to do an apprenticeship!

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And thank u for reminding me of happy memories!! 🤠 Xx

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