The Lupus Forum banner
1 - 5 of 5 Posts

·
Registered
Joined
·
22 Posts
Discussion Starter · #1 ·
Hi all

I'm Lynette, 31 year old married mum of 1 daughter (almost 3 years old) from West Lothian in Scotland.

I posted a couple of times towards the end of last year while I was awaiting diagnosis. I have since been back to the rheumy in January and I think he's confirmed SLE with possible Raynauds. I say 'think' as I've not had anything in writing although my GP says that that must be what he thinks it is otherwise he wouldn't be putting me on the meds he has. Until then I had just a positive ANA 1:160 speckled and a full range of symptoms: concentration problems, migraine, blackout collapses, poor circulation in hands and feet, mild to moderate hairloss, petechia rash on upper arms, mouth ulcers and severe joint and muscular pains all over the body with severe fatigue. He was 'reluctant' to confirm the diagnosis as such as there was no evidence of inflammation but since then I've had blood work done again for monitoring and my ESR is up at 29 despite now being on 400mg of Plaquenil daily.

I see a physiotherapist fortnightly and have been given two Fischer sticks to assist my mobility. With adjustments from my workplace, who have been JUST FANTASTIC, I have managed to return, although I am in the process of applying for DLA and Blue Badge (anyone in the UK who has successfully done this, any help very gratefully appreciated as its a minefield and my local advice shop is pretty clueless!). I also take the following meds: amitryptilene, tramadol, arthrotec, bisprolol and (industrial strength) folic acid.

I'm happy to share my experience with others and help in any way I can. The last few months have been a baptism of fire and I've finally come to terms with the situation and am taking positive steps to deal with it as positively as I can by throwing myself into raising awareness of the condition through my job. Anyone in Scotland who wants to know more, feel free to PM me and likewise if I can help anyone or someone just wants someone to moan to about reaching diagnosis or anything else, please feel free to do so.

Hugs to all,

Lynette xxx
 

·
Registered
Joined
·
5,267 Posts
Hi Lynette and welcome back.

I am glad that you are getting along and that the rhemo is at least treating you.

You seem to have a positive attitude and that is great. I am glad that you are bringing awareness at your workplace too about Lupus. Every little bit helps.

You must be pretty busy with your daughter and sure she keeps you on your toes as well.

Nice to meet you.
 

·
Registered
Joined
·
7,800 Posts
Welcome nack Lynette and good to see you posting again :)

Katharine
 

·
Registered
Joined
·
1,289 Posts
Hi Lynette, it's great to see you back. :wavey: I often thought of you and wondered how you were doing.

I'm sorry that you are still unwell but it's sounds like you are getting somewhere with your treatment. It's fantastic that your workplace has been so supportive, it's encouraging to hear.

I hope you stay with us and we see alot more of you on the boards. Stay positive Lynette, you know you can PM me any time.

Hugz, :hug:

Pam xxx
 

·
Registered
Joined
·
22 Posts
Discussion Starter · #5 ·
Hi all

And thanks - its been good to be back... I think I just needed some time and space with family to figure things out and get myself up and going again. I'll definitely be on the site more often. I think I didn't want to get overly involved pre-'diagnosis' in case I came across as 'overly-knowledgeable' at appointments (I'm sure you all know where I'm coming from). Now that I have a care plan started, I'm being actively encouraged to look for ways to cope and things that help...

My work are good employers but then they do have to be, in a way. As I work at the Scottish Parliament, it would be pretty shabby if they didn't set a good example. I'm awaiting my workstation assessment and hopefully some adaptive equipment etc afterwards but on the whole, its been a positive experience to return to work and I'm no worse off on balance. Also as I have my sticks people have been asking me whats up and its a good opportunity to raise awareness. I'm also hoping with the help of one of my MSPs and those who were involved before (including Lupus UK) to restart the Scottish Parliament Cross-Party Working Group on Lupus here so anyone who might be interested in attending the meetings or being involved, feel free to PM me and I'll keep you updated on progress, and hopefully before long, the date of the first meeting.

Thanks to all for the positive messages and I hope I can give back as much help as I've received!

Hugs,

Lynette x
 
1 - 5 of 5 Posts
Top